Good morning! I will have to say that yesterday was a fairly good day up until somewhere around 5 p.m.
I made my call to my doctor's office about moving up the test where I swallow this camera in a pill, but was told that they couldn't do that yet. I was told it would depend on what the pathology report came back with.
I'm okay with that though. I will go Friday afternoon to get the results from that, then move forward from there.
I'm feeling really bad for my husband right now, though. When he came home from work, I was on the phone with my mom. Things are not going well health wise for her, or my step-dad. My mother has been through a lot in her life. She is a fighter, and a survivor. She is actually a cancer survivor, which is only one of many things she has dealt with in her life, so for her to vocalize to me that she is scared of what's going on with her and my step-dad gives me a reason to be a bit anxious. After I ended my phone call with her I summarized everything with my husband, and you could tell he was clearly shook up by what I was telling him. I already know that he has a deep seated fear of what my pathology report is going to show. A year and one-half ago his mother passed from a gastric carcinoma (i.e. stomach cancer). He has not voiced this to me, but I see it in his face, and he called me from work a couple of times yesterday to "see how I was doing." This information on my parents just stressed him out even more. Shortly after I told him the information on the parents, his sister called to give us the results of her MRI. She was in an auto accident a short time back and has been having severe neck pain. Her results showed a bulging disc, a herniated disc, some stenosis (narrowing) around the spinal column and a cyst near her brain. I think this was the final straw to put him over the edge.
My husband is an extremely strong man. He feels it is his duty to be that way, and that he has to be the strong one in his family. In the past seven years he has lost both of his brothers and his mother, and he had lost his father one year before I met him. That leaves him as the oldest in his family, and the only male. Normally I am a very strong and independant woman, but I admit I have been allowing myself to be weak and lean on him the past few weeks. I've become more emotional than I have ever been, being prone to tears, which is so not me. My mom says that this is just my body responding to being in constant pain. But, I am feeling guilty for burdening him with my health issues.
I wonder.....am I the only one with Crohn's who feels guilty about the burden they put on their family? I mean it sometimes means that I don't want to cook them a meal, because the smell of the food makes me want to throw up. It means at the last minute saying that I can't do something or go somewhere because I'm having an affair with the toilet. I am feeling guilty because I have been so sick over the past few months. I know he understands when I have to say that I just can't go somewhere or do something, but I hate that he feels he has to cancel too. I know that it is hard for those who know nothing about Crohn's and who do not live with someone with Crohn's to understand that just because I was fine that morning, does not mean that I am fine that afternoon or evening. I know because there is no visible sign on the outside that they have a hard time understanding that there is complete havoc going on in my insides.
Guilt....it's an ugly thing, and I know I should not be feeling it. I turned down watching two of my grandchildren today because of this dang disease. I would love to spend time with them, but I am no good at watching a three year old and a newborn if I am running to the bathroom.
So, here's my point. If you have a family member with Crohn's, or a friend with it, try to be understanding. Try to realize that they may not voice their feelings, but that they probably feel guilty for having to bale out on you, again. Don't make remarks that make them feel worse than they already do, and please don't say "I understand", because you don't! If you want to say, "not a problem, we'll do something when you are feeling a little better", or even change "your" agenda and just come over and hang out with them so they don't feel like an outcast then do that. Just try your hardest not to make them feel guilty.
Until next time.....
Remember to LIVE, LAUGH and LOVE!
C
Tuesday, July 29, 2014
Monday, July 28, 2014
Unintentional Absence
Wow! The past two weeks have been pretty tough. The first week I simply could not concentrate on writing anything, as my stepson and grandson were at home the whole entire week. Why is it that children are absolute monsters when their parents are around, but behave great when they are not? Anyway, it's a poor excuse, but I really, truly could not concentrate on writing anything, nor could I even think clearly with a constant stream of whining, Mickey Mouse and having to yell at my dogs, since they aren't used to a house full of people either. The dogs are the opposite of a child. When it's just them and me, they are great. Add one more human in to the mix and they think they don't have to listen.
Last week I had to prep for my third scope in 6 months. I will be honest, this is really starting to freak me out. Normally I am a pretty calm person, and I handle all the medical stuff in a calm, nonchalant manner. Not this time. I don't know if it's because I have had so many scopes in such a short amount of time, or if it is because I just don't seem to be feeling any better in spite of medicines and surgery. They did both an upper and lower scope this past Wednesday. The good news is that the lower scope looked good. On the upper scope I know they took some biopsies from my stomach. I think the fact that it is my stomach is what has me freaked out. I have only been able to eat a few bites of food at a time lately, and that is if I can even get food down at all. As humans, our minds automatically go to worse case scenarios, which is what my mind has been doing ever since this last Wednesday. I have a history of stomach ulcers, so I'm sure that this is probably what it is again.
I have one more test to do, and I'm going to call today to see if I can do it this week, as I don't want to wait two weeks until I get my biopsy reports. This time I get to swallow a pill cam. It is literally a pill with a camera inside it! I'm terrible with swallowing pills, and this thing is the size of a horse pill! It should be interesting to see if I can get this thing down me.
I know that I need to have faith that all will work out as planned. I am working on staying positive and not let this disease get the better of me mentally. I write this for people to understand what it is like to live with Crohn's Disease. To help make people aware that this is a very real illness. That it interferes with your life in multiple ways. I am not equating it to cancer, but in many ways it can be just as devastating. I'm thrilled that they are finally going to start working on what causes Crohn's instead of just working on medicines to help control the symptoms. So if you see me out and about, and think that my Crohn's Disease is not that serious just because I look good on the outside, please consider what it is doing to my insides.
Until next time.....
Remember to LIVE, LAUGH and LOVE!
C
Last week I had to prep for my third scope in 6 months. I will be honest, this is really starting to freak me out. Normally I am a pretty calm person, and I handle all the medical stuff in a calm, nonchalant manner. Not this time. I don't know if it's because I have had so many scopes in such a short amount of time, or if it is because I just don't seem to be feeling any better in spite of medicines and surgery. They did both an upper and lower scope this past Wednesday. The good news is that the lower scope looked good. On the upper scope I know they took some biopsies from my stomach. I think the fact that it is my stomach is what has me freaked out. I have only been able to eat a few bites of food at a time lately, and that is if I can even get food down at all. As humans, our minds automatically go to worse case scenarios, which is what my mind has been doing ever since this last Wednesday. I have a history of stomach ulcers, so I'm sure that this is probably what it is again.
I have one more test to do, and I'm going to call today to see if I can do it this week, as I don't want to wait two weeks until I get my biopsy reports. This time I get to swallow a pill cam. It is literally a pill with a camera inside it! I'm terrible with swallowing pills, and this thing is the size of a horse pill! It should be interesting to see if I can get this thing down me.
I know that I need to have faith that all will work out as planned. I am working on staying positive and not let this disease get the better of me mentally. I write this for people to understand what it is like to live with Crohn's Disease. To help make people aware that this is a very real illness. That it interferes with your life in multiple ways. I am not equating it to cancer, but in many ways it can be just as devastating. I'm thrilled that they are finally going to start working on what causes Crohn's instead of just working on medicines to help control the symptoms. So if you see me out and about, and think that my Crohn's Disease is not that serious just because I look good on the outside, please consider what it is doing to my insides.
Until next time.....
Remember to LIVE, LAUGH and LOVE!
C
Saturday, July 12, 2014
Why I Hate Restaurants
Everyone loves to go out to eat once in awhile. Mr. Right and I used to go out once a week. Our favorite places were Olive Garden, Carraba's Italian Grill and Long Horn Steakhouse. Due to my Crohn's, it has become a habit for me to deny myself and my husband the pleasure of going out to eat. It's not that I don't like going out, I do! What I hate is how I cannot have most of the items on the menu. They are either too high in fat content, too hard to digest (red meat) or the portions are just way too large for someone with Crohn's.
I mentioned in an earlier post that most people consider me a picky eater. I really do like food, but yes, I am picky. I have come to a point in my life that one moments guilty pleasure is not going to make me miserable for one or two days. I crave the salad at Olive Garden. It is always fresh, and their house dressing is absolutely wonderful. I grew up on a farm eating home-grown beef, so when I can get a really good steak it makes my mouth water. Here again I run into trouble. I have been specifically told by my doctor to avoid red meat, especially steak, because it is too hard for my body to break down and digest. We can go to Carraba's and there are things I can order there without too much harm to my digestive system, but the portions are always way too large, and even though the servers don't say anything, I always get these looks when they come by and it looks like I have not even touched my food.
My husband and I went to lunch at Olive Garden on Valentine's Day this year. He had to work, but called me and asked me to meet him for lunch. This is not something he does very often, because he tends to skip lunch on most days. This was probably not the most romantic thing in some people's eyes, but I know that for him to take time from his work is a big deal. Anyway, we went to Olive Garden and I ordered two items from the appetizer menu. When I told our server that this was going to be my entree` she asked me twice if I was sure. I explained to her that I have a digestive disease and so this would be all I would be ordering. At the end of our meal I asked for a to-go box for my leftovers. She looked at my plate and actually made a comment about how little I ate of the food. Now I'm sure that she did not mean to be rude or offensive to me, but I do get a little tired of people judging me about the amount of food I eat.
Recently I went to lunch with my sister-in-law and a good friend. They chose the place we were going to eat at, which is fine, except I kind of wish they would have asked me if this was going to be a problem or not. The place we went has good food, but there literally is almost nothing on their menu that I could eat. I did end up ordering off of the appetizer menu again, but at least the server this time did not question my choice.
Here's the thing though; I don't feel like I should have to explain myself to a server about my food choices, or have them get angry at me if I ask if I can order off of the kids menu. I'm not trying to be cheap, and if you are a good server, I tend to leave a pretty generous tip. I do know that there are some places that are now serving smaller portions for those who are "watching" their weight, but the choices are limited and a lot of the time they are not what I want to eat. I would love it if restaurant managers were trained to realize that there are people out there with restrictive diets that need to have the smaller portions. Just like people with Celiac Disease cannot have gluten, there are a lot of people with other digestive disorders that cannot eat these large portions.
My other huge dislike is buffets. My step-dad loves buffets, as does my husband. When we were in Vegas recently, my mom and step-dad had these coupons for buy one-get one for the buffet in the casino/resort we were staying at. I'm thankful that I was pretty much eating for free, because otherwise I feel like I am wasting money. My typical breakfast was one scoop of scrambled eggs, two slices of bacon and a slice of toast. What, maybe a $6.00 breakfast at the restaurant right next door to the buffet? Yet, the cost for going through the buffet line was $14.99. Now I will grant you that my husband made up for the amount of food that I did not eat, because that is what men tend to do with a buffet. Here again though, half of my problem was the choices of food they had were foods that I cannot tolerate. I like them, it's just that my body does not tolerate them. Needless to say, the only time my husband gets to enjoy a buffet is when we go to Vegas, which is once a year. Poor guy, the things he puts up with being married to someone with Crohn's.
Part of why I started writing this blog is to help people understand Crohn's Disease better, and what it is like for the person who has it. I want to raise awareness, and maybe help get some changes made. Maybe, if more people were aware of this disease that no one likes to talk about, we can get more research done.
Restaurants are just a small obstacle in my path. I would love to be able to go out to dinner or lunch with my husband or friends, and not feel like an outcast because I look like a picky eater, or ask them if it would be okay to order off of the kids menu. If you are the family or friend of someone with a digestive disease, maybe the next time you go out with them, ask them for their suggestions on where to eat. I bet they know a few good places that will satisfy everyone's appetites. Until tomorrow....
Many Blessings and Remember....LIVE, LAUGH and LOVE!
C
I mentioned in an earlier post that most people consider me a picky eater. I really do like food, but yes, I am picky. I have come to a point in my life that one moments guilty pleasure is not going to make me miserable for one or two days. I crave the salad at Olive Garden. It is always fresh, and their house dressing is absolutely wonderful. I grew up on a farm eating home-grown beef, so when I can get a really good steak it makes my mouth water. Here again I run into trouble. I have been specifically told by my doctor to avoid red meat, especially steak, because it is too hard for my body to break down and digest. We can go to Carraba's and there are things I can order there without too much harm to my digestive system, but the portions are always way too large, and even though the servers don't say anything, I always get these looks when they come by and it looks like I have not even touched my food.
My husband and I went to lunch at Olive Garden on Valentine's Day this year. He had to work, but called me and asked me to meet him for lunch. This is not something he does very often, because he tends to skip lunch on most days. This was probably not the most romantic thing in some people's eyes, but I know that for him to take time from his work is a big deal. Anyway, we went to Olive Garden and I ordered two items from the appetizer menu. When I told our server that this was going to be my entree` she asked me twice if I was sure. I explained to her that I have a digestive disease and so this would be all I would be ordering. At the end of our meal I asked for a to-go box for my leftovers. She looked at my plate and actually made a comment about how little I ate of the food. Now I'm sure that she did not mean to be rude or offensive to me, but I do get a little tired of people judging me about the amount of food I eat.
Recently I went to lunch with my sister-in-law and a good friend. They chose the place we were going to eat at, which is fine, except I kind of wish they would have asked me if this was going to be a problem or not. The place we went has good food, but there literally is almost nothing on their menu that I could eat. I did end up ordering off of the appetizer menu again, but at least the server this time did not question my choice.
Here's the thing though; I don't feel like I should have to explain myself to a server about my food choices, or have them get angry at me if I ask if I can order off of the kids menu. I'm not trying to be cheap, and if you are a good server, I tend to leave a pretty generous tip. I do know that there are some places that are now serving smaller portions for those who are "watching" their weight, but the choices are limited and a lot of the time they are not what I want to eat. I would love it if restaurant managers were trained to realize that there are people out there with restrictive diets that need to have the smaller portions. Just like people with Celiac Disease cannot have gluten, there are a lot of people with other digestive disorders that cannot eat these large portions.
My other huge dislike is buffets. My step-dad loves buffets, as does my husband. When we were in Vegas recently, my mom and step-dad had these coupons for buy one-get one for the buffet in the casino/resort we were staying at. I'm thankful that I was pretty much eating for free, because otherwise I feel like I am wasting money. My typical breakfast was one scoop of scrambled eggs, two slices of bacon and a slice of toast. What, maybe a $6.00 breakfast at the restaurant right next door to the buffet? Yet, the cost for going through the buffet line was $14.99. Now I will grant you that my husband made up for the amount of food that I did not eat, because that is what men tend to do with a buffet. Here again though, half of my problem was the choices of food they had were foods that I cannot tolerate. I like them, it's just that my body does not tolerate them. Needless to say, the only time my husband gets to enjoy a buffet is when we go to Vegas, which is once a year. Poor guy, the things he puts up with being married to someone with Crohn's.
Part of why I started writing this blog is to help people understand Crohn's Disease better, and what it is like for the person who has it. I want to raise awareness, and maybe help get some changes made. Maybe, if more people were aware of this disease that no one likes to talk about, we can get more research done.
Restaurants are just a small obstacle in my path. I would love to be able to go out to dinner or lunch with my husband or friends, and not feel like an outcast because I look like a picky eater, or ask them if it would be okay to order off of the kids menu. If you are the family or friend of someone with a digestive disease, maybe the next time you go out with them, ask them for their suggestions on where to eat. I bet they know a few good places that will satisfy everyone's appetites. Until tomorrow....
Many Blessings and Remember....LIVE, LAUGH and LOVE!
C
Friday, July 11, 2014
Chaos Times 4 - Part 3
It's been a crazy week around here, which is why today is Friday and I am still talking about Tuesday. On the last post I was talking about my worries about my grandson having Pediatric Crohn's Disease, and being thankful that it was a very fixable problem that he was having. I also briefly mentioned that I had an appointment Tuesday with my GI doctor, so that it where today's post is heading.
If you have not read any of my earlier post, I have had diagnosed Crohn's Disease for 34 years. I spent the majority of my teen years in and out of the hospital with the symptoms of Crohn's. Back then they didn't know much about Crohn's and there were only two medications to treat symptoms. Azulfidine and Prednisone. As it ends up, I am allergic to sulfa-based drugs so the Azulfidine did not work and there was a point where I was taking 80 mg daily of Prednisone. Prednisone has very ugly side effects and long term usage can lead to other conditions down the road such as Osteoporosis, which I now have. When I was 24 I had my first Small Bowel Resection surgery. Surgery does not "cure" Crohn's Disease, but it can make a person asymptomatic for a long period of time. Off and on through the years I did pretty well. I had symptoms and there were some periods where the doctors put me on Prednisone to take down the inflammation in my small intestine, but nothing major. I did have one doctor at a very reputable research clinic try to tell me that all of the doctors before him were wrong about 7 years ago, and that I never had nor have Crohn's Disease. This included his predecessor who was well known in the medical community as well as a published doctor in all of the medical journals on the disease. It just so happened at that point in my life, other than bouts of diarrhea, I was doing well. In fact, I was doing wonderful. I hadn't felt that good in years! I did tell my husband that I wasn't going back to him. He was young, arrogant and apparently didn't even bother to look at my medical records. For 7 years I did not go to a GI doctor. If I was having really bad episodes of symptoms, I just went through my primary care doctor, and took a lot of Imodium AD.
That is the past in a nutshell, which brings us to the year of 2014. I started having symptoms about one year ago, though I will admit I wasn't necessarily looking at them as Crohn's symptoms. That was mainly due to the fact that my body was acting differently than it had in the past. Sure I was having bouts of diarrhea, but I was also having bouts of constipation. In fact, I was thankful that I was going less. I was working at a new job and I had been worried about what I was going to do if I had to make emergency runs to the bathroom. I would open the store 4 days a week, and I would be by myself in there from 6:45 - 9:30 by myself. How was I supposed to run a store if I was in the bathroom constantly? So, even though I should have been paying more attention to my body and what it was telling me, I didn't. The only thing I kept telling my doctor is that I had this excruciating pain in my right back and side. For months they treated it as a pulled muscle. When I told them that muscle relaxers and the pain medicine they had me on were not doing a thing, they assumed it must be my spine. They sent me for an MRI of my thoracic spine as the next step. The MRI showed some slight deterioration, but since I have osteoporosis that would be expected. The pain kept getting worse and I couldn't sit, or sleep without extreme pain.
In January I came home one day from work, so exhausted that I just collapsed into a chair. I had been on my feet for 10 hours straight with only two quick breaks, just for the simple fact that the store had been extremely busy and no one had a chance to really go to lunch. By the time Mr. Right came home 30 minutes later, I was doubled up in pain, and every time I tried to move or sit up straight, I could not do it. We have a good choice of hospitals where I live, one of them being the Mayo Clinic, but I chose to go to one of the ones that my primary has practicing rights at. Thankfully they got me into an ER room right away, and ordered a CT of my abdomen. The CT showed inflammation of my small bowel at the terminating end. Of course this is where my previous resection had been. They admitted me and assigned a GI doctor to me. After a week of IV antibiotics and being poked twice a day for blood work they sent me home with a prescription for Pentasa and Prednisone and a follow-up appointment with the GI doctor. It ends up that for one I could not afford the Pentasa. It was over $1000 for a 30 day supply, plus I couldn't take them since they are a sulfa-based medication. I let the doctor's office know, and they informed me to just take the Prednisone and we would hope that the inflammation went down. At my doctor appointment he decided that we would take the Humira route instead to see if that would help. It takes a long time to get a prescription for Humira filled. You have to have a TB skin test and chest x-rays, then the company that manufactures it must approve that you are a good canidate for the medication. Once that happens, they send everything in to your insurance company who must approve it, and then it finally gets sent to a specialty pharmacy and they overnight it to you via FedEx, because it needs to stay refrigerated.
Before they could get all these steps done for this prescription I ended up back in the ER, almost exactly one month from the first visit there. Once again a CT scan showed increased inflammation, but this time it was also in my colon. So for another week I received IV antibiotics and a soft-foods diet before they discharged me. About a week later I received my approval for the Humira and it was over-night shipped to me. I'll admit that I was more than a little nervous about having to give myself injections, but I knew that I would get over it and do what I needed to do. Before I could start on them I needed to set up an appointment with a nurse who would educate me on the proper procedure, etc. This took another week to get in there. I was finally to the point where I was going to do this. The first initial dose is 4 different injections given one right after the other, which is pretty nerve racking. I had psyched myself up to doing a injection, but 4 of them! I no sooner was started on my injection routine before I once again became so doubled up with pain, and non-stop diarrhea that I once again made a trip to the ER. I had been going to the bathroom for 36 hours straight, and I'm really not sure how. You would think that after the first 8 or 9 trips to the bathroom that your body would have nothing left in it.
This takes us almost up to date on the present. On April 1, I had another small bowel resection and two weeks after being admitted to the hospital I was allowed to go home. This time it was with a prescription for Entocort. To know more about Entocort please go to the link provided.
So, one would think that between surgery and all these different medications that I would be feeling like a million bucks. Wrong! I wake up every morning feeling sick to my stomach and in massive pain. Most mornings I am in the bathroom within 15 minutes of getting up, and I spend my days until almost 1 p.m. fighting the nausea and vomiting. This is what led to my doctor ordering another CT, this time with contrast. I went this past Tuesday to get the results from that CT. Apparently the CT showed more thickening of the bowel walls along with inflammation. This is not good news! They have scheduled me for another Endoscopy and Colonoscopy for later this month. This will be the 3rd one since February. I don't know if you have ever had a colonoscopy before, but the prep you have to do for this test is horrendous! If you are scheduled to have a colonoscopy I suggest that you make your bathroom a nice little oasis. In other words, a small pillow to hold against your stomach for the cramping, maybe a nice scented candle to help destress you and for other obvious reasons, maybe a pen and a few puzzle books, a hand-held game or your tablet or if you like to read, a pile of good books, or just one really good book. I'm not looking forward to having to do this again, but I would really like to get a handle on all of my symptoms again so that I can go back to living a fairly normal life. Until tomorrow....
Many Blessings and Remember to LIVE, LAUGH and LOVE!
C
If you have not read any of my earlier post, I have had diagnosed Crohn's Disease for 34 years. I spent the majority of my teen years in and out of the hospital with the symptoms of Crohn's. Back then they didn't know much about Crohn's and there were only two medications to treat symptoms. Azulfidine and Prednisone. As it ends up, I am allergic to sulfa-based drugs so the Azulfidine did not work and there was a point where I was taking 80 mg daily of Prednisone. Prednisone has very ugly side effects and long term usage can lead to other conditions down the road such as Osteoporosis, which I now have. When I was 24 I had my first Small Bowel Resection surgery. Surgery does not "cure" Crohn's Disease, but it can make a person asymptomatic for a long period of time. Off and on through the years I did pretty well. I had symptoms and there were some periods where the doctors put me on Prednisone to take down the inflammation in my small intestine, but nothing major. I did have one doctor at a very reputable research clinic try to tell me that all of the doctors before him were wrong about 7 years ago, and that I never had nor have Crohn's Disease. This included his predecessor who was well known in the medical community as well as a published doctor in all of the medical journals on the disease. It just so happened at that point in my life, other than bouts of diarrhea, I was doing well. In fact, I was doing wonderful. I hadn't felt that good in years! I did tell my husband that I wasn't going back to him. He was young, arrogant and apparently didn't even bother to look at my medical records. For 7 years I did not go to a GI doctor. If I was having really bad episodes of symptoms, I just went through my primary care doctor, and took a lot of Imodium AD.
That is the past in a nutshell, which brings us to the year of 2014. I started having symptoms about one year ago, though I will admit I wasn't necessarily looking at them as Crohn's symptoms. That was mainly due to the fact that my body was acting differently than it had in the past. Sure I was having bouts of diarrhea, but I was also having bouts of constipation. In fact, I was thankful that I was going less. I was working at a new job and I had been worried about what I was going to do if I had to make emergency runs to the bathroom. I would open the store 4 days a week, and I would be by myself in there from 6:45 - 9:30 by myself. How was I supposed to run a store if I was in the bathroom constantly? So, even though I should have been paying more attention to my body and what it was telling me, I didn't. The only thing I kept telling my doctor is that I had this excruciating pain in my right back and side. For months they treated it as a pulled muscle. When I told them that muscle relaxers and the pain medicine they had me on were not doing a thing, they assumed it must be my spine. They sent me for an MRI of my thoracic spine as the next step. The MRI showed some slight deterioration, but since I have osteoporosis that would be expected. The pain kept getting worse and I couldn't sit, or sleep without extreme pain.
In January I came home one day from work, so exhausted that I just collapsed into a chair. I had been on my feet for 10 hours straight with only two quick breaks, just for the simple fact that the store had been extremely busy and no one had a chance to really go to lunch. By the time Mr. Right came home 30 minutes later, I was doubled up in pain, and every time I tried to move or sit up straight, I could not do it. We have a good choice of hospitals where I live, one of them being the Mayo Clinic, but I chose to go to one of the ones that my primary has practicing rights at. Thankfully they got me into an ER room right away, and ordered a CT of my abdomen. The CT showed inflammation of my small bowel at the terminating end. Of course this is where my previous resection had been. They admitted me and assigned a GI doctor to me. After a week of IV antibiotics and being poked twice a day for blood work they sent me home with a prescription for Pentasa and Prednisone and a follow-up appointment with the GI doctor. It ends up that for one I could not afford the Pentasa. It was over $1000 for a 30 day supply, plus I couldn't take them since they are a sulfa-based medication. I let the doctor's office know, and they informed me to just take the Prednisone and we would hope that the inflammation went down. At my doctor appointment he decided that we would take the Humira route instead to see if that would help. It takes a long time to get a prescription for Humira filled. You have to have a TB skin test and chest x-rays, then the company that manufactures it must approve that you are a good canidate for the medication. Once that happens, they send everything in to your insurance company who must approve it, and then it finally gets sent to a specialty pharmacy and they overnight it to you via FedEx, because it needs to stay refrigerated.
Before they could get all these steps done for this prescription I ended up back in the ER, almost exactly one month from the first visit there. Once again a CT scan showed increased inflammation, but this time it was also in my colon. So for another week I received IV antibiotics and a soft-foods diet before they discharged me. About a week later I received my approval for the Humira and it was over-night shipped to me. I'll admit that I was more than a little nervous about having to give myself injections, but I knew that I would get over it and do what I needed to do. Before I could start on them I needed to set up an appointment with a nurse who would educate me on the proper procedure, etc. This took another week to get in there. I was finally to the point where I was going to do this. The first initial dose is 4 different injections given one right after the other, which is pretty nerve racking. I had psyched myself up to doing a injection, but 4 of them! I no sooner was started on my injection routine before I once again became so doubled up with pain, and non-stop diarrhea that I once again made a trip to the ER. I had been going to the bathroom for 36 hours straight, and I'm really not sure how. You would think that after the first 8 or 9 trips to the bathroom that your body would have nothing left in it.
This takes us almost up to date on the present. On April 1, I had another small bowel resection and two weeks after being admitted to the hospital I was allowed to go home. This time it was with a prescription for Entocort. To know more about Entocort please go to the link provided.
So, one would think that between surgery and all these different medications that I would be feeling like a million bucks. Wrong! I wake up every morning feeling sick to my stomach and in massive pain. Most mornings I am in the bathroom within 15 minutes of getting up, and I spend my days until almost 1 p.m. fighting the nausea and vomiting. This is what led to my doctor ordering another CT, this time with contrast. I went this past Tuesday to get the results from that CT. Apparently the CT showed more thickening of the bowel walls along with inflammation. This is not good news! They have scheduled me for another Endoscopy and Colonoscopy for later this month. This will be the 3rd one since February. I don't know if you have ever had a colonoscopy before, but the prep you have to do for this test is horrendous! If you are scheduled to have a colonoscopy I suggest that you make your bathroom a nice little oasis. In other words, a small pillow to hold against your stomach for the cramping, maybe a nice scented candle to help destress you and for other obvious reasons, maybe a pen and a few puzzle books, a hand-held game or your tablet or if you like to read, a pile of good books, or just one really good book. I'm not looking forward to having to do this again, but I would really like to get a handle on all of my symptoms again so that I can go back to living a fairly normal life. Until tomorrow....
Many Blessings and Remember to LIVE, LAUGH and LOVE!
C
Thursday, July 10, 2014
Chaos Times 4 - Part 2
So, we covered Saturday's chaos in yesterday's post. Which means we are on to Sunday. I really should love Sundays since I get to spend the whole day with Mr. Right. Lately though they are not my favorite day of the week.
About one month ago my stepson and his two-year-old son moved in with us. Even though the economy is slowly improving, it's still tough out there, especially for single parents. So until he can save up some money, they will be living with us, and I'm okay with that. We've done it for two of the others in the past, so once again we will all get through this. Anyway, this past Sunday my husband had invited some friends to come over after church so we used our coffee time to clean the house. It can get pretty messy with a two-year-old running around, plus the dogs who almost have as many "toys" as the grandbabies.
Unfortunately, cleaning increases my pain. I'm not sure if it's all the bending or what, but then I end up miserable for most of the remainder of the day. On top of this, for the past month I have been sick to my stomach every day. It starts from the moment I wake up and usually last until around noon. I take my Zofran like I'm supposed to, but even they don't seem to help as much as they have in the past. Needless to say, it is frustrating me to no end.
It's been ending up that every Sunday I say I'm not going to church. It's not that I don't like church, I do! It's just that I stand up front on a stage and sing, and the whole time I'm usually gritting through the pain and the nausea. I am really tired of feeling this way all of the time. So, Sunday was probably the calmest day over a four day period. On to Monday!
Monday started out like any other day. I got sick to my stomach. Made my morning runs to the bathroom and started working on laundry. I was having a lot of pain in spite of my pain medications and I really truly did not feel like moving much, but there are things that just have to be done in a household so I do them. It takes me longer to do them now than it has in the past, but they do get done. So basically I did not feel like moving or doing anything. Just about the time I sat down, put the series I'm watching on Netflix on, and got settled in a comfortable position with my yarn and a new project my phone rings. It was my son calling to see if I would take the baby to the Emergency Room. Obviously I'm not going to tell him no on something like that. Apparently the baby (2 months old) had started to projectile vomit on Sunday and was still doing it on Monday, along with a high pitched cry. If you have ever had a baby you know that when their cry hits that high pitch it is usually an indication of pain. So I threw my meds, my tablet and a few other things into a tote bag and headed out the door.
I dropped mom and baby at the emergency room entrance then went on my way to find a parking spot. It took me 15 minutes to find a parking spot! What irritated me that it is clearly marked "Emergency Room Parking Only" and as I was perusing the parking garage for a place to park, I see nurses and other hospital personnel parking their cars in spots that would open up, and then be on their merry way into the hospital. By the time I finally parked and made my way into the ER, they had already put the baby in a room, and there were nurses coming in and out non-stop. The doctor came in a few minutes after me, and told us she was ordering x-rays and an ultrasound. I stayed in the room while they took him for testing, and it felt like they were gone for an hour. Of course this gave my mind time to wander and go crazy. The first thoughts that were coming to mind were of course Pediatric Crohn's Disease or Ulcerative Colitis, along with the possibility of a hernia.
When they finally came back to the room we had to play the waiting game. I could tell how distressed the baby's mom was, so I kept all of my thoughts to myself. The nurses came in, started an IV on him and let us know that we should know something soon. A short time later the doctor came back in the room to let us know that the ultrasound was positive for Pyloric Stenosis, and that he would have to have surgery either that night or the next morning. It was so hard to see the babies parents deal with this. I know that at this same age, my son, his father, was hospitalized with pneumonia and how stressed I was, so I can only imagine how I would have felt if I had been told that he had to have surgery.
I finally went home around 8:30 that night so that I could get some sleep, and told the kids that I would be back up there first thing in the morning which I was. I have to tell you that Tuesday was the longest day ever! Even when they took him down to pre-op we had to wait another hour before the anesthesiologist came in to talk to them, and then another 20 minutes before they were finally ready to take him to surgery. Praise God, the surgery did not take long at all, and the doctor came out to the waiting room to let us know that everything had gone great, but it would be another 45 minutes before he would be out of post-op and taken back to his room. That was another period of time that seemed to drag on forever. Since waking up from surgery he has been eating without throwing up all over the place, which means the surgery was completely a success.
I didn't realize until I went home late that afternoon, (I had an appointment with my GI doctor for my CT results), how exhausted I was. I was calm on the outside the whole entire time when I was at the hospital with my son, his girlfriend and their baby, but on the inside I had been tense and praying like crazy that the Pyloric Stenosis was all that there was, and that the surgery would go exactly as planned. With any luck this will be the only time that this child will have any problems with his digestive system. Since they believe that CD may be hereditary, I can only pray that my children and grandchildren don't get it, and if they do, maybe through blogs like this one that make people aware of this disease, there will be more research and someday a cure. I was also thankful that on Tuesday my CD symptoms had decided to play nice for at least one day.
About one month ago my stepson and his two-year-old son moved in with us. Even though the economy is slowly improving, it's still tough out there, especially for single parents. So until he can save up some money, they will be living with us, and I'm okay with that. We've done it for two of the others in the past, so once again we will all get through this. Anyway, this past Sunday my husband had invited some friends to come over after church so we used our coffee time to clean the house. It can get pretty messy with a two-year-old running around, plus the dogs who almost have as many "toys" as the grandbabies.
Unfortunately, cleaning increases my pain. I'm not sure if it's all the bending or what, but then I end up miserable for most of the remainder of the day. On top of this, for the past month I have been sick to my stomach every day. It starts from the moment I wake up and usually last until around noon. I take my Zofran like I'm supposed to, but even they don't seem to help as much as they have in the past. Needless to say, it is frustrating me to no end.
It's been ending up that every Sunday I say I'm not going to church. It's not that I don't like church, I do! It's just that I stand up front on a stage and sing, and the whole time I'm usually gritting through the pain and the nausea. I am really tired of feeling this way all of the time. So, Sunday was probably the calmest day over a four day period. On to Monday!
Monday started out like any other day. I got sick to my stomach. Made my morning runs to the bathroom and started working on laundry. I was having a lot of pain in spite of my pain medications and I really truly did not feel like moving much, but there are things that just have to be done in a household so I do them. It takes me longer to do them now than it has in the past, but they do get done. So basically I did not feel like moving or doing anything. Just about the time I sat down, put the series I'm watching on Netflix on, and got settled in a comfortable position with my yarn and a new project my phone rings. It was my son calling to see if I would take the baby to the Emergency Room. Obviously I'm not going to tell him no on something like that. Apparently the baby (2 months old) had started to projectile vomit on Sunday and was still doing it on Monday, along with a high pitched cry. If you have ever had a baby you know that when their cry hits that high pitch it is usually an indication of pain. So I threw my meds, my tablet and a few other things into a tote bag and headed out the door.
I dropped mom and baby at the emergency room entrance then went on my way to find a parking spot. It took me 15 minutes to find a parking spot! What irritated me that it is clearly marked "Emergency Room Parking Only" and as I was perusing the parking garage for a place to park, I see nurses and other hospital personnel parking their cars in spots that would open up, and then be on their merry way into the hospital. By the time I finally parked and made my way into the ER, they had already put the baby in a room, and there were nurses coming in and out non-stop. The doctor came in a few minutes after me, and told us she was ordering x-rays and an ultrasound. I stayed in the room while they took him for testing, and it felt like they were gone for an hour. Of course this gave my mind time to wander and go crazy. The first thoughts that were coming to mind were of course Pediatric Crohn's Disease or Ulcerative Colitis, along with the possibility of a hernia.
When they finally came back to the room we had to play the waiting game. I could tell how distressed the baby's mom was, so I kept all of my thoughts to myself. The nurses came in, started an IV on him and let us know that we should know something soon. A short time later the doctor came back in the room to let us know that the ultrasound was positive for Pyloric Stenosis, and that he would have to have surgery either that night or the next morning. It was so hard to see the babies parents deal with this. I know that at this same age, my son, his father, was hospitalized with pneumonia and how stressed I was, so I can only imagine how I would have felt if I had been told that he had to have surgery.
I finally went home around 8:30 that night so that I could get some sleep, and told the kids that I would be back up there first thing in the morning which I was. I have to tell you that Tuesday was the longest day ever! Even when they took him down to pre-op we had to wait another hour before the anesthesiologist came in to talk to them, and then another 20 minutes before they were finally ready to take him to surgery. Praise God, the surgery did not take long at all, and the doctor came out to the waiting room to let us know that everything had gone great, but it would be another 45 minutes before he would be out of post-op and taken back to his room. That was another period of time that seemed to drag on forever. Since waking up from surgery he has been eating without throwing up all over the place, which means the surgery was completely a success.
I didn't realize until I went home late that afternoon, (I had an appointment with my GI doctor for my CT results), how exhausted I was. I was calm on the outside the whole entire time when I was at the hospital with my son, his girlfriend and their baby, but on the inside I had been tense and praying like crazy that the Pyloric Stenosis was all that there was, and that the surgery would go exactly as planned. With any luck this will be the only time that this child will have any problems with his digestive system. Since they believe that CD may be hereditary, I can only pray that my children and grandchildren don't get it, and if they do, maybe through blogs like this one that make people aware of this disease, there will be more research and someday a cure. I was also thankful that on Tuesday my CD symptoms had decided to play nice for at least one day.
Many Blessings and Remember LIVE, LAUGH and LOVE!
C
Wednesday, July 9, 2014
Chaos times 4 - Part 1
Wow! It's been a crazy last few days for me and the family. I usually don't have time to write on the weekends when the hubby is at home, and he had taken the 4th off, so that meant three days of him at home. This is not a bad thing, but I do try to spend it with him trying to get things done around the house.
Saturday started out with me taking my sidekick Toby to the vet. We usually schedule drop-off appointments, meaning that we drop them off around 7:30 a.m. and then they call us whenever they are done. This was just a routine wellness checkup, checking his overall health, and giving him a couple of his vaccination boosters. Around 10:00 we received a call from the vet telling us that Toby's lab test showed that he has elevated liver enzymes. It proceeded to tell me that they were up 100 counts from his last blood test and that he would need an ultrasound, and some types of medicine that I can't even begin to pronounce. Then in the next breath he tells me there is nothing to worry about, and we don't need to do the ultrasound at this point. Okay, so which is it? The kind doctor then told me that he would put the assistant on the line to go over things with me (i.e. money). So Terri gets on the line with me and gives me all the information she is supposed to give me and we are looking at a very large amount of money. Money that quite frankly we don't have at the moment. One of the reasons that I really like working with Terri is that she is honest. After she gave me the details for the liver enzymes, she told me that in all honesty it could be a false positive and that if it were her dog (she has a couple of them) she would probably wait until his next check-up and blood workup to see if they stay the same or if the count continues to climb. So in 30 days, we will do more blood work on Toby and see where we stand with the liver enzymes. So we made the decision to wait until his follow-up blood work to see how we are going to deal with this.
After the discussion on the liver enzymes, Terri informed me that Toby's ear was infected again. This is something that has been a continuous battle since he was about 1 year old. We have used every antibiotic they have for this, so now we are starting at the beginning of the medicine list again to see if it will work. It's kind of like with humans. If we take Amoxicillin every time we get a bacterial infection, then eventually are body becomes resistant to Amoxicillin and they have to put us on a different antibiotic. Of course the vet wants to do x-rays and test and possible surgery, but that will not be a guarantee that Toby will not lose his hearing in the infected ear. At the most, it will give him a year or two longer before going deaf in that ear. This is considered a pretty extensive surgery and even with my pet care plan, it would be a few thousand dollars. Once again, not money we have just laying around. One of Terri's dogs has the same thing and he is now 8 years old. She opted out of doing the surgery and not hearing out of one ear has not affected her dogs lifestyle or quality of life. It's not that we don't love our pets, because we do. They are members of our family and we want the best for them, but without taking out a loan, surgery is not something most of us can afford. So in the mean time we put Toby's drops in his ears every night, which is a complete battle as he is quite strong, and once a week we flush his ears with a special liquid which he really hates.
As I told Mr. Right, it's just like having a child. You don't know what the future holds as far as health issues. We fell in love with Toby from the time we first saw him at the Animal Control Center and he has such a great personality. I wouldn't abandon him just because he is not "perfect" anymore than I would if he were my child. I have a feeling that between my Crohn's and Toby's issues that he is having that I'm going to be spending a lot of time going to appointments for both of us in the future. Until tomorrow...
Many Blessings and remember LIVE, LAUGH and LOVE!
C
Saturday started out with me taking my sidekick Toby to the vet. We usually schedule drop-off appointments, meaning that we drop them off around 7:30 a.m. and then they call us whenever they are done. This was just a routine wellness checkup, checking his overall health, and giving him a couple of his vaccination boosters. Around 10:00 we received a call from the vet telling us that Toby's lab test showed that he has elevated liver enzymes. It proceeded to tell me that they were up 100 counts from his last blood test and that he would need an ultrasound, and some types of medicine that I can't even begin to pronounce. Then in the next breath he tells me there is nothing to worry about, and we don't need to do the ultrasound at this point. Okay, so which is it? The kind doctor then told me that he would put the assistant on the line to go over things with me (i.e. money). So Terri gets on the line with me and gives me all the information she is supposed to give me and we are looking at a very large amount of money. Money that quite frankly we don't have at the moment. One of the reasons that I really like working with Terri is that she is honest. After she gave me the details for the liver enzymes, she told me that in all honesty it could be a false positive and that if it were her dog (she has a couple of them) she would probably wait until his next check-up and blood workup to see if they stay the same or if the count continues to climb. So in 30 days, we will do more blood work on Toby and see where we stand with the liver enzymes. So we made the decision to wait until his follow-up blood work to see how we are going to deal with this.
After the discussion on the liver enzymes, Terri informed me that Toby's ear was infected again. This is something that has been a continuous battle since he was about 1 year old. We have used every antibiotic they have for this, so now we are starting at the beginning of the medicine list again to see if it will work. It's kind of like with humans. If we take Amoxicillin every time we get a bacterial infection, then eventually are body becomes resistant to Amoxicillin and they have to put us on a different antibiotic. Of course the vet wants to do x-rays and test and possible surgery, but that will not be a guarantee that Toby will not lose his hearing in the infected ear. At the most, it will give him a year or two longer before going deaf in that ear. This is considered a pretty extensive surgery and even with my pet care plan, it would be a few thousand dollars. Once again, not money we have just laying around. One of Terri's dogs has the same thing and he is now 8 years old. She opted out of doing the surgery and not hearing out of one ear has not affected her dogs lifestyle or quality of life. It's not that we don't love our pets, because we do. They are members of our family and we want the best for them, but without taking out a loan, surgery is not something most of us can afford. So in the mean time we put Toby's drops in his ears every night, which is a complete battle as he is quite strong, and once a week we flush his ears with a special liquid which he really hates.
As I told Mr. Right, it's just like having a child. You don't know what the future holds as far as health issues. We fell in love with Toby from the time we first saw him at the Animal Control Center and he has such a great personality. I wouldn't abandon him just because he is not "perfect" anymore than I would if he were my child. I have a feeling that between my Crohn's and Toby's issues that he is having that I'm going to be spending a lot of time going to appointments for both of us in the future. Until tomorrow...
Many Blessings and remember LIVE, LAUGH and LOVE!
C
Friday, July 4, 2014
Independence Day
Today is July 4th. Independence Day. The day that we became The United States of America. A day when friends and family get together, and cook-out, go to the beach and watch fireworks.
To be honest, I'm really not looking forward to it. Yes, we are going over to a friends house for a cook-out, and there will be music and noise, kids giggling and splashing in the pool, and lots of heat. Since I live in Florida, there will probably be a pop-up thunderstorm in the afternoon that threatens to ruin all of the cook-outs. This is a typical, daily event in Florida when you mix the sea breeze with the high heat and humidity. All in all it really doesn't sound like a bad day. In fact it sounds like it would be a great time. I mean what's better than food, fun, family and friends, right?
My problem is a mix of the food and the heat. For some reason, even though I love warm weather, the warm/hot weather does not like me. It seems to make my Crohn's symptoms worse most of the time. Combine that with tables full of food, most of which I cannot eat, and you have an unhappy person. Most times I will leave these functions feeling hungry, depressed and just plain miserable.
The problem is most people don't understand Crohn's and I have heard all the comments of how I'm such a picky eater. Not really. I love food! It just so happens that food does not always love me. Think about your typical summer cook-out type foods. You have watermelon, cantaloupe, hot dogs, potato salad with things like celery in it, fat, juicy hamburgers dripping with grease. They all sound tantalizing and make your mouth water, but I cannot eat the majority of food that is spread out on the tables.
Here is the thing; most doctors' recommend a low-fat, low residue diet to help control the symptoms of Crohn's. Low-fat knocks out that fat juicy hamburger. Low-residue equals low fiber. There go all fresh fruits and vegetables. It also knocks out things like popcorn. Red meats (hamburgers) are harder to digest and processed foods (hot dogs) are usually a big no-no. At least for me. I have found through the years that there is another common food ingredient that will trigger an episode with me, and that is MSG, monosodium glutamate. This is used as a preservative and a flavor enhancer in a lot of foods. Many people think that it is just found in chinese food, but it's actually pretty common. I have found that it is in a good majority of chips, rice mixes, seasoning packets for meats and salads, etc. In the future I am hoping to add another page on here that contains recipes that are tasty, easy to fix and meet the low-fat, low-residue diet requirements.
With all of that being said, what triggers an episode for me may not necessarily trigger an episode in someone else who has Crohn's. I do know that this is the diet most Gastroenterologist recommend for patients with Crohn's, so when your loved one or friend rejects the food you have fixed, don't take it personally. They truly aren't out to hurt your feelings. They are trying to save themselves from the misery of abdominal pain, bloating and diarrhea.
Keep these things in mind as you celebrate today. Enjoy your family and friends, as I will enjoy being with mine. Keep the alcohol to a minimum (another trigger), and don't be embarrassed to explain why you cannot have that huge, juicy chunk of watermelon. I think your friends and family would rather see you pass it by, then see you being miserable.
Happy 4th of July! The day that we became the great country of The United States of America!
Many Blessings and remember LIVE, LAUGH and LOVE!
C
To be honest, I'm really not looking forward to it. Yes, we are going over to a friends house for a cook-out, and there will be music and noise, kids giggling and splashing in the pool, and lots of heat. Since I live in Florida, there will probably be a pop-up thunderstorm in the afternoon that threatens to ruin all of the cook-outs. This is a typical, daily event in Florida when you mix the sea breeze with the high heat and humidity. All in all it really doesn't sound like a bad day. In fact it sounds like it would be a great time. I mean what's better than food, fun, family and friends, right?
My problem is a mix of the food and the heat. For some reason, even though I love warm weather, the warm/hot weather does not like me. It seems to make my Crohn's symptoms worse most of the time. Combine that with tables full of food, most of which I cannot eat, and you have an unhappy person. Most times I will leave these functions feeling hungry, depressed and just plain miserable.
The problem is most people don't understand Crohn's and I have heard all the comments of how I'm such a picky eater. Not really. I love food! It just so happens that food does not always love me. Think about your typical summer cook-out type foods. You have watermelon, cantaloupe, hot dogs, potato salad with things like celery in it, fat, juicy hamburgers dripping with grease. They all sound tantalizing and make your mouth water, but I cannot eat the majority of food that is spread out on the tables.
Here is the thing; most doctors' recommend a low-fat, low residue diet to help control the symptoms of Crohn's. Low-fat knocks out that fat juicy hamburger. Low-residue equals low fiber. There go all fresh fruits and vegetables. It also knocks out things like popcorn. Red meats (hamburgers) are harder to digest and processed foods (hot dogs) are usually a big no-no. At least for me. I have found through the years that there is another common food ingredient that will trigger an episode with me, and that is MSG, monosodium glutamate. This is used as a preservative and a flavor enhancer in a lot of foods. Many people think that it is just found in chinese food, but it's actually pretty common. I have found that it is in a good majority of chips, rice mixes, seasoning packets for meats and salads, etc. In the future I am hoping to add another page on here that contains recipes that are tasty, easy to fix and meet the low-fat, low-residue diet requirements.
With all of that being said, what triggers an episode for me may not necessarily trigger an episode in someone else who has Crohn's. I do know that this is the diet most Gastroenterologist recommend for patients with Crohn's, so when your loved one or friend rejects the food you have fixed, don't take it personally. They truly aren't out to hurt your feelings. They are trying to save themselves from the misery of abdominal pain, bloating and diarrhea.
Keep these things in mind as you celebrate today. Enjoy your family and friends, as I will enjoy being with mine. Keep the alcohol to a minimum (another trigger), and don't be embarrassed to explain why you cannot have that huge, juicy chunk of watermelon. I think your friends and family would rather see you pass it by, then see you being miserable.
Happy 4th of July! The day that we became the great country of The United States of America!
Many Blessings and remember LIVE, LAUGH and LOVE!
C
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