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!