Hello to all,
This is my first time posting in this forum. I found it last night and read some of the posts and decided to introduce myself. Please bear with me. This may be long. To this day, I am not sure if I have Crohn's.
This is my story:
Eight years ago, I went away to summer camp. While there, I decided I didn't like the food and ate primarily bread and water. Yeah, I was a stupid kid. LOL. After a couple of weeks, I started to notice my stomach hurt and I hadn't gone #2 in a couple of weeks. After another week or so, this got worse...I started to feel nauseous, crampy, etc. I finally went to the camp nurse who gave me milk of magnesia. It didn't work. We tried prune juice. Again, nothing. She then gave me a fleet enema. Nothing. The next day another fleet enema. Again, nothing. At that point, they sent me to a doctor, who gave me more laxatives and a suppository. Nothing. I went to the hospital up there and they basically did the same thing. Camp was over a week later and they sent me home. By that point, I was in severe, gut-wrenching pain. I couldn't even bend over to tie my own shoes. My parents took me to the ER the next morning. After some tests, it was determined that *surprise* I was constipated. DUH. The GI at the hospital gave me a choice of a big enema, which could rupture my bowels or putting an NG tube down my nose, down my throat and into my stomach. He would then pump go-lightly through it. I chose the NG tube. It was a miserable three days, but at the end of it, I was pooping clear. I had a colonoscopy and it revealed two ulcers in my descending colon. The GI was convinced I had Crohn's. I was put on Asacol, Rowasa enemas, Prednisone, Zantac, Metamucil and Mineral Oil. The treatment seemed to make me sicker than I was before. I had to wear pads for leakage and I had to have a special pass in high school to run to the bathroom, so I wouldn't have to raise my hand and wait to get excused. It all seemed extreme, considering I had made my own mess by eating bread and water. How could THAT be Crohn's?
My parents took me for a second opinion by another doctor who reviewed my tests and ordered the Prometheus. My Prometheus came back negative. He determined I did not have Crohn's and weaned me off of all that stuff. I felt a lot better.
Through the years, I've always had a crappy diet. I'd get constipated frequently...for 3-5 days at a time. It was uncomfortable, but I dealt with it. Sometimes I'd get diarrhea. I also had a lot of normal BM's, though. I just attributed it all to having a high-fat, low-fiber diet. I thought maybe I had Irritable Bowel. When I'd go through the diarrhea, it usually seemed to occur when I was really stressed out. So, I attributed it to that too. I never had bloody stools or anything like that.
Within the last four years, I gained A LOT of weight. I'm 5'4 and I managed to get up to 295 pounds. I had always been overweight and moderately obese, but never had I been like that. For years, I had dieted and excersized and never really got anywhere. So, I started to research weight loss surgery. During my search, I came across a surgeon who had been a double board-certified colo-rectal surgeon. I asked him how my "issues" might be affected and when I mentioned the remote possibility of Crohn's he freaked out. He told me a bypass would be catastrophic with a Crohn's patient and said I should not pursue any surgery until I had ruled it out.
This led me down a road of TESTS.
Let me back up and say that prior to this, I was taking Aleve for everything in my life. At my weight, I had a lot of problems and I was in a lot of pain. Migraines, tendonitis, heel spurs, backaches, menstrual cramps...you name it. I took about 2-3 Aleve, 2-3 times a day EVERY day for at least a year, maybe more. I did not know at the time that this could cause ulcers.
I started with a colonoscopy and endoscopy. The endoscopy revealed a peptic ulcer. I had been taking Prilosec OTC for heartburn. They switched me to Protonix. The ulcer healed and I felt a lot better. The colonoscopy looked clean, but they did a biopsy anyway. The biopsy came back SUGGESTIVE of Crohn's or UC. There were microscopic ulcerations, but no evidence of fistulae or anything else.
My GI told me I had Crohn's and started me on Colazal. I had a small bowel barium passthrough. Everything was normal on that test. I then had the capsule endoscopy...the pill cam. The camera found about 12-13 ulcers in my small intestine. At that point, my GI was convinced it was Crohn's. He never entertained the idea that the Aleve may have done the ulcerative damage. He stopped the Colazal and put me on Pentasa.
I went for a second opinion with another GI. He ordered the Prometheus test...again, it came back negative. I was also not anemic. And, again, seriously obese. He wanted me to go for a third opinion.
The third opinion came from a colo-rectal surgeon and he said he could not determine whether or not I had Crohn's either.
After all of this, I decided to pursue a vertical sleeve gastrectomy, which simply removes 85% of the stomach, but leaves the digestive process completely intact and does not alter the intestines in any way. This is supposed to be a relatively safe operation for people who may have Crohn's or anemia, basically any condition that would prevent one from having a bypass (which results in malabsorption).
I had my surgery on August 15th, 2007. I have lost about 100 pounds since March. That's great, of course. However, now I am dealing with SEVERE constipation. I will go 10 days with no bowel movement and the only way I've been sucessful in getting one is with a fleet enema. I've been nauseated everyday since my surgery, which is not particularly normal. I take Zofran and Reglan for the nausea. I also continue to take Protonix to protect my new stomach and keep heartburn at bay (Prevacid did not work for that). This surgery does increase constipation in normal folk because your stomach can only take about 3 ounces of food at a time. Mine can only handle about 2 ounces. I also have to get 60 grams of protein in per day. So far, I can only get about 30 grams. I can't eat fruits, veggies or whole grains right now because of the protein requirement. Those foods would replace the room in my stomach that I need to have for my protein. I've been taking benefiber and I've started fiberchoice in the hopes that it will help. I DO get at least 68 ounces of water in each day. When constipated, NOTHING seems to help...except the fleets.
Anyway, I am starting to wonder how much of this is my surgery? Can this be Crohn's? I really never had a definitive diagnosis, but I am scared. Crohn's scares the crap out of me. I read some of your posts and you all seem so positive and I just wonder HOW?! The idea of having to go through some of those things really puts me off of life. You've all been through so much...
I stopped taking my Pentasa before my surgery because the capsules are HUGE. Since my surgery, I've been told I cannot swallow large pills anymore. My GI had said if I stopped taking my Pentasa, I'd have to go on Prednisone...which I DON'T want to do. So, I have not been back. I am thinking I may need to go back, though...especially if this continues.
I think the only way to really diagnose me would be to stay off NSAID's for an entire year and then re-do some of those tests.
I am sorry this is so long. I just had to get it off my chest.
Thanks for listening...
The GI I have been using is the head of the medical board of directors for the Crohn's and Colitis Foundation of America in our area. So, he's got the recommendations. Because of my NSAID abuse, I think right now diagnosis is next to impossible...at least that's what THREE GI's have pretty much told me at this point. Bleh.
I am thinking of trying Miralax...in addition to fiber supplements. Right now I am taking Benefiber and FiberChoice. It's not a whole lot, but it's what I can do with my restrictions right now. I am kind of afraid to take too much of a bulking formula because I worry about that backing me up even more.
What do you use? I know what I can do safely with my surgery, but I'd be interested to know what a Constipation-predominant Crohnie does. If you don't mind...