Lizzie, are you out there? Finally, a year after my surgery I have the answers I was looking for. I was referred to a specialist today and he explained thing to me better than anyone else have been able to.
Remember I said they thought I had Crohns when I had that mass removed last Summer? And then when I had the colonoscopy last January they said it showed negative for Crohns so they weren't sure if I had it or not? It's been so frustrating because they kept going back and forth on this.
Well, now I have some answers! The specialist today told me that he believed I did have Crohns when they removed that mass because of the granulomas in the mass. He said it would be extremely rare for it to be something else, like maybe 1 in 300. He said that because of where the mass was located (in the small bowel in the terminal ileum) and how it was contained (not spread anywhere else) that them removing the mass means I do not have Crohns right NOW. I am in remission. That's why it showed negative during the colonoscopy because I had no outbreak. The blood test isn't very accurate either, he said. He also said he wouldn't have treated me with the Entecort after my colonoscopy. He would have treated me with something different.
When I described my symptoms to him (nausea in the morning, diarrhea of and on, and belly discomfort), he said it's because of the surgery and the part of the small bowel they cut out. He said I will never go back to the way I was before. What they cut out had a very important job, he said. He said the liver breaks down the bile and then that part of the small bowel, the terminal ileum, helps break it down further and that there's a valve there (this is where the small intestine hooks up to the large intestine) that helps keep bacteria from going in to the large intestine. Well, they cut all that out. So I have more of a chance of bacteria getting in to my colon and now the bile isn't being processed as well so that's why I have the diarrhea, etc. He even drew me a picture and everything.
Finally, I understand! Finally, someone has been able to answer my questions!
He gave me a powder to take in the mornings that he said should help with the diarrhea because it helps break down the bile or something, I guess. If that doesn't work, he said we'll try antibiotics because it could be that there's bacteria in my colon.
So, in conclusion, he said that because of where the Crohns was located I have probably a 30% chance of it not coming back. When I said that didn't sound to good, he said it's actually better than if I had the Crohns in the large intestine, the colon, because then I would have about a 100% chance of it returning.
He said it may never come back! It might have just been that one time and it might not ever come back! I think that's good news! :) That's what I'm going to hope for and pray for.
I just wanted to share this with you and maybe others on here who have Crohns in the small intestine like I did.
Take care & God bless! :)
Hi April - what fantastic news!! It all sounds very logical to me. Hopefully, you are one of the "lucky" ones, and won't get any more flares. Just be aware of your body, and seek help if you have severe diarrhea or unexplained weight loss. My Crohn's started in the small intestine, around the terminal ileum, but unfortunately over the years it spread to the colon and the biopsy report on my last colonoscopy stated "PanCrohn'sColitis".
I vaguely remember one of my gastros, yonks ago, telling me that some Crohn's patients only get one or two flares and the disease burns itself out. I did have long periods of remission in my 30's, only on 2.5 mg of prdnisone daily,and didn't have any rectal haemorrhages until I was 40 yrs old. My problems today are the two strictures in the small intestine, due to previous adhesions through inflammation, and ulcers/crypt abscesses in the colon. Once we get the inflammation under control, we are going to address the strictures, hopefully by a stricturplasty rather than a resection.
You have a very good prognosis, so hold on to that, and enjoy your life.
I'm going to try and see a nutritionist, I think. I don't know if they'd be able to help or not but I'm so sick and tired of feeling so yucky no matter what I eat. I'm tired of it! I hate to complain when I know there are so many people out there in so much worse shape than me. I know I should count my blessings. At least I'm still here! :)
I just wish I could figure out what I could eat to make me feel good not bad. Ugh.
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