Do you have reversed IBD?

[Fosterfamily2303]

Have you been told your IBD is backwards..as it eats itself from out outside in vs inside out? I was told my colonoscopy don't look bad but a surgeon who saw the outside of my bowels said it looks awful.

Anyone else experience this??

 

[nogutsnoglory]

I never heard of such a thing but I have learned crohns can be a sneaky and strange beast. What was the surgery for if your colonoscopy came back ok?

 

[Fosterfamily2303]

They went in looking for enhesions. My transverse colon was all white. At the time it was odd to all surgeons and dismissed but now my GI thinking after failed temps.at EVERY med possible that may have been a clue and it is eating it's way from the outside in. (Which she said she never seen)

 

[Lady Organic]

about 15 years ago, in my first years with colitis, at some point after 2 years of disease, a white dotty sheer/veil appeared and was covering my mucosa. My GI who had long experience and was a professor didnt know what it was. he found it quite strange and definately unusual. We biopsied for possible bacteria, but nothing came positive. he also thought of side effect of sulfasalazine. But finally it appeared it was just plain CD symptom. When I started on 6-mp I reached full remission and the white dots dissapeared. They have never returned. I was sick a few years ago and they didnt come back either at that time. I talked about it to my current new GI and he said white patchs are pretty common in IBD.... so I dont really get it... but he didnt see cam pictures of what I had exactly to truly have an idea so I tend to go with the opinion of my late GI on this one and that it was a unusual symptom.

did the surgeon remove a part of your colon to see completly inside out? How did the surgeon see it?

so what the plan for you next?

 

[Fosterfamily2303]

No the surgeon opened me up and was able to see the outside only of the colon. The ENTIRE outside of the transverse colon was white.

My next step is For them to decided if removing part of my colon would help. Maybe the transverse colon needs removed ?

 

[PVail]

Hi
This story is so close to home with me . I will cut a long story short and get to the point. When i got really ill in may this year I finally got the surgeon to do a laporoscopy to remove my appendix.
He said I had a large amount of scar tissue / adhesions on the outside of my organs and this was very unusual. They cut away some of it to get at my appendix which was situated arund the back of my ceacum and enclosed in scar tissue. There was evidence to say that it had previously ruptured and sealed up again.
So anyway its just over two months since my op and I have now a permanent pain in my side and abdomen. I have been sent back to the hospital several times by my doctor and they keep sending me home. I had a ultra sound and a barium follow through done also .
I am very troubled by this and do not understand whay if they could see waht the problem is when they where inside did they not remove all of this stuff and why am i not on any sort of medication for this . One doctor told me this could be very serious but that was it .
After five years of pain and multiple scans, scopes and god knows how many bloods being done and all clear can they not conclude that this is not IBS , IBD. Its scar tissue growing on the outside of my organs with out any previous surgery. What will they do I dont know and im sure they dont know either.
Sorry to rant but im pretty pissed off with the Health Service in this country.

 

[Lady Organic]

scar tissue also called pseudo-polyps, inside colon, can come after a long time of IBD untreated chronic inflammation, dont know if this could apply to outside of the organs, but it could be as well.
best to both of you.