marcell

iPoop said...
Marcell, it sounds like you have a lot of health anxiety and although it's good to learn about UC it can driveup anxiety within us. The best suggestion I can give you is that there is a solution for everyone, no matter how their UC ultimately turns out. Even in the unlikely even you need surgery (75% of patients do NOT need surgery, and only 25% do) then you will have a good quality of life, pursue your hopes and dreams, have a family, a successful career, and enjoy your hobbies and interests. Surgery doesn't make you 100% like before UC happened, but it does give you control of your bowels and predictability (something unending UC flares do not). After UC surgery there might have some mild inconveniences (weird noises, etc.) however that is very, very minor compared to the misery of unending flares and UC give us when it cannot be controlled.

The prognosis for UC can be unpredictable. Some of us have a very mild case of UC that uses only the mildest medications for decades without a lot of trouble. Some of us have moderate cases of UC that are a lot more trouble and require escalation to much stronger meds. Some of us nothing works and surgery quickly finds us (20% of folks). Nobody knows which course their UC will follow. Some start mild and stay mild their whole lives. Some start mild and progress to severe cases. Some start and stay severe.

Regarding PSC, if you don't already have PSC then you have only 4% odds of aquiring it now. The majority of people had PSC and LATER developed UC. Very rare to start with UC and THEN get PSC.

"An autoimmune mechanism is suggested, because approximately 75-90% of patients with PSC have inflammatory bowel disease (IBD). However, only approximately 4% of patients with IBD have or develop PSC. "
Source:/emedicine.medscape.com/article/187724-overview#showall

If you're worried about your UC getting worse over time then I cannot stress enough that you need to take a maintenance medication like oral asacol/mezavant. Clinical studies have shown that those who take a maintenance medication have the longest remissions, least frequent and mild flares, and the least odds of their UC progressing into a more severe case.

Are there some with pancolitis who take no medications? Sure. Are there many? No. The vast majority of UC patients require maintenance medications, and the odds state you will likely too. I always go with what the odds say will happen, rather than hoping that you will be one of the small minority who break from the majority and are lucky (outliers). I'm sure every boy wants to be a professional sports player when he grows up (soccer, baseball to name a few) but there's only a very slim amount who actually do.

iPoop said...
I think you're getting a bit ahead of yourself if you think you now have crohn's.

A story book case of UC has rectum involvement, and continuous inflammation until the terminal ileum and may/may-not include backwash. There would be small almost microscopic ulcers that are bleeding, obvious inflamed and swollen tissue, tissue would bleed when touched with the endoscope, the blood vessel pattern would be erratic and chaotic (a chronic architectural change). The biopsies would show shallow inflammation, a variety of crypt anomalies, from infiltration of immune cells, crypt abscesses, crypt inflammation, and crypt branching. You'd have yourself a pretty home-run case of UC when the stool test is negative for pathogens, visual colonoscopy and biopsy reports all state the above.

A story book case of Crohn's would have a number of unique findings different than the above. Small intestinal inflammation is common as is throat inflammation (UC is limited to the large intestine). Rectum is usually spared in crohn's. Terminal ileum is often involved in crohn's. You'd see patchy, having areas of inflammation, followed by normal areas, followed by normal areas in crohn's (uc is continuous). Crohn's would exhibit aphthous ulcers (large white ulcers, like a cancer-sore on the lip). Crohn's often has a distinct cobblestoning appearance of irregular tissue on the surface (like cobblestones on an old road). Crohn's has deep-tissue-damage in biopsies (UC is shallow). Crohn's doesn't involve crypts, like UC does.

While there's are shades of gray between the two (rare), the majority of cases have a clear-cut finding that places one in the UC or Crohn's camp without any question.

quincy said...
Didn't your last scope show active chronic inflammation?
q

marcell said...
One of the doctors prescribed deflazacort 30 mg once a day and imusupress 80 mg 3 times a day. Another doctor doesn't agree with that because I don't have all those symptons and prescribed mesalazine 800 mg once a day. Another doctor things the second doctor is right. Maybe the 1st doctor didn't give me enought attention to know that even though biopsies say moderate, I don't have moderate symptons. That's a problem many doctors have: they don't listen enough.

iPoop said...
"Lymphoid phollicular hyperplasia" isn't a typical IBD thing from what I am seeing. I've never heard of it before on this forum. Might be more a sign of an infection *shrug* I'd ask a doctor on that one.

ks1905 said...

notsosicklygirl said...
In those cases, I am not sure if it's UC and Crohn's, or a misdiagnosis, or development of Crohn's after colon removal for some reason. The scary part is that it is a bit of a mystery. At the same time, people who deal with these situations often find it easier to manage regardless. Look at ks1905 here, he has pouchitis, which is now being called "crohn's", and he lives much better treating that with his pouch vs living with active UC throughout his colon. While surgery is not perfect, for me, I'm in my third year since, and things are much more predictable. No one knows what the future holds. With UC, I knew I lived each day with a ticking time bomb, now I don't worry so much. I once had my UC go into remission almost spontaneously, and it lasted a while, but ultimately, I was back at square one after some time. I knew, for me, it wasn't going to be so simple. I was in an 18 month flare that left me scared to leave the house. I wasn't willing to give up more of my life. Consistency with a pouch varies, sometimes it's liquid, sometimes it's like pebbles, sometimes it's somewhere in between. I don't have issues with vitamins. The majority of absorption occurs in the small intestine, which we have. My bones are fine, probably weaker than they should be from past pred use unfortunately.

I wouldn't worry about surgery. It's probably under 20% of people who need it, and there are more meds available all the time.