How bad can it get?

Cumulative steroid use gets you too regarding bone loss and tge other wonderful irreversible pred side effects. I have about 2.5 years cumulative pred usage over years I've had UC and flared intermittently which equals an osteopenia for me...

iPoop said...
As an example, we had a poster (forget the username) who drove around in a van with a makeshift bathroom in it for uc urgencies (one of those portable chem-based toilets used for camping/sailboats).

That's not an example of severe disease. Urgency is the number one symptom of UC. It's the location of the inflammation in UC that causes urgency, not the severity.

Connor77 said...

notsosicklygirl said...
We were asked for worst case scenarios. I got septic shock from UC meds + bacteria, and it truly can happen from a perforation, or just from having a compromised immune system, and it is terrible. You may not die though, you can pull through, I pulled through even though multiple organs had shut down.

My organs have stayed in perfect function every time despite how horrible things seem to get, so maybe that's an important difference. When you went septic from the perforation, how did they treat you? I don't quite understand how they would treat a hole in the bowel.

I imagine they must've given you tons of antibiotics.

Mine were always great too. It actually wasn't the UC itself, or the inflammation that caused the sepsis for me, it was the drugs. My immune system was so weak and battered that I got a small bacterial infection in my blood stream and literally, within days, I couldn't breathe at all. it wasn't a situation where I was in a bad flare and things progressed slowly. It was very fast. Always be careful if you have a fever, cold, infection, high heart rate, blood pressure changes, chest pain... I think it was due to all the drugs I was on for the UC, but the ID said it could have been from prednisone alone. Prednisone opens you up to all sorts of infections. I am sure in my case it was a combo of everything and the fact that my body was weakened. I am so much healthier now. Explaining what happens makes me sad. I shouldn't have let it get to that point. Surgery has been such a no-nonsense solution compared to all that I went through.

I am happy we got this back on track. I guess Rise could have stated what he was saying a little less abrasively and people could have responded to each other in a more compassionate way vs name calling, but that's in the past...

I have literally bounced from one extreme to the other. When I was initially diagnosed and things were very mild, I was told I wouldn't have to worry about surgery. As a realist (negative person truthfully), I did a ton of research and I expected the worst - surgery, and oddly at that time, I was open to it. After that, I got into remission with drugs, and I seriously went to the other extreme, I would do ANYTHING to avoid surgery. Then I sort of got a little ahead of myself thinking I was doing fantastically well, took the minimum drugs, tried all sorts of alternatives & believed everything helped when it probably did nothing. Finally after about 8 or 9 years with UC, and a few pretty severe flare ups in between, the mother of all flare ups came to be. That's the 18 month one that required every Rx under the sun, and still managed to be unstoppable. This is the flare that landed me with septic shock. After that hospital stay, I was in remission from the high doses of prednisone they gave me for the infection. I thought things would stay stable. i got off the pred and slowly, things got worse, until I was back to starving myself, in pain, housebound... I knew at that point that I had enough. It took a lot to push me over the edge, though I think even if I hadn't gotten sepsis, I would have had surgery by now. I can only take so much of watching life pass me by. If you're able to get things controlled in a month or two, that's pretty easy to control in comparison to those of us who are watching years of our lives pass us by.

The only thing that's predictable about IBD is its unpredictability.

Some people will have a lifelong mild course, no matter what. Other people will have a severe, aggressive course usually resulting in surgery (or, in Crohn's case, several surgeries). Some people will start off with a mild case but get worse; others start off with a severe case then go into remission for 30 years. Some people have lengthy remissions and hardly ever flare-up; other people never get into remission (except through surgery).

What makes it worse is that at the beginning there's no way of predicting how your disease will progress. It would be a lot easier to treat people if we could accurately predict the disease course and severity.

Post Edited (NiceCupOfTea) : 10/5/2017 3:46:23 PM (GMT-6)

My IBD is predictable

It's predictable, apart from the bit that you didn't predict.

Anyway, you didn't get my point. An individual's IBD may very well remain stable for weeks, months, years. But when the individual is first diagnosed with IBD, there's no way for the doctor to predict how that individual's IBD will progress. Somebody with mild IBD may really have a mild case; or it may just be the early stages of a more severe case. Likewise, somebody may start out with a crazy flare-up but then that will be the worst flare-up they ever get. (In fact I used to read occasionally that your first flare-up tends to be the worst one and subsequent flare-ups aren't as bad. Needless to say, it's nonsense but it was interesting that some people thought that.)

This is the kind of abuse I've dealt with in the hospitals.

That level of harassment certainly sounds wrong and borderline illegal. Not sure what to say, as my experience was literally the opposite: over the course of multiple hospital stays my hospital appeared to go out of their way to avoid telling me anything important: like, I might need my colon removed. Some stuff I only found out in retrospect, i.e. after I left the hospital and saw my GI in an outpatient setting. For example, that he and my colorectal surgeon had argued over whether I should have surgery. It apparently got quite heated, but my GI won the argument - he wanted to give more time for Remicade to work. Literally had no inkling of this while I was in hospital. In fact I never even saw the surgeon! (Didn't meet her until later, after my GI referred me to her.)

The toxic megacolon thing was another thing I never found about until later. As far as I was concerned, I was in hospital twiddling my thumbs for 9 days, bored out of my mind. Whenver I asked about going home, all anyone would tell me was I had to wait for a CT scan. Reckon that was an excuse though, as I could easily have done that as an outpatient: reckon they wanted to monitor me for a while in case the IV steroids failed and I needed emergency surgery.

PS: It's okay to derail your own thread! I'm not surprised you feel emotional after the stuff you've been through. And I'm glad to hear you are ready to have surgery after you have tried the anti-MAP antibiotics.