UC climbing need support

Hi All

I am so deflated.. I had a sigmoidoscope yesterday and interestingly enough the first 40cm were normal due to the enemas but now I have mild-moderate UC from 50-70cm which I never had before. So we now know how high enemas reach. I have to start prednisone 40mg and wean down over 2months, increase balsalazide to 9 per day and continue the Rowasa. I feel like its my fault for not being on probiotics or trying an anti inflammatory diet. I eat lots of rice because it makes me feel so much better. I love bread etc but other than that I eat pretty healthy. I am afraid of my reaction to prednisone and if this doesn't work my next step is Humira. I have to get the blood work for Humira prior to starting the prednisone just in case I have to jump on it.

I always had this weird pain near the splenic flexure but thought it was gas. Other than that I felt great all summer. The Rowasa really works but not where it doesn't reach. I guess the maintenance dose of balsalazide was not enough to safe the rest of the left side. This has all progressed in the last 2 years and its such a lonely, anxiety provoking disease. I was away last weekend watching my friends eat and drink whatever they wanted. Will my life ever be normal again??

"I feel like its my fault for not being on probiotics or trying an anti inflammatory diet."

but you've started those now, right ?

who knows, may not have made diddly difference - but you never know -

regardless, it sucks that things have progressed - just what this sh!t does sometimes - hang in there !

You may want to try Lialda, Asacol or generic mesalamine if it's beyond the area balsalazide treats. Humira is a good option too but it stinks to get caught up in reliance on expensive medications each month. It sounds like you've done great with enemas, and that's good. You could try diet and probiotics, but they don't work for everyone. I tried all of that and avoided medication for a period of time and it didn't prove to be effective for me. No reason to assume things would be different if you had done things differently. I knew from day 1 with UC that is was headed where it went, and it did. Think positive. You will be okay. I thought you were going to say you were a climber with UC and I thought to myself "that's probably not the best sport to do with this illness". I imagine myself up a wall with urgency...

notsosicklygirl said...
I tried all of that and avoided medication for a period of time and it didn't prove to be effective for me.

Yep. I tried a lot of natural thing (still flared) then I tried just meds (still flared)......and then pulled out ALL guns----antiinflammatory diet, probiotics AND meds (just melamine both ends) and at this point just passed my 3 month remission mark.

As NSSG points out.....people are all very different so it makes sense to try a variety of combos to find what works for you.

Good luck, OP.....I know how you feel !

My doc said that his practice is finding that Uceris does not work that well. I was only on a low dose of Balsalazide 4 pills a day and now I am on 9 so the UC progressed but I was not on a high dose. I cannot handle Lialda at all. I asked my doc about the different mesalamines etc and he said that the balsalazide works the same as the others and I tolerate it well so we just upped the dose. Doc never mentioned 6mp or Imuran and likes Humira better for some reason. He's an IBD specialist at HUP so I do trust him. He deals with some very sick patients.
Marji .. I am going to try the AID diet although rice always makes me feel better. Maybe I can include rice with the rest of the diet/?

The food or diet wouldnt have prevented the spread...
Did the doc take biopsies?

He could have tried you on the higher dosage of balsalazide and add the Uceris before putting you on the pred.....but if it gets the inflammation into submission, then hopefully, you could continue with the just 5ASA oral/rectal when off the pred.

q

So sorry to hear that!

I'll tell you about the steroids and my experience with it at the moment. The first couple of weeks on steroids was the worst when it came to my sleep. Would lay in bed for hours tossing and turning and end up waking up like 3-4 hours later. The good thing is that you will get your energy back up. This is my 2nd course of steroids and it does work like a miracle. You will feel as normal as we can ever be with this disease when on steroids and hopefully will get you into a long remission. Just restrict your salt intake so you don't get bloated. At around week 4 of steroids I ended up needing to urinate a lot more than usual and was thirsty all the time and it turned out its just 1 of the side effects but it just lasted a week or 2. Moon face definitely happened with me and weight gain but i was told it will all go back to normal once I'm done with the pills (hopefully).

Don't think too much about the side effects because you'll just end up paranoid.