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Frustrated beyond belief, running out of patience

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Ulcerative Colitis
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Posted 4/15/2017 7:15 AM (GMT 0)
from abscess/fistula surgery/flare setback again

I just got back from traveling cross country to see family, 3 weeks after the surgery and 2 weeks after the flare

Everything was normal before I left and got bad pretty much immediately

The biggest issue, I think, is how I can't empty my bowels or have BMs at all unless I am able to do it at home or wherever my "base" is at a given time

Now I'm seeing blood and feeling constipated with loose BMs more than I was prior to the trip. The frequency has been consistent but the formation has not been. I'm hopeful things go back to normal after a day or two back on the west coast.

I don't know what this thread is for. I need to vent, it's been about 6 weeks since this started and it hasn't gone away entirely yet. I'm so fed up.

I'm getting an MRI on Monday. Maybe I'll start taking the prednisone I was initially prescribed after that. I can't deal with much more of this.
Posted 4/15/2017 7:43 AM (GMT 0)
This disease is so horrible because of how little is understood about it medically , that's what's the most frustrating – knowing that it will never go away and that science hasn't caught up to be able to make a living with it bearable when flares happen

We're all fighters but we didn't ask for this and I know I wouldn't seek this many rematches
Posted 4/15/2017 9:36 AM (GMT 0)
We all need a vood vent at times! I can't agree more on how frustrating it is to have hope and signs that you're on the path to a full recovery then *wham* UC has other plans. I do believe you're right that we are in the dark ages of medical knowledge about UC, minus the leeches for blood letting. No known cause or cure, and most treatments are on the 60 percent or less effective range.
Posted 4/15/2017 12:00 PM (GMT 0)
I could write a book moaning about how Crohn's has affected my life. Incidentally, I don't wish to worry you, but abscesses/fistulas make me instantly think of Crohn's instead of UC. There are many people on the Crohn's board who would sympathise with you about the misery of abscesses/fistulas (weirdly enough, they are something I have never had, despite 17 years of otherwise rather severe Crohn's).

It's the chronic nature of it all which gets me down. And the fun extra-intestinal complications that you never even knew was a thing when you got diagnosed. This year alone I've had 3 bouts of uveitis - I'm still dealing with the third one - and shingles. Plus the Crohn's itself. The uveitis is almost certainly directly connected to the Crohn's, while the shingles was probably a result of being in an immunesuppressed state. Truly the fun never ends - or should that be begins?
Posted 4/15/2017 1:50 PM (GMT 0)
The MRI is to determine whether its CD or still UC

I've been tested before and it's come back as UC, so I don't see how that would change but time will tell

Meanwhile I just want whatever this is to go into remission and let me live my life again. I'm worried I'm agitating the surgical scar with my irregular BMs.
Posted 4/15/2017 4:24 PM (GMT 0)
Vent away! Are you using the enemas at this point?

q
Posted 4/15/2017 7:43 PM (GMT 0)
Might be time to try the steroids. Pred at least let's me live a somewhat normal life for a few weeks. That's well worth it in my book
Posted 4/16/2017 12:21 AM (GMT 0)
I've been back on the rowasa for 3 weeks, quincy. Everything had normalized and seemed to be fine before I flew east. I saw the surgeon and she told me it looked like I was healing normally and could return to regular activities finally.

Then I took the flight, which was delayed by 3 hours - so I sat in a cramped space without a BM for about 12 hours. When I finally did sit down, I felt constipated and passed very little. The next day was messy and my gut felt sore. Then blood.

After flying yesterday (no delays, thankfully) I had a similar experience. Got home after not having a BM for ~8 hours and had extreme urgency followed by leaky blood and a feeling of needing to empty more than was coming out. I ate dinner and had another normally formed BM with blood. Then this morning I had 4 BMs, all with blood on the toilet paper at the very least.

I also am having rental discomfort that makes me concerned another fistula has formed, as of yesterday.

I just don't know what to do. I'll go on the prednisone after my MRI on Monday, assuming the doctor concurs.
Posted 4/16/2017 1:13 AM (GMT 0)
Then have surgery.My original flare in 1985 had me in hospital 28 days and i lost close to 50 lbs .I would never let it get to the point it did back then.My quality of life is most important to me,i am a contractor in New York.I run my life ,this disease will not run my life EVER.My UC is progressing.i'vE had it a long time and its not going to get better then it is.I don't want to lower my immunity by going on Humira or Remi so surgery is best option.I want to get rid of this diseased body part that tries to interrupt my functioning on occasion-GOOD LUCK TO YOU
Posted 4/16/2017 9:54 PM (GMT 0)
I will do whatever I have to. Good on you for that attitude, 3timechamp.

My real concern here is about the recurrence of a fistula. I've had flares go away before, but this is something new that I just got over about 1 month ago.
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