Debilitating Urgency

I have benefited greatly from this forum during my year long journey with UC. I was diagnosed with Severe Pancolitis Oct 2016. I was very ill and spent about 10 months as a zombie at work during the day while crashing on the couch at home. I also needed a blood transfusion in Dec 2016 as my Hemoglobin number were in the tank.

I had heard many terrible stories about the various drugs used to treat this disease. I had weaned off all drugs (80mg predisone, Lialda) by January 2017. I then tried to treat the condition with a product called Digestinol. A few people I knew had success with their UC. It seemed to help some, but not enough.

I started working with a Functional Medicine Doctor in July 2017. Through extensive diagnostic tests, we saw a much clearer picture as to the state of my disease. I started on a plan very similar to the Briggs Protocol. We used drugs to bring inflammation down, and many supplements and probiotics to heal the gut lining. This protocol has been a lifesaver. My energy is though the roof. I feel very healthy again.

My large nagging issue through this whole ordeal has been a constant urge to go to the restroom. I am running at least every hour or 2. All chronic abdominal pain has subsided as of September 2017. I experience cramping right before and during a BM. I can't control the urge when its time to go. And it wakes me up every 2 hours during the night. It is a constant issue that causes much anxiety and affects my daily life greatly.

My doc has recently prescribed Colocort to see if we can knock any rectal inflammation out. He also suggests we could be dealing with a possible stricture.

I would like to know if anybody here has experience with a nagging rectal inflammation that causes you not to hold on to your stool? Did the steroid enemas help bring it down? If this works for me, it will change my world.

Thanks in advance.

Thanks for the feedback. I am currently on Canasa suppositories. I can usually retain them for about 2 hours. I wasn't sure if this was long enough.

Debilitating Urgency = severe rectal inflammation that's still lingering from your UC. You are under-treating your UC and suffering as a consequence thereof.

Hit it hard with rectal-medications. Your choice of anti-inflammatories: Canasa Suppository, Rowasa/Salofalk/Pentasa enema.

Message received! I have been slowly coming to the conclusion that it's not ok to live with this as I do. I am hopeful to what the new recital meds will do for me. I will keep you posted.
You are all so much appreciated. It's nice to speak to people who know what I'm going through.

I would love to try the foam enema. However, we are running into an issue with insurance. My doc originally prescribed cortifoam. We found out it is not on my formulary. I would have to pay full price ($400). So we are trying the Colocort first. Enemas have been tough for me because I usually have to use the bathroom 1 to 2 hours later. And sometime as soon as I stand up from administering the enema. That's why we were going to go with the foam.

I now know what it's like to deal with health insurance with a chronic illness. It's been very frustrating.

While I was afraid of any drugs at first, I am so ready to do whatever it takes to get rid of this urgency. It's been controlling me long enough.

Quincy,
Thanks for the encouragement. I will do my best to implement your suggestions. I will keep everyone posted. Man! I should have been on this forum months ago!!!!!!😊

Notsosicklygirl,
The stricturewas just an idea that was thrown around. He is referring me to a new GI doc. Obviously there is much I have to work through. We are going to need to work in conjunction with a GI to get through this. My first experience with my first GI was not a very good one. I wish I knew then what I know now. I probably would have hit the drug therapy pretty agressivley while trying to change my lifestyle to give me every possible chance to keep things under control. I was very sick in the beginning and totally afraid of drug side affects. I now know letting this go has allowed an extreme amount of inflammation to linger, which is a total pain to live with.

I am sure i will get another colonoscopy. We shall see what we see. I am very hopeful. The new GI is highly recommended and seems to attack IBD traditionally as well as from a functional medicine perspective (diet and lifestyle).

Thanks, Flowersgal. I will look I to that. I received my Lialda that way when I did not have health insurance. The manufacturer has a similar program. I was so grateful because it was going to cost me $2000 a month. Shire Cares gave me 3 months for free. I'll check out the foam!!!

I remember when I couldn't sleep through the night. For some reason, that nocturnal urgency went away although I've never gone into remission. I too suffer from urgency. One thing I've been able to do to get around in the daytime is to go without eating. I find I don't have to use the restroom if I don't eat and if I do, it's usually not as urgent.

You may even look into some sort of intermittent fasting schedule, such as a 16 hour fast with an 8 hour eating window. This isn't as bad as it sounds. If you stopped eating at 8PM, then you could skip breakfast and start eating at noon. So it would look like 12 PM - 8PM: eat, 8PM - 12PM: fast. It's not for everyone, but I thought it might help with your urgency. You could play around with it and opt for a smaller eating window too. Some people fit all their calories in a four hour window. If you consider this, you do need to pay attention to your caloric intake--definitely want to make sure you're getting adequate calories during your eating window.

Troubled Turds,
I am currently on Wellbutrin. This acts to supress TNF-alpha, which is what remicade acts on without some of the side effects. I hope to stay away from biologics if I can. Although I know many here have found success with them.

Insurance finally came through and I started Colocort enemas yesterday. I was able to retain for about 2 hours. I am holding out hope this will help with the urgency. I have blood in toilet for the first time in months (that I could notice). I'm hoping this will subside as I continue use. Does anybody have any comment as to why the steroid would act in this way even though it's supposed to stop the bleeding? If anyone has experience with this, I would love to hear your story.

Steroid enemas also induced bleeding for me. I was in the hospital and newly diagnosed. Blood and frequency were decreasing somewhat and then they started me on steroid enemas and after 2 days the bleeding started up again. At that point I'd had enough of that hospital and their pathetic GI doctors ( had been there 9 days with 4 different drs and no diagnosis and no scopes so I checked out and went to another hospital. I don't know why the bleeding started again. Maybe it just happened to coincide with them putting me back on food after liquid diet.