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Mild flare during COVID-19, unsure what to do

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Ulcerative Colitis
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Posted 5/8/2020 12:51 PM (GMT -5)
Hi everyone ! smile

I have had ulcerative colitis for almost 13 years. It started with left side colitis, then progressed to pancolitis. I took salofalk at the begining, that worked for about a year, then I was put on azathioprine, but that made me feel very sick (extreme fatigue, nausea). I was finally put on Remicade for two years. That worked well for the most part. I started SCD in 2013 and have been off Remicade since then. I took salofalk at times when I had minor flares, but in general I find that it does'nt do much for me. Right now I'm having a mild flare and diet does'nt seem to be helping. Maybe I should'nt be complaining, because my symptoms are not that severe, but I know it's not a good thing to stay inflammed for a long time. I go once or twice a day, mosly formed sools, sometimes a bit of blood. However, my main problem is that I have pain and nausea. I was on iron tablets and I think that did not help.

I'm not sure what to do. I feel unwell but at the same time I don't know if I want to go on immunosupressive drugs, since my symptoms are relatively mild and given the COVID situation. I used to have severe pancolitis with 20+ bowel movements every day. Anyways, i guess I just wanted to vent. Feeling a bit discouraged... Thanks for listening. smile Hope you guys are well.
Posted 5/8/2020 9:33 PM (GMT -5)
Hi...welcome to the forum.

You mentioned you were on Salofalk in the past....oral or rectal?

I suggest you call your GI asap and request both Salofalk oral and retention enemas at the very least to start. Your symptoms sound limited in the rectum based on your stool symptoms.
A bit of blood...as in with every bm, Between bms with only mucus, around stool and on tp?

Let us know how you're doing.

q
Posted 5/9/2020 5:33 AM (GMT -5)
Hello,

I'm actually having the same problem--the beginnings of a flare with some bloody stool. I'm currently on Remicade, but want to avoid them uping/changing my dose if it I can.

I contacted my doctor to ask for anything I can do to help stop the flare, and so far I have no response. What I do have is some advice he gave me soon after I was diagnosed, and it was to take water-soluble fiber (Benefiber powder or an off-brand). It helped me a lot back then while I was waiting for meds, and it has helped in the past when I had a bit of discomfort/pain/loose stool.

As I understand it, because it is water-soluble, it doesn't exacerbate the situation like regular fiber and it helps regulate bowel movements at the same time. It's flavor free, so I mix it in water or my breakfast cereal in the morning. I can usually notice a difference in a day or two, and it's been my habit to keep some on-hand even when I'm not flaring just in case.

If you decide to give it a try, my doctor recommended to ease into it. Take one "dose" the first day, up it to two if you don't notice a change, etc.

Hope that helps! If you have any tips for me, I'd love to hear them, too.
Posted 5/9/2020 8:39 AM (GMT -5)
Thank you for your replies

Quincy, I was on oral salofalk and rectal. I am still using the suppositories (1000mg), because I find that they are the most helpful. I have a valid prescription for both, so luckily I don't have to call my GI. I am just reluctant to take them (the tablets), because I feel like in the last few years, they were not helping much, although it was a miracle drug at the beginning of my uc. But I will definitely give them another try before moving on to the other drugs. My GI never mentioned the enemas, I will ask her about that. I usually have normal bowel movements wth no blood or with traces of blood, then I get a mushy stool with some blood mixed in it. I don't just pass blood or mucus. But the pain and discomfort can be intense.

Rose Teresa: Thank you, I will look into that smile I hope your GI calls you back soon. Mine never does or it takes forever. It's pretty annoying when you have a chronic illness. Hope you feel better soon. When I was on Remicade, I had the infusion every 8 weeks at first and it worked well. Then I stared to flare two weeks before my next infusion. So I started to have infusions every 6 weeks and that worked. Also, they did a colonoscopy and they found that the inflammation in between infusions was severe but limited to the rectum. So they gave me rectal meds. Maybe that could help you in between infusions? When is your next infusion?

Post Edited (Lili35) : 5/9/2020 9:48:21 AM (GMT-6)

Posted 5/9/2020 12:51 PM (GMT -5)
Not helping regrding oral....considering pancolitis is the most extent of flare you've had, I suggest you get on them as well as retention enemas at the very least for full mesalamine coverage.
Just sayin...since you stated you don't know what to do and didn't mention any reaction to them.

q
Posted 5/9/2020 2:24 PM (GMT -5)
Lili35,

My doc is also awful at responding. Maybe it's a universal with GI's lol. My next infusion is in 4 weeks. I'm fairly certain this flare was brought on by the stress of starting a new job. It's minor, just bad enough to be a problem.

That's a good thought. I'll check into rectal meds in case that can help the symptoms I get the week before the infusion. Thanks!

Hope you feel better!
Posted 5/9/2020 3:11 PM (GMT -5)
My doc is fast to reply, but i had to go through 4 different ones before I got a good one....

I agree with quincy, try oral and rectal mesalazine first, especially if it's helped you in the past.
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