Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

710 Members
7,267 Posts
0 Online
Gastrointestinal System
/ Crohn's Disease & Ulcerative Colitis Support Group

Horrible UC Flare right now

strongbeliever
strongbeliever
Glad to have found this forum. I have had UC since 1998. I am 56 years old and otherwise in very good health. It is my only real health issue. It has been in remission most of the time and I get flares every 5 years or so easily controlled with medication increase (Delzicol) and/or prednisone and Canasa suppositories. I had a very bad flare in mid-November - came out of the blue. I was on vac in New York City. They called in a script for prednisone. Started with 40 mg for a week and then tapered off. It helped control it and at the end of the taper I was probably 90% better. Still having looser stools than usual once a day but I could live with that. Since Christmas Eve, I started flaring again and the last few days have been the worst in terms of a flare up in my life. I have had accident after accident, extreme urgency and incontinence and have even gone while sleeping once. I am at my wits end and could not get into see my doctor until Jan 13. I'm going to call again Monday, but I needed to reach out to see what suggestions/thoughts anyone here had. My questions are:
1) Could this be something other than UC? Everything i eat unless extremely bland goes right through me. Stomach rumbles like a volcano and then it's like lava coming out uncontrollably. Sorry to be so graphic but I'm sure it isn't totally foreign to people on this site. I wondered if I had an allergy, some type of infection?
2) Canasa and Delzicol are not touching this. Are there better meds to take? What about steroid suppositories.
3) Should I be eating more fiber or taking fiber supplements to bulk up the stool?
4) what foods should I absolutely stay away from?
I am looking for some relief before I can talk to the doctor. If anyone has had a flare like this, please tell me what you did for it and what helped you. I feel very alone and scared. Hard to discuss with others. It's embarrassing and disabling at the same time. I am wondering how I will make it to work after being off for almost 2 weeks for holiday time, which wasn't so good with this going on. Thanks for your time - I appreciate it.
rmb
rmb
I'm sorry your suffering. It's likely just your UC flaring, not anything else. For me, my last flare was much worse than the previous flare before it. If you call your doc to try to get in sooner, try talking to a nurse rather than a receptionist. Sometimes they can work you in sooner or get the doc to speak with you.

As far as diet, it's hard to say what is a problem food. If it were me, for now I'd stick with low fiber or bland for now, until the disease is better controlled. It'll be easier on your colon. You can try the BRAT diet (bananas, rice, apple sauce, toast) or a low residue diet (Google low residue diet). These diets aren't intended for long term.

There are different treatments other than what your taking so it may just be a matter of switching up your treatment.

Most of us have been in your shoes. Carry extra underpants and wipes with you. I did that for accidents. I used Imodium too, just to get through situations where I needed to keep it together at work, although that didn't always work and I'd have an accident. Don't over do it on the Imodium though because sometimes that can cause other issues. If you call your doc's office, they can advise you on that.

Hang in there!
rmb
rmb
Also I see from your profile you have pancreatitis. Maybe that is part of the issue. I mean a flare up of either can cause diarrhea but what you describe sounds classic for a UC flare. But your GI should be able to sort it out.
deleted_user
deleted_user
Your immune system could've revved up in response to pancreatitis, or it could be responding to a viral infection. Either could cause a nasty UC flare. I once went through hell when I contracted a nasty strain of norovirus on top of a UC flare.
Levi219
Levi219
Only thing I can suggest is to eat bland, low fiber foods. If you are losing lots of water with your bowel movements, be sure to drink lots of fluids. (Avoid coffee altogether) If you get too dehydrated go to the ER.
strongbeliever
strongbeliever
Thanks to everyone who responded - especially rmb - it's very helpful and supportive to know there are others who have dealt with this. I am working from home today and am really trying to watch my diet. My GI called in a script of prednisone until I can get in to see her. Any thoughts on how it works for anyone? It seemed to work better the first couple times I was on it some years ago. The last time, it helped calm things down but did not completely resolve the situation.
rmb
rmb
Yeah, I think it's just supposed to be used to address the immediate situation and get the inflammation a bit under control. It doesn't necessarily keep things under control long term, and shouldn't be used long term anyway. I think like a lot of drugs for UC, it just depends on the severity of the inflammation and how your body responds to it. My experience with UC and I think for others as well, is that you can go a long time where the maintenance drugs work for years and then all of a sudden,the don't cut it any more so you just have to move on to the next treatment. Some people find that really changing their diet helps keep their UC controlled. That's not been my experience, but I know many people who find dietary changes can help. But for sure when you're flaring, I would say watch what bothers you and keep it simple.

I'm really glad you got a hold of your doctor. I know for me, sometimes if I can just talk to someone at the office other than a receptionist, it helps me get a game plan together in the short term. It's nice when you can work from home. I've done it occasionally too when I've been too weak to come in. Fortunately I've been on a good run with my UC being controlled but I'll never forget having accidents at work or just barely being able to stay awake during a meeting or at my desk. Ugh... it's not fun, at all. We know what you're going through, trust me. I work with a woman who has Crohn's Disease and we share old war stories all the time. It's weird, but kind of cool to have someone you can relate to.
strongbeliever
strongbeliever
I am so grateful to have the support here. No one really understands unless you've been there. I will keep taking the prednisone for some control and will be seeing GI next week. I want to have stool tested though b/c this time around it is unusually foul smelling. I wonder if there could also be an infection involved. I wish everyone here the best of health for 2015!
rcaschbacher
rcaschbacher
I am so sorry to hear that you are having a hard time right now! It sounds like a bad flare to me. Perhaps something with your pancreatitis, but I don't really know and only your Dr can really decide that for sure. I am glad that your Dr has prescribed more prednisone. The prednisone may not 'cure' this flare, but it will hopefully give you some relief until you can see your Dr. As for the medications you are taking and if there are better meds for you to take that is a good question to ask your Dr. Sometimes our bodies change and a change of medication is required. It might be that you need some different meds to get this flare under control. As for comfort and making it until you see your Dr I would limit your fiber and go on a low residue diet. Also stick to bland foods since you mentioned that things seemed to be a bit better when you did eat bland foods. Avoid caffeine, dairy, and alcohol also. Those were the recommendations when I was first very ill and what I still tend to avoid. Avoid raw veggies, the skins of fruits and veggies, avoid red meat as it is harder to digest right now...easy foods are going to be best when you are flared.

Also, with the accidents. Consider wearing an adult diaper during the day or at night. It can provide a sense of security. Or, try taking some imodium, but be careful as the Drs tend to not want us to take to much of that. still, we have to live! Have changes of clothes and wet wipes with you if you are out that way you can clean up and change if you have an accident. Have a plastic bag for the dirty clothes. These are things you sort of learn and having these things just provide your mind with a sense of comfort. Having that 'comfort' in your mind relieves some stress and the relief of the stress can help prevent some accidents. Most of all is to try not to be upset by the accidents. This is something you can't control and we have all had some experience with it. :)

I hope you start to feel better soon and that the Dr is able to help you lots on the 13th!

Rachel
strongbeliever
strongbeliever
Rachel, thank you so much for your support and kind words. I am doing better by sticking to the low residue/low fiber diet. I think the combination of a flare and then the holidays really got me. I am just hopeful that with a change of medications, it will continue to keep things under control along with this course of prednisone. Since I couldn't even leave the house for 4 days, my daughter went out and got me Depends. At first I felt terrible having to wear them, but it gave me so much security I wished I had done it sooner. I am at work today and have them on and feel so much more relaxed. I do carry extra clothes, wipes, all that. I can't tell you how much it means to have others here understand and support each other. I wish everyone good health in 2016. We will get through these flares!
gustokitty
gustokitty
Hi. I agree w the recomendation to avoid high fiber foods. Most of my flares have been what u describe.
But sometimes it can be an infection or a virus too. The foods I do best avoiding, especially during a flare are dairy, gluten, processed sugar.

If your gi doctor is good, he will run blood test checking other things, and not just assume it's the UC. Prednisone always gets my flares under control, (at a high psychological cost), even if temporarily. So for myself, if the prednisone doesn't get it initially under control, it has usually been because it has been the rotovirus, or c-diff.
As far as firming up stools on a normal UC flare, Colostroplex by Health Concerns has worked very well for me. If u find out u hv bacterial infection and tk antibiotics, it's good to take probiotics after...or even to try them anyway. Good luck.
bart4u
bart4u
I have been on Humira since 2008 and it has worked for me. That is 7 years without having to take large amounts of Prednisone. Ask your doctor if Humira is right for you. For me when I was at a point Prednisone stopped working was when I had too much scarring and I needed another resection. After my last resection in 2008 my doctor told me my body has had too much Prednisone and that he wanted me to control my Crohns with Humira. He also said I was at a point where I could not afford to have another resection. I have had too much of my small intestines removed.
Ford2
Ford2
I am in a serious flare right now too. I have been on prednisone since September. It was almost impossible for me to get in to see a G.I. Doctor until I told my G.P. Doctor I would not be around by January when my appointments were for two different G.I. Doctors. He was able to get me in November.. I suggested to the G.I. Doctor that I try Humira. It was the best thing I ever did. I was going at least 12 times a day I am now down to 4 times a day. I am gradually weaning off prednisone too. I started at 40 mg and now am on 5 mg.. I had tried all of the things you did with my regular Doctor , but nothing worked. This is only the second flare I have had since 2011. I hope this doesn't mean each time will be worse than the time before.. Diet is very important like everyone has told you. Whenever I eat foods I shouldn't I pay the next day.. Good luck and don't give up . Things will get better.
mommason64
mommason64
OMG I am having some serious trouble right now. Looks
Ike I will be heading back to the dr. This week for some prednisone to stop this nightmare. I hurt so bad and I am so dehydrated from the past couple of days. Does anyone have any good ideas to slow this down until. Monday? I have been taking anti-diarrheals but it not even touching it so far.
strongbeliever
strongbeliever
Ford2- so glad to hear you are doing better. I am still on Prednisone and it's calming things down, but I am concerned that once I am off, I will flare again like I did a couple of months ago. I will ask my GI about Humira or other treatments as well. It's so good to have this forum to share information and empathize with each other. There is so much needed support that the common person would never understand. I hope you continue to have success with Humira
Posts You May Be Interested In
  • GreenEyes727

    Caricatures

    Posted by: GreenEyes727
    Last Reply: Tired
    6
    Look at what my best friend did with my picture!
  • GreenEyes727

    Truths

    Posted by: GreenEyes727
    Last Reply: GreenEyes727
    14
    We all have 24 hours in a day.  How we spend these hours is important.  Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do.  Gonna have to work on that.Your turn.  Tell me another truth.