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View Full Version : Horrible UC Flare right now


mpettina
01-02-2016, 08:59 PM
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.

spatters
01-03-2016, 01:19 AM
For me my UC is food related. Following the FODMAP diet may help. There are some foods that are not on the FODMAP food list that give me problems (like corn, corn syrup is on the list but not corn, go figure). There are multiple lists and they do not agree. You may have to eliminate a large number of items from your diet and slowly and methodically reintroduce them one by one. Oatmeal, rice, meat, sugar are usually a safe start. Be suspicious of all you eat and read labels for ingredients. Keep your meals simple. As far as medication liada is effective and targeted to the colon. It is expensive without insurance or a high deductible plan. Also consider a medical grade probiotic like VSL #3. For years my PA's and Gastro's told me it wasn't food related but they are slowing coming around. When you look at the FODMAP food list some of those items may standout to you and eliminating them from your diet may offer some relief but it can take a while to get it under control. Hang in there.

mpettina
01-04-2016, 10:16 AM
For me my UC is food related. Following the FODMAP diet may help. There are some foods that are not on the FODMAP food list that give me problems (like corn, corn syrup is on the list but not corn, go figure). There are multiple lists and they do not agree. You may have to eliminate a large number of items from your diet and slowly and methodically reintroduce them one by one. Oatmeal, rice, meat, sugar are usually a safe start. Be suspicious of all you eat and read labels for ingredients. Keep your meals simple. As far as medication liada is effective and targeted to the colon. It is expensive without insurance or a high deductible plan. Also consider a medical grade probiotic like VSL #3. For years my PA's and Gastro's told me it wasn't food related but they are slowing coming around. When you look at the FODMAP food list some of those items may standout to you and eliminating them from your diet may offer some relief but it can take a while to get it under control. Hang in there.

Thanks for your reply. I will google FODMAP. I was also told to eat low residue diet. Maybe it's similar? I think each flare gets worse and more complicated as I get older, and I think you are correct in saying that food plays a bigger part than previously thought. Thanks for the support!

lild4
01-05-2016, 06:09 AM
I too have UC and currently in a flare. I have been on imuran and Remicade for the past three years. That combination has worked until just recently. I refuse to take prednisone anymore as I don't like side effects.
You might want to consider Remicade.

mpettina
01-06-2016, 07:39 AM
Did the Remicade and Imuran cause you any side effects or problems? what is your next option?

lild4
01-06-2016, 09:23 AM
The remicade and imuran do have side effects. However nothing that I can't live with. Mostly fatigue, muscle and joint pain. I do have a comprised immune system as is what these drugs do. I've been on imuran for 6+ years and remicade 3years. The combination itself can potentially cause other issues but so far I have not experienced these.

Saw my Dr yesterday and I'm in wait and see mode

momzworkin
01-06-2016, 01:32 PM
My daughter is on Apriso and Remicade, and has some really bad skin issues crop up-like huge sores on her legs and a fungus on her toes. When you are on something like Remicade that messes with your immune system it causes you to be much more susceptible to fungus related conditions.
Good luck, and I hope you get some good answers. We are currently researching taking wheat out of her diet-I mean-when do you stop trying ANYTHING YOU CAN, right?