New to forum-flare ups

F, 66, new to forum. Please accept my apologies that this is so long.

I was diagnosed with sigmoid u.c. Oct. 2018 after a normal colonoscopy in March 2018. From Dec. 2018 through Aug. had 4 1-2 day bouts of bloody diarrhea with increased mucous for a week then was OK. Slammed with severe diarrhea starting first of Sept. 2018. Have tried mesalamine oral, and 2x a day enemas which helped some and could return to work after 4 weeks (developed allergy in Jan. 2019)

Budesonide tried in Feb 19 but it was not effective. Worsened.

Prednisone 40 mg taper in Oct ‘18 and again March ‘19. Huge flare Feb/March 19-unsuccessful colonoscopy due to friable colon-CT scan showed pancolitis. 4 weeks of Vancomycin as GI suspected C.diff even though tests were negative. Remicade started end of March ‘19 seemed to help but not in full remission.

One day tick bite June 14, went to urgent care-was given one dose of oral doxycycline. Flare started July1st. Back on vancomycin, medrol dosepak (helped at 20 mg but less so after that), steroid enema’s at night started 3 days ago-maybe helping a little. Remicade levels were adequate when I had my scheduled dose on July 9th but does not seem to be helping. Anyone else have a flare when Remicade level was adequate-am wondering if it is doing anything or if I even need it.

Still having crampy sediment-semi formed stools with sigmoid heaviness feeling about 7-10 times a day. I think I need Prednisone again starting at 20 mg with a taper. Doctor is hesitant.

I have tried low FODMAP, SCD and elimination diets but really don’t know what to stick with as I just seem to get worse and certainly not achieve full remission with diet. Seems weird to me that this developed so late in life and I don’t know if the rest of my life is going to be this-does anyone else feel this way?

I am going to a functional med. MD next week and anticipate he will do a GI mapping stool test. Has anyone had that test and was it helpful? What about herbal remedies?

I use Megaspore probiotics, turmeric with slight pepper, Vit D. COQ 10, PURE one multi and fish oil.

Thanks in advance for your time and responses.

Thanks for your reply iPoop. I stopped mesalamine in Jan19 due to allergic reaction of rash and hives and was only on Remicade from early May to July 19, 2019 when I started the Medrol dosepack. What other combo does well with Remicade?

Thanks for the warning about FM. I want the GI map test as I can’t shake the feeling that there is an underlying infection, parasite etc. that I may have.

The whole diet issue has me going in circles also, scd or autoimmune paleo, gaps etc. I went from 150lb to 118 in 6 months. But steady now around 120 lb. the whole food sensitives and testing via LEAP left me with little to eat and much of that was wrong for u.c. The dietician I was working with last fall was expensive and not well informed about u.c. Live and learn, eh?

I appreciate this forum-what a breath of fresh air! Thank you!

Often remicade is tried in combination therapy with thiopurines (azathiopriune/imuran or 6-mercaptopurine/6MP)

Hi Hope

Just mainly wanted to sympathize as I too developed UC later in life when I was 64. I’d had many bouts of diverticulitis before that but UC was out of the blue. After a period of prolonged stress caring for my mom with Alzheimer’s.

I also tried all the diets with little success. Not to say they don’t work for some people. There’s a dr who greatly helped her MS symptoms by following a strict diet along the scd/whole 30 lines. Can’t remember her name off the top of my head tho.

The end result for me was that nothing helped my symptoms much except for prednisone until I went on entyvio. I wasn’t able to try the thiopurine class of drugs as I was tested and found to be a nonmetabolizer.

I hope you have a Medicare Supplement Insurance? Entyvio, for example, is really expensive but covered fully by Medicare plus my supplemental, since it’s administered by the hospital.

I am fully in remission now. I did not try remicade as my GI at the time thought I would do better on entyvio and Medicare did not require me to try and fail a cheaper med first.

I hope you find success! I would advise you to treat as aggressively as you can. I too wanted to find a root cause or a way to control my disease with more natural methods. Tried a lot of supplements without improvement. I guess I don’t mean not to try everything you can because peace of mind in knowing you gave it your best try is huge, but also don’t let symptoms progress and worsen. Sounds like you’re maintaining at the moment. It’s a tough disease! Wish I had more practical advice!

Ipoop knows more about the drug classes than I do but I think there are other drugs in the mesalamine class if you are allergic to mesalamine?

Hoping you find your “cure”!!!

Re: my supplemental is with blue shield of CA. However it’s medicare that makes the ruling on coverage and the supplemental has to cover it if Medicare does. It’s my understanding that as long as the infusion is done by a hospital the med is covered under Medicare and not the prescription side. Dr office infusions would be a different story. Are your infusions at a hospital? Mine are actually at the hospitals chronic disease center which technically is not the hospital but so far Medicare doesn’t care. (I live in fear they’ll change this because I definitely couldn’t afford entyvio copays). Remicade should be covered if it’s administered in a hospital facility.

I have Medicare supplement plan F which pays the 20% that Medicare doesn’t cover.