Need help

Diseases & Conditions Ulcerative Colitis
1
My son has had UC for 11 years and is almost 26. He's been in a terrible flare- NOTHING is working. Humira, entyvio and all sorts of pills. Doc is wanting an assessment from a surgeon. Thinking of going to Cleveland clinic to see if there are any new treatments available. Anyone have info to help at all? I've never seen my son sob before today when he told us. He has a wife and 3 month old and he's tired of the whole thing. His only symptoms are urgency and frequency 8-10 times per day. Was tested for c diff and was negative. His inflammation markers are thru the roof and is going on 40 mg of prednisone for at least 25 days. Please- if any of you has specific knowledge about Cleveland clinic and their docs or any treatment please respond to this thread. Thank you in advance! This mom's heart is hurting so much!
2
There are several biologics in phase-III trial right now, but none really different form Remicade and Humira. There is a JAK-inhibitor but it is at least a year away,

Before surgery, it might be worth trying several FMT treatments if a good donor can be found. It does help some. It is a kind of probiotic treatment, but nobody is fully sure what is going on. If there is undetected c-diff, it is really good for that.

good luck
3
If he's already failed two biologics than the odds are against a different biologic working for him as there's some of for whom no medications will work and surgery would be the best choice. We do have some posters who've undergone the surgery and are doing well and wish they'd done it sooner.

If he still has some fight in him, then other biologics available are stelara (off-label), or xenjaz (off-label) but they are not currently approved for the treatment of UC which makes insurance approval a little harder. We've had some success stories with each, so it is possible they might help.

Fecal Microbiota Transplant (FMT) shows some promise and is undergoing clinical trials in a lot of places now.
Moderator Ulcerative Colitis
John, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g Lialda, and 2X rowasa
I'm only speeding because I have to poop really, really badly!

Post Edited (iPoop) : 7/5/2017 4:47:24 PM (GMT-6)

4
Sorry to hear about your son... Could very well relate to your concern. Been in the same shoes with my daughter's UC .

As others suggested, consider FMT a try before surgery. His baby's poop could be a good match . Read and gather as much info about fecal microbiota transplant here in the search box in this forum and also in Google .

There is a site called power of poop which is active with success stories of FMT for C.diff /UC and other related studies of FMT .

Consider anti inflammatory diet a try if workable .

Best wishes
Daughter 22 yrs- UC Pan colitis.-In Remission achieved by 5 home fecal transplant in 2011.
Diagnosed in May 2011
SCD diet (2011-2013)
Occasional sugar , milk and outside foods(2013- 2014)
Normal diet - 2015
Current meds- Lialda- 2 tabs a day.
5 Home fecal transplants for C.diff in dec 2011.
5
Thanks all for reaching out! Does anyone know of the benefits of medical marijuana? He tested negative for c diff but he was really hoping to test positive! Anything that is treatable! Also if anyone has any info on all the different pouches that are available-there are many when I looked at the Cleveland clinic website. So much information! Thanks again!
6
I'd definitely get an opinion from a surgeon and take all the steps necessary to find out whether he's a j-pouch candidate. If you are close to CC, that's fantastic. Even if he doesn't end up having surgery, being armed with the info is a good thing - and being ready to move when/if the time comes is smart. A lot of the meds do not last forever, sometimes it's a matter of surgery now, or surgery later. I wouldn't fear surgery, I had it and I am so thankful to be off the drugs, and done with all the doctors, and the future full or unpredictability. Surgery comes with it's own challenges, but for me, life after surgery is much easier than life with UC. I tried all the OTC stuff. Didn't bother with trials because I didn't want to wait around, potentially spending 6 months for a 1 or 2 year remission (maybe more but my history typically wasn't). I didn't try fecal transplant and I would have - but I am happy I had surgery. I wanted to be done with UC.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
7
Medical marijuana has helped some with some of their symptoms (much like all things UC, it is hit-or-miss).

Here's some info from our resources section on j-pouches:

Surgery is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure - There are also some good blogs out there that really helped get a handle on what the process is like -
Moderator Ulcerative Colitis
John, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g Lialda, and 2X rowasa
I'm only speeding because I have to poop really, really badly!
8
Why not try FMT? at this point he has nothing to lose, and if that doesn't work than it sounds like he needs to definitely look at surgery.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Currently, reducing Pred from 60g, Have had first Remicade infusion, waiting for the second.