HealingWell
Search Close Search
☰

Last resort ideas

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/19/2021 5:30 PM (GMT 0)
Hi All,

I have failed Entyvio, Stelara, Humira, and about to fail Xeljanz. That basically leaves me with Remicade and Zeposia.

I'm curious what you all think about "last resort" options and ideas before resorting to surgery. Here are some examples:

-SCD diet
-Going to Dr. Borody in Australia for Anti-MAP and/or FMT
-Trying to navigate the insurance hurdles for combination therapy (example: Entyvio/Stelara simultaneously)
-Figuring out a way to get access to drugs that are approved for other conditions but not UC yet (ie Rinvoq)
-Figuring out a way to get access to statins and add that to see if it'll help (https://med.stanford.edu/news/all-news/2021/09/statins-ulcerative-colitis.html)
-Go on some sort of health/meditation retreat
-Try something crazy like ayahuasca

What do you think about the above ideas? What other ideas might there be?

Thanks in advance for the input!
Posted 11/19/2021 6:02 PM (GMT 0)
Did you have any response to Humira at all? After Entyvio stopped working for me I switched to Humira but only had a slight response to the loading doses and then went backwards (I developed antibodies). Doc wanted me to go to Xeljanz but I asked to give Remicade a try first since Xeljanz was so new at that time he didn't even have any other patients on it. Had an almost immediate response to Remicade, but it took a long time and dose & frequency adjustments until I became completely symptom free. I hung in there with it longer than a lot of people might have, but I was so bad when I started it and because of it I was able to get my life back that I didn't want to give up on it until we exhausted all options with it. I have a scope coming up in a couple weeks and am hoping it is completely clear and that Remi continues to work well for me for years to come.

Humira & Remicade are both anti TNFs but are very different. So it you did respond to Humira at all, Remi might work for you and you have lots of options to make adjustments if you need to.

The thing about your last resort list is that some of them can take a long time to work if they work at all.

Wish you well with whatever you decide.
Posted 11/19/2021 8:38 PM (GMT 0)
Agree remicade worth a shot. All your ideas are possibilities. Depending where you are based you might be able to get an anti map opinion and prescription more locally. Try Crohn’s map vaccine website or human para website for possibilities.
Other suggestions. IBD-AID is a slightly gentler version of scd and there is a very supportive Facebook group plus recipe ideas on the website.
Qu biologics are developing a different approach for Crohn’s that might be worth keeping an eye on.
I have just started looking at the Briggs protocol (lots of ideas from a scientist who managed to get his own UC under control).
Good luck and hope something works for you.
Also how about a couple of things at once to maximise chances. You could do diet and drug together maybe.
Posted 11/19/2021 9:19 PM (GMT 0)
I am really happy that I had surgery, it didn’t turn out exactly as I hoped but my quality of life is so much better than before surgery. It was some of a relief to finally get surgery.

Have you had a second opinion with an IBD specialist at a teaching hospital?

I’ve used Cyclosporine in the past with an immunosuppressant. It worked very well for me the both times I had it.
Posted 11/20/2021 3:58 AM (GMT 0)
Keith like You I'm grateful I got my life back having surgery. Removing a diseased colon when it was causing my life to derail was best decision I ever made. No complications at all
Posted 11/20/2021 2:51 PM (GMT 0)
With surgery, I most worry about:

A) the high rates of pouchitis (seems like I'd still be dealing with IBD meds and symptoms due to that and
B) my understanding is that you're still stuck going to the bathroom 4-6 times per day
C) it takes multiple surgeries and you're left with a stoma for a while too

Which is why I'd like to maximize the number of options before resorting to surgery...
Posted 11/20/2021 3:45 PM (GMT 0)
I have chronic pouchitis, it’s nothing like living with UC. It is easily treatable and doesn’t affect my life. I couldn’t manage UC anymore.

After having your colon removed you feel so much better that the ostomy isn’t that bad. You are healing during that time.

Going to the bathroom is different than with a colon, it is much quicker. I usually go about 3 times a day.
Posted 11/20/2021 5:28 PM (GMT 0)

ks1905 said...

Going to the bathroom is different than with a colon, it is much quicker. I usually go about 3 times a day.


I typically go 3-4 x a day with a colon in remission!
Posted 11/20/2021 9:36 PM (GMT 0)
Do you take any probiotics? I started taking some (Culturelle) after being wiped out by an antibiotic in the spring and they make a major difference. I also eat Siggi's yogurt daily (as much for the protein as the probiotics.) I just read a study where they found pomegranate juice really helped, want to try that too. My doctor also recently prescribed a bile acid sequestrant (Colestipol) because I had my gall bladder removed and that made a big difference. Not sure how intact the rest of your digestive tract is but I thought I'd pass that along too.
Posted 11/20/2021 10:09 PM (GMT 0)
No pouchitis for me. Surgery 3 yrs ago
BMs depend on how much u eat. Me 2x day is average. I eat healthy
3 surgeries. Stoma for 7 months. Some days I forgot I had bag on. U get used to it. I thought bag would be end of world. It wasn't
Posted 11/22/2021 12:40 AM (GMT 0)
I did surgery in June, and the bag really isn't bad at all. It took some getting used to, but even with it, I am infinitely better off. I plan to do the next two steps for a pouch in the next 4-5 months, but I am confident that if that doesn't work out and there are complications, I can live with permanent bag and just have my rectum removed.
Posted 11/22/2021 4:27 AM (GMT 0)
I would visit a research hospital. They usually have trials going on and their doctors just seem more knowledgeable about treatment. If it should ever come to surgery....Make sure they double check you before surgery and know that it's UC... and that it's absolutely not Crohn's.

I would also start trying diets....keeping a food journal...and I would probably try Remicade with a secondary medication like methotrexate or 6 mp. (Have them check your insurance on the Remicade. This is one med you do not want to have sticker shock on, and they do offer an assistance program for Remicade. My doc helped me apply for it)

Finally...don't fret about surgery or a stoma. I felt much better after they removed parts of my diseased colon. My colostomy became permanent and that's ok with me. It's not that bad. I forget about it most of the time.

Clo
Posted 11/22/2021 11:31 AM (GMT 0)
Can I ask on this thread since so many who have surgery are commenting....did your surgery cure other complications of your UC too...such as joint,eye, fatigue and other issues?
Posted 11/22/2021 4:54 PM (GMT 0)
Depends how sick you are. I'd try Zeposia and Remicade first.
Posted 11/22/2021 5:05 PM (GMT 0)
In Europe they ve just approved filgotinib for UC. Generally the FDA and the EMA tend to approve the same drugs so maybe you ll get it in the US very soon? Also I have read ABIVAX is recruiting in the US for stage 3 and its stage 2 results were very promising.
Posted 11/22/2021 7:34 PM (GMT 0)

kyle_dn said...
Can I ask on this thread since so many who have surgery are commenting....did your surgery cure other complications of your UC too...such as joint,eye, fatigue and other issues?

I never really had other complications from UC. I was tired but that was probably more so from malnutrition.

So I have chronic pouchitis (crohns) so the surgery didn't "cure me" and I still take a biological which would probably help if I had other complications. Living with pouchitis is so much better for me than living with UC.
Posted 11/23/2021 8:00 AM (GMT 0)

passer said...
Hi All,

I have failed Entyvio, Stelara, Humira, and about to fail Xeljanz. That basically leaves me with Remicade and Zeposia.

I'm curious what you all think about "last resort" options and ideas before resorting to surgery. Here are some examples:

-SCD diet
-Going to Dr. Borody in Australia for Anti-MAP and/or FMT
-Trying to navigate the insurance hurdles for combination therapy (example: Entyvio/Stelara simultaneously)
-Figuring out a way to get access to drugs that are approved for other conditions but not UC yet (ie Rinvoq)
-Figuring out a way to get access to statins and add that to see if it'll help (https://med.stanford.edu/news/all-news/2021/09/statins-ulcerative-colitis.html)
-Go on some sort of health/meditation retreat
-Try something crazy like ayahuasca

What do you think about the above ideas? What other ideas might there be?

Thanks in advance for the input!


Why is no one doing FT in your country? We have many Drs in Australia doing it. I’m currently trying antibiotic therapy for my
ibd though Barody. If it doesn’t work it sets me up for FT
Posted 11/23/2021 11:37 AM (GMT 0)
Filgotinib, upadacitinib (rinvoq) and xeljanz (tofacitinib) are all from the same family so I wouldn't waste time switching among those (I think hugo18 tried that, without success)

How long have you been on xeljanz? It didn't start to really kick in for me until week 7, by which time my doctor had already sent me to a consultation with a surgeon to discuss having a colectomy.

My hospital (europe) is doing FMT trials but only in patients with mild/moderate disease and not the severe cases. Likewise dietary interventions and probiotics seem to help those most with milder forms of UC (and they can take a lot of energy to follow).

Remicade or zeposia are both worth a shot. Or indeed enroll yourself at a research hospital doing clinical trials and see if you can join the abivax trial (or any other uc trials).
Posted 11/23/2021 6:23 PM (GMT 0)
Yeah, how long have you been on xeljanz? Xeljanz took 9 weeks to put me into remission. I was about to give up on it.
✚ New Topic ✚ Reply