Running Out of Options...

So after I started to get my hopes up about tolerating the Remicade so well, I went in for my fourth infusion on Monday and had a reaction this time (pretty bad tightness in the chest/difficulty breathing along with an intense, painful itching inside my right foot). They stopped the infusion and called my doctor who told them to dose me with 125mgs of hydrocortizone and continue the drip at a slower rate. The breathing and foot returned to normal, but after they started the drip again I still had some very mild itching in my feet. The next morning: severe all-over joint pain (could barely move my right hand), fatigue, splitting headache, swollen fingers, loss of appetite. Still experiencing all this but drugs are helping ease the pain right now.

Saw my GI this morning, and she doesn't want to risk another dose, given my reaction to this one. She ordered labs for the antibody test, but the results won't be back for over a week. According to her the only options left are Humira (which is only about 40% effective with UC according to studies) and surgery. She's sending me with an urgent referral to a couple experts at University of California, San Francisco for a second opinion, hoping they might see or know of something she doesn't.

I've been looking more into LDN lately and so asked her about it. She'd never heard of it and so was hesitant to prescribe something she doesn't know anything about, but she told me I should bring it up with the experts at UCSF. I'd like to try LDN next, before I go for Humira or surgery, and am interested to hear what the "experts" think of it.

Also considering Welbutrin (immediate release). Have read some posts here about it and found out it works as a mild TNF inhibitor (similar to Remicade and Imuran) and am willing to try anything at this point. Have been on it before for depression (though it was SR last time, which doesn't do anything for UC) and wouldn't mind going on it again.

At this point the good news is that since I just got my Remi infusion and it seems to do really well at controlling my symptoms, I have a couple months to figure all this out before the Remi wears off and symptoms return. I also am on summer break right now so am not having to take time off work for any of it. My GI understands this and wants to get things taken care of before I start teaching again in a month.

Seeing as how my symptoms have been relatively mild for the last year or so, it seems a bit wacky to even be discussing surgery at this point, but apparently that's where we're at right now.

I don't think there's anything else out there that I haven't either tried or read about, so I guess I don't have any questions here that need to be answered... Just venting I suppose. But if anyone does have any insight or advice, I'm all ears!

HAVE TRIED:
Oral mesalamine various types (currently on Asacol HD)
Mesalamine enemas (currently taking nightly)
Remicade (intolerant)
Imuran (intolerant)
Prednisone (dependent)
Cortifoam
Canasa
SCD
FODMAPS
Various other dietary changes
Probiotics - various types
Licorice (intolerant)
Vitamin D
L-Glutamine
Omega - 3 & 6
Medical Cannabis
Umm.... the kitchen sink?

as long as the symptoms are mild, I would hold off on surgery and wait for new therapies - or try to get into trial for one of the new drugs.

Having the abstract or whole paper on the two studies at U Penn that showed LDN promoted mucosal healing in Crohn's patients would be the proper way to start a discussion with doctors. They may quibble about applying it to UC, but they will at least know it is something that has received peer-reviewed study for IBD.

Looks like you've been through the wringer and have tried many of the things I've found helpful. One thing I don't see listed: have you investigated a possible link to candida overgrowth (basically one facet of a possible gut ecological imbalance). Taking a good quality probiotic and dietary modifications can address it, but some UC patients are able to go into remission with the use of natural or prescription antifungals.

If you haven't read them already, I'd highly recommend the books Listen to Your Gut and Optimal Digestion as great resources for exploring ALL avenues for treating and managing UC. Hope this helps.

bootstrap, what are your current symptoms?

yeah LDN seems worth a shot

and even humira may be worth trying, you never know.

I would recommend a consult with a CR surgeon. Since you are almost out of options it would be a good precaution to learn more about surgical options in the event you have to make that decision. Dr. Varma at UCSF is highly respected. Having a consultation does not mean that you are ready or willing to have surgery now, just collecting information. I did this and by the time I had to make the decision, I felt better informed and better prepared.

Sue

@Sue - thanks for the recommendation. I will definitely consider that. I just looked up the GI docs and surgeons at UCSF and didn't see a Dr. Varma there, though maybe the website just isn't up to date. I forget the name of the specialist my regular GI is sending me to at UCSF (could be the same one), but I will let you all know how it goes after the appointment with them.

That is probably who she's sending me to, then, because she said it was a husband/wife team, LOL. Ah, he is under gastroenterology, and she is listed under colorectal surgery instead of gastrointestinal surgery. Great - nice to have an idea of who I'm seeing beforehand. Maybe I can email them my ideas on LDN/Wellbutrin so they can read up before the appointment. Thanks, Sue.

Have you tried progesterone? I know this is a bit controversial but if you are like me and your flares are much worse around your period then it may be something to consider.
Also have you tried kefir/ kefir grain enemas? There is this guy Dominic who has a website all about kefir and he sells it. He says he cured his own uc using kefir grain enemas.