New member needs suggestions...

Hi - I'm a new member, needing advice. I've been reading the forum for months
and really appreciate your knowledge and support; the links to research,
scientific info, etc. are very interesting.

I'm 56F, was diagnosed by colonoscopy about a year ago with severe pancolitis
(passing bld/muc 20-30 times/day), was hospitalized following the scope for 3
days. I think the stress of the previous year may have been a cause. I tried
Canasa (burning, more bleeding) and Asacol (burning pain in chest, back; extreme
weakness, nausea, fever), and my GI concluded I'm allergic to mesalamine. I
spent over 2 months on Prednisone (40mg taper, bad withdrawal symptoms), then
was off all meds for a few weeks, then started Humira late Sept 2013.

The Humira worked fairly well, I got down to one BM per day, but could never get
rid of some blood on/in my stool, and occasionally I felt symptoms were
threatening to come back. My GI didn't take it seriously, dismissed it as
hemorrhoids and IBS, and spent my follow-up appointment insisting that I
schedule another scope for my first-year anniversary of diagnosis. By April I
had developed severe muscle pain which moved from place to place in my knees,
upper arms, wrists, fingers,and worsened throughout the day. My ANA was 1:640
and I tested positive for SSB-La antibodies, was sent to a rheumatologist who
diagnosed drug-induced lupus and put me on 20mg pred for 3 days with a 28-day
taper, to treat the muscle pain while the Humira wore off. My last Humira
injection was 20th May.

My GI mentioned trying 6MP next, and I asked her for the TPMT test, while
waiting for an appointment. Finally got to see her 9 July, and she gave me 25mg
6MP, with no schedule for increasing the dose. I asked her about Vedo/Entyvio
and was shocked she'd never heard of it! She is sending me to an IBD
specialist, kept telling me how "lucky" I am that I'm near good medical
facilities (I said I'd be lucky if I wasn't sick).

My symptoms have been coming back since I stopped the Humira, as I feared, but
my GI told me I wouldn't get worse that quickly, I'm not as sick as I think I
am, that the low dose of pred. should have had more effect on my UC. I've been
having lots of blood and mucous 4 x day, often feel constipated, bloated,
occasionally some tenesmus, afraid to pass gas. I'm getting really depressed,
don't want to end up back in the hospital. I really want to avoid another scope
at this point, can't see how it would help me and don't want to risk making
things worse; afraid the new Dr. will insist on one. I'm worried I'll run out of
medications to try.

I don't want to keep getting worse while I wait to see the IBD specialist - I'll
have to email my GI and ask for a prescription in the interim - can't understand
why she would have me basically off all meds for so long. Is there anything
other than pred for immediate relief? (I asked my GI about rectals and she was
insistent they're only for mild/moderate UC unless I had urgency.)

Thanks for reading this. I'd welcome any suggestions...

Had to stop the Humira late May - the Drs were quite concerned about my blood test results relating to kidney function, the rheumy said if I kept taking the Humira, it could kill me.

I assumed a diagnosis of drug-induced lupus meant the med was automatically discontinued. Unfortunately, I was told it also rules out all the other meds in its class - so all the other anti-TNFs are off-limits to me.

I've eliminated dairy, wheat; dairy seems to cause problems, but otherwise it's not that easy to tell what helps/hurts.

I asked my GI about probiotics; she mentioned Align but said she didn't think it was worth the cost. I've tried yogurt and Kefir, and had worse symptoms each time, so have been reluctant to experiment further.

25mg of 6mp is not a lot. You should be getting blood work and working up to a dose that gets you into the therapeutic range. I am sorry humira is no longer an option. I would think entyvio or remicide, cimzia or simponi might be options. Uceris also might be an option. Forgive me but I didn't see whether you've tried rectals? I think you said you're intolerant to mesalamine, how about steroid enemas or steroid foam enemas?

Thanks for the replies.

@garylouisville I'll have to try the VSL#3 - hope my insurance will cover it - all the copays for Dr. visits and meds are adding up.

@nssg I feel like my GI is abandoning me - I can't try the other anti-TNFs since Humira gave me drug-induced lupus, and she'd never heard of Entyvio. She's sending me to an IBD specialist, but doesn't seem to want to do anything in the meantime. I asked her about rectals, she said they're only for mild/moderate UC and for urgency.

@kazbern I'm trying to avoid another scope, since the last one landed me in the hospital. Once one has a diagnosis of severe pancolitis and is put on biologics, it doesn't seem as though subsequent scope results have much effect on one's treatment. The frequent scopes are great at satisfying the GI's curiosity and boosting their paychecks, but there is risk and discomfort involved - I don't want to be forced to have one.

Surgery is one of my worst fears at this point.

I've made a lot of dietary changes and eat a very limited, bland diet with no wheat, no dairy. I think stress has more effect, though.