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Symptoms still not controlled and I can't eat anything! Need advice.

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Ulcerative Colitis
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Posted 1/18/2017 9:48 AM (GMT -5)
Hi everyone! My UC symptoms have been getting progressively worse for the past few months and I'm really stressed out by my doctor's refusal to take this seriously. He is one of the founding members of the Chron's and Colitis Center at Massachusetts General Hospital, so I have trusted him for a long time simply by reputation.

However, in the almost two years of going to the center, he has only ever had me on two different mesalamine drugs (Asacol, then Lialda after my insurance stopped covering asacol). He has had me on prednisolone and budosenide, to which I got full-blown Cushings syndrome and had to stop. I have been taking daily hydrocortisone rectal foam, and am on 25mg amitryptiline daily. My bleeding and mucous have stopped, and my last calciprotein test showed no inflammation.

BUT -- I continue to be unable to eat any kind of real food! I have loose stools and urgency multiple times a week, as well as severe cramping several times a month. That level of symptoms only persists as long as I eat primarily junk food -- processed cookies, candy, bland frozen meals, plain rice with some baked tofu. I can occasionally tolerate beans and bananas as well. If I eat ANYTHING else -- soft-cooked gentle veggies, green smoothies, anything remotely healthy -- I don't even make it through the meal before I have to run to the bathroom and will have severely painful diarrhea for the next several hours. I'M LOSING MY MIND OVER NOT BEING ABLE TO EAT FOOD!

Here is the big problem: my doctor insists that there's no other medications to try, that we've done everything we can, and that my symptoms are not severe enough to warrant the immunosuppresants. I agree with the last, but I refuse to believe that there's only two drugs to treat ulcerative colitis. I need some advice on treatments! And, foods to eat (I'm vegan).
Posted 1/18/2017 3:34 PM (GMT 0)
Uceris and 6MP, along with enemas
Posted 1/18/2017 10:49 AM (GMT -5)
Generally you want to max out the anti-inflammatory mesalamine before going higher up the medication ladder: 4.8 grams of oral lialda (4 pills) and a nightly rectal-route 4 gram rowasa enema.

I don't see the enema within your meds list. Ask for a prescription for rowasa.

If that isn't enough then go for an immunomodulator at a low dose like 50mgs of 6mp, or 100mgs of imuran. If you're struggling than a dose on the low end of the range does make a lot of sense.
Posted 1/18/2017 12:14 PM (GMT -5)
Some healthy foods give me bad symptoms like you but IMO it is more IBS reaction than UC, although it is impossible to be sure. The fact that you are vegan makes food choices more difficult because most of them ARE healthy.

I haven't been able to figure out a common thread to my trigger foods but insoluble fiber is one for sure. I drink organic carrot juice every morning and my gut reacts to it almost the same way as caffeine (but I still continue drinking it). However my symptoms are temporary, an hour or two unless I continue eating/drinking trigger foods/drinks.

When I remove most of my trigger foods/drinks my gut settles down and doesn't react as much or as badly when I eat one of them. It seems to be the amount and frequency that sets things off.

One OTC suggestion is to take Benadryl (I like the dye-free version) because it calms things down. I used to take it before bed and always got a great sleep. Be careful taking it daytime and don't drive long distances because it will make you drowsy. I no longer need it even at night but it really helped calm my IBS down.
Posted 1/18/2017 4:30 PM (GMT -5)
Time to eat meat.....

For meds, mesalamine pills, enemas or suppositories, and steroids orally or by enema / sup are the only doctor prescribed meds before immunosuppressant's as far as I can think of.
Posted 1/18/2017 6:35 PM (GMT -5)
there are more than two meds, but if the inflammation is controlled, then symptoms alone is not a reason to go to stronger IBD meds.

If there is still inflammation (shown by a scope or maybe blood/stool test for inflammation) then immune-modulators or biologics could be considered.

But the gi should still treat the symptoms. Upto 1 in 5 UC patients have symptoms after inflammation is gone. This could be IBS.

also what you can and can't eat is puzzling. Not usual to tolerate junk food better than well cooked vegetables. You may want to consult a nutritionist to help sort out exactly what does and does not matter. Is it fiber? Sugars? Fats?

You can ask about IBS kinds of meds, or you can ask to revisit the topic of moving up the med scale.

Enemas will help with urgency, but have very little to do with immediate reactions to food, so I do not know how much they will help you.

good luck
Posted 1/18/2017 7:34 PM (GMT -5)
My gut prefers junkfood as well. The one thing junk food doesn't have is a lot of fiber, and vegetables are loaded with fiber. Maybe your gut is sensative to fiber? Some common sensativities are gluten and lactose.

General safe for uC flare foods are bland non-spiced chicken, potatoes, rice, and various soups and broths.
Posted 1/19/2017 7:46 AM (GMT -5)
I agree with imagarnder that you could also have ibs. I fall in that category too. Like you and ipoop I don't respond well to foods high in fiber. As a former vegetarian I can attest that it sucks. I added a probiotic and a fiber supplement and both seemed to help me tolerate more veggies. Safest veggies for me seem to be zucchini, green beans and butternut squash.
Posted 1/19/2017 1:58 PM (GMT -5)
MEAT !


(former 15 year ethical vegan, now ethical carnivore)
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