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WHAT WORKS!!!??? *FRUSTRATED*

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Ulcerative Colitis
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Posted 3/22/2010 6:44 PM (GMT 0)
So, I just wanted to say I love this board, it really calms me down knowing there are so many people going through the same problems as I am.

But, are any of these meds/ methods of treatment actually helping? what works? ive been on meds for 2 years now, but theres been NO change. I still bleed, i still have urgencies, and upset tummies. Is there anyone out there thats actually happy with the way they feel? what do i do? the pills arnt working, what are some alt treatments that work?

 

Posted 3/22/2010 6:55 PM (GMT 0)
Well, we need to know what all you've tried, honestly, to be able to answer your question. I'm doing very well on Apriso (oral mesalamine) and mesalamine enemas.
Posted 3/22/2010 7:33 PM (GMT 0)
After almost 25 years of never achieving remission, I am THRILLED with Remicade. It's an infusion, every 8 weeks, it takes a couple of hours and is very, very expensive (but covered by insurance).
Posted 3/22/2010 8:14 PM (GMT 0)
when i was dx i was put on salofalk pills. i was in complete remission for yrs. i felt fine, didnt even remember i had uc most of thetime. now however the same meds arent working well. so i guess its a trial and error thing.
what are you taking?
Posted 3/23/2010 3:57 PM (GMT 0)
Its really along the lines, of what works for you. Everyone can be different, what works for one person may not work for the next. The only thing which seemed to work properly & get me into remission, was a short stay (5days) in the hospital for IV steroid therapy.. That got me in remission and kept me there for almost a year...
What helps through each day?!.. Pentasa supp's.. (once at night, and one in the morning).. I also believe that VSL#3 (Probiotic) is having a positive effect for me, again what works for me, may not work for you. - Great isn't it this UC..lol
But yeah, Im looking (again) for the same answer that you are - Avoiding surgery at the moment.
Posted 3/23/2010 4:51 PM (GMT 0)
I have been on the Specific Carbohydrate Diet (SCD) for almost 3 years and I feel like it has made a big difference. Even before I was dx with UC, I had horrible gas, bloating, cramps, and constipation. Sulfasalazine helped me for the first year after dx, but then it stopped doing the job.

On the SCD, I was in remission and completely med-free for almost 2 years. Then I got some IV antibiotics for an outpatient surgery and within 2 weeks started bleeding. My flare is just in my rectum and has been intermittent since a year ago. I'm back on sulfasalazine and working through various rectal meds to get it beaten into submission. The bleeding has stopped but I still have some irritation. However, the rest of my colon seems totally fine - no urgency, regular, perfectly formed BMs once or twice a day. That in itself is a huge improvement over the quality of life I had before even being diagnosed. But I'll be the first to say the diet is a huge committment and overwhelming at first. But I just remind myself, "Better time spent in the kitchen than in the bathroom." :)
Posted 3/23/2010 5:30 PM (GMT 0)
Post what you have tried and it will help us a little. One of the frustrating aspects of this disease is just the fact what helps one may not help another. There's not a lot of consistency. Even within myself. What works one time may not work the next time. I have spent a ton of money trying different things, but if I hadn't tried and failed I would not have known if it helped or not. I don't think any of the oral meds helped me to any significant degree. I do remi now, but still not in complete remission. I feel much better, but just not the way I used to.
Posted 3/23/2010 5:39 PM (GMT 0)
Hello E.Empire

Me too. Meds never really seemed to do anything except for steroids (worked wonders) and Rowasa enemas (stopped bleeding). But not until I started to get desperate (or more desparate than usual) did I try diet change one more time. I tried it before, tried everything really that I read on the web. My cupboard is full of supplements and peppermint teas etc. Nothing including high cost meds ever did a thing in 10 years.

I am on a modified (by me) SCDiet. First eliminated gluten and my bleeding ceased in a couple of days and didn't return. Then I eliminated other grains and almost all dairy. This is pretty close to SCD. But I don't tolerate fruit/juice much at all so that's out for me and no homemade yogurt either (I would LOVE to be able to eat that and/or fruit).

It's the biggest improvement for me in 10 years and gives me hope that I can control my disease this way. In another 9 months I'll have a colonoscopy done to see what's what but my scopes never showed much damage even though my life has been severely changed because of symptoms. I don't think doctors really get that part of the disease or don't want to because there's nothing they can do.

I have a dream of being able to change insurance companies to get a lower rate and not being denied coverage because of UC. I am years away from Medicare. I am very happy the healthcare bill passed but don't expect my current insurance to go lower lol.

There are several different diets people are following for improved UC symptoms. Choose one and try. SCD is a healthy way to eat although it takes effort to get your refrig and pantry stocked with the right foods. What do you have to lose?
Posted 3/23/2010 6:03 PM (GMT 0)
Hi-
They still have no clue about my diagnosis. Maybe UC maybe Crohns maybe ?
3 surgeries early 2009 for Sigmoid resection(lovely Peritonitis),loop ileostomy(thankfully reversed Memorial Day weekend, and gallbladder removal. Recently diagnosed with Bilateral Uveitis.
I now go only once or twice a day(compared to 20-30 as soon ago as January)
I grind one teaspoon of Psyllium seed(Frontier sells it) and one teaspoon of Flax seed in one of those little Mr Coffees. Then I add a heaping tablespoon of Orange Metamucil(not sugar free) mix with a glass of water and chug each afternoon. I also take a PB-8 probiotic in the morning with a heaping teaspoon of Metamucil and one in the evening with just water.
Big healthy BM's. Maybe it will help you out.
Posted 3/25/2010 6:06 PM (GMT 0)
wow, thanks for all the replies. it really varies greatly from person to person. I took Salofalk for one year, but it was giving be terrible back pains, so my dr switched me to Mezavant. And I dont think im taking to it to well. Its not doing anything for me at all. I guess it will take a couple more tries till i figure out what works for me. I was only DIAGNOSED over a year ago ( but ive been dealing with the symptoms for a few years) , and its a sacry thought that its going to be a CONSTANT battle. You guys have been dealing with this for so many years and havnt found the one true answer. Im really interested in the types of diets you guys are on. My dr said nothing to me about my diet, and im not allergic to anything. I really dont know what knids of foods are making me bleed, i think i should try this no gluten thing - but it seems so overhwelming! thanks for your thoughts/answers:)
Posted 3/25/2010 6:13 PM (GMT 0)
PEETY - I find it inspiring that youre an attorney, and you deal with UC, - i find it hard to deal with it with my little job :P
NATE - thx for the tip I will try your little concoction ;)
Posted 3/25/2010 6:24 PM (GMT 0)
You were on Salofalk pills and then switched to Mezavant?

Were you not on any rectal meds? I would suggest the Salofalk retention enemas.

Are you in Canada or UK?

q
Posted 3/26/2010 12:01 AM (GMT 0)
~Q~ i never tried any enemas, no rectal meds- dr never mentioned them. Im in Canada by the way
Posted 3/26/2010 1:40 AM (GMT 0)
Well, now that you have "knowledge" about them....discuss it with your doctor. I strongly encourage you to request them. I'd suggest the Salofalk enemas or the Pentasa enemas.

Not weird your doc didn't mention them...just frustrating as to how many doctors don't.

Where in Canada are you?

q
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