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Need help in the middle of a four month flare..

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Ulcerative Colitis
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Posted 3/27/2008 1:46 AM (GMT 0)

Hi I am a 27 yr old female.  Have been diagnosed with U/C for two yrs now and still new at this.  I am currently severly anemic and had an iron tranfusion four wks ago which brought my H levals to 90 from sixty but now back down to 60 and waiting on the doc for his next move.  Have troubl slepping because of the stabbing cramps, back pain and trips to the toilet sometime fifteen times a night.  Bleeding has increased and have had a solid passing for four months.  I am currently on 6x 500mg salazopyrin, 4x 500mg dipentum, 1x 50mg purinethol and 25mg of prednisolone a day.  My U/C has moved from proctitis to cover the whole colon and all the symptom have changed or worse.  At the moment im on a bland liquid kinda diet with porridge, pasta and soup and broths but its hard to get all the food goups in when you have no appitite.  Can anyone suggest any kinda diet or how to get my energy back have been out of work for two months and cat manage more than two hrs work???  Should i be getting a blood tranfusion cause the iron one didnt last for long.

Posted 3/27/2008 2:43 AM (GMT 0)
Wow, Mary, it sounds like you're having a really bad turn. The only other meds I can think of would be Imuran (azathioprine) or Mercaptopurine, or a biological such as Remicade or Humira.

Usually we suggest rectal medications in addition to oral, but in your case I doubt that would be enough to get you into remission. Most of us do take a good probiotic to replace the good bacteria in our colons. You might want to try that, as it can help restore the normal balance to the colon.

Also, lactose and gluten intolerance are more common in people with UC and can cause flaring in sensitive people. Have you been checked for these? You might try cutting all dairy out of your diet for a week or so and see if that helps. I'm sure others here who have these issues will have more suggestions.

I seriously doubt you're going to increase your blood count or gain any strength when you're bleeding so much. At this point, I'd suggest concentrating on getting your UC under better control. Sit down with your GI and talk about options. One of them could be surgery. While that's a scary thought, it does cure the UC, so listen with an open mind.

I'm glad you found us here at HealingWell. The information and support of others with UC can be really helpful. Hope you're soon feeling much better.
Posted 3/27/2008 4:25 AM (GMT 0)
Eat very plain foods, try white rice, no breads, or anything with wheat in it...Eat hard boiled eggs, plain white mashed potatoes with no milk or butter. Have boiled white chicken, since its more tender than baked. Absolutely no sugars, sodas, dairy products, see how you do on that. Eat very very bland, try cutting out gluten. Go to local whole foods market , I heard they have a gluten free food section. Get their organic chicken, dump it in hot water and make a chicken soup, with no spices, no salt, believe me it will taste good. but instead of noodles, eat some white rice with it. Get some orange Juicy Juice, (it doesnt have any high fructose corn syrup, a big no no for the gut.) Anyway, get some of that and dilute it with Aquafina or something similar. Drink lots of liquids, no sodas or dairy or caffeine.
Posted 3/27/2008 3:13 PM (GMT 0)
Oh and one more thing,

don't drink very cold liquids, because cold drinks also stimulate our gi tract. Try drinking room temperature liquids. Good luck:)

Posted 3/27/2008 7:37 PM (GMT 0)
Mary - Welcome to HW. Sorry you had to find us, but glad you did. There are lots of knowledgable and caring people here. The biggest plus is that we know what you're going through!

I don't think your pred dose is high enough for your symptoms. I don't like pred and don't want to use it ever again, unless necessary. At 25mg, you should NOT be having night time BMs. You should remain at a higher dose until most of your symptoms subside. One side effect of pred is an increase in appetite. Another is an increase in energy. Those might be helpful to you. However, make sure to take a calcium supplement while on pred. I learned about the steroid induced osteopenia the hard way :(

Are you on any iron supplements? My first flare caused me to become severely anemic and I was on iron supplements for months to build back up.

I would also talk to your doc about Nestle Modulen or another form of liquid nutrition.

I'm sorry you're so uncomfortable and miserable with this flare. Hang in there!
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