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SUZIRD1 Posts: 1
2/15/15 12:20 P

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I just started taking the VSL#3 samples and seem to be doing great with them. The Pharmacy wants twice what Amazon is charging!

KAYYVAUGHN's Photo KAYYVAUGHN Posts: 42,001
2/11/15 7:25 A

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I take the probiotic VSL#3. I have been ordering it from Amazon. It comes with frozen small ice packs. I think it does help. It was the one that my doctor recommended.

My name is Kay, and I live in Northwest Georgia.


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POODLEZ's Photo POODLEZ Posts: 103
2/14/12 11:49 P

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You might want to talk to your doctor about a probiotic called VSL#3. It is for colitis and UC patients. It is over the counter but I have to go through the pharmacist to get it as it must be kept cold.

SARALEIGHM's Photo SARALEIGHM Posts: 3,855
4/13/11 10:33 A

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I forgot to ask my doctor when I was there, so I decided to look it up in my handy IBD Self-Management book. Here's what it says:

"Acetaminophen is the preferred over-the-counter pain medication because it does not upset the stomach like other pain relievers can. Use it for headaches and other pains as well as to fight fever. The other common class of over-the-counter pain medicines, like ibuprofen, naproxen, and aspirin, can all cause inflammation and ulceration of the stomach and small and large intestine and should be avoided if possible. Several studies suggest that regular use of ibuprofen-like medications (nonsteroidal anti-inflammatories, or NSAIDs) can increase the risk of active disease (a flare) as much as 30%. These anti-inflammatories work differently than the anti-inflammatyories used to treat ulcerative colitis and Crohn's disease. When absolutely needed, like after dental or orthopedic work, conservative use of NSAIDs, with food, for the shortest amount of time is recommended."

So there you go.

Sara Leigh


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NINA379's Photo NINA379 Posts: 89
4/11/11 10:29 P

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I think you're not supposed to take Ibuprofen (Motrin) because it interferes with the clotting of your blood. If you have any gastrointestinal bleeding it can make it worse.

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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
3/7/11 8:08 A

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I'll have to ask him again when I see him later this month. I'm pretty sure it had something to do with potential damage to some organ but I can't remember which. That was two and a half years ago.

Sara Leigh


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KHAMELEON1's Photo KHAMELEON1 Posts: 3,594
3/6/11 7:40 P

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I have taken Aleve almost daily for about 8 months and have not had any negative effects from it. I was a little worried that my kidneys might be affected by the roughly 13 pills I take every day. However, my monthly blood tests have always come out clean.

Just curious why Aleve and Motrin are off limits according to your doc?

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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
3/5/11 2:24 P

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I was told to only take Tylenol (and the generic versions) for pain. Aspirin, Motrin, Aleve, and all those are off limits according to my doctor.

Sara Leigh


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3/5/11 12:58 P

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Omega has a laxative effect? I have been taking an omega combo (3, 6 &9) for about a year with no issues. I also have a touch of osteoarthritis in my hips. I have some 800 mg motrin I take when it is more painful than a headache. But have found if I take them all the time, it will cause a flare-up. The motrin causes a bit of diarrhea.

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MISTYCATBABY's Photo MISTYCATBABY Posts: 185
1/14/11 11:12 A

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I'll try out the probiotic pills. I'm not a great eater of yogurt but I gag my way through it! One thing I find really useful is taking an Aeries everyday. I tried other allergy medications but some make me sleepy. This has really helped and I mentioned it to my specialist. Also don't let your pharmacy give you a generic medication. Mine gave me something generic in place of ASACOL and I noticed a problem almost immediately.

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KHAMELEON1's Photo KHAMELEON1 Posts: 3,594
1/14/11 11:07 A

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I know. I didn't realize the probiotic usage right away either. I started with eating probiotic yogurt, but I wasn't very good at eating it consistently. When I didn't notice any real effects, I started looking into the matter and found several articles stating how you have to eat the probiotic foods consistently for several weeks to see optimal results.

So I switched to using probiotic pills and just take them at the same time as my UC meds every day. It's just easier. They seem to be working so far -- I haven't had flare ups since. But I'm not sure if it's just one of the medications or the combination of all three (miralax, probiotics & apriso) that's working best. I'm under the "don't knock it, if it works" impression. So I'm willing to continue the regime like this for awhile.

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MISTYCATBABY's Photo MISTYCATBABY Posts: 185
1/14/11 11:01 A

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I had a brain wave about the problems I've been having and the connection to the vitamins I take. I have arthritis quite badly in my knees and was researching things I could take. I started taking Omega 3 twice daily as well as Lutein for my eyes. I looked both of those up and yes they do have a laxative effect. I dropped them from my diet immediately and my colon has settled down immensely. I'm also eating the probiotics Activa every day. I'm hoping this helps like you said.

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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
1/14/11 10:54 A

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That's very interesting about the probiotic pills and Miralax/polyethylene glycol. I've used kefir in smoothies because of its probiotics, but I don't drink them daily. Perhaps I should try that, although I've been in remission for a while now.

Sara Leigh


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KHAMELEON1's Photo KHAMELEON1 Posts: 3,594
1/14/11 10:12 A

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I've found that a combination of my prescribed medication (Apriso) and daily intake of probiotic pills & Miralax (or the generic equivalent polyethylene glycol) works well to keep me regular without causing flare ups.

I work as a biochemist/cell researcher, so I've been trying to keep up on the latest medical research on UC as best I can (though it is not directly related to my own research). UC tends to offset your bacteria balance in your colon which can sometimes lead to flare ups or at least aggravate your colon. So adding probiotics can help to balance out the natural bacteria content. Just a note though, you'll need to take the probiotics for several weeks to reach optimal results (kind of like the Activia yogurt). I've been on them for 2-3 months and so far so good. (You can buy large bottles of 100 pills or more for $10-15 at vitamin stores.)

As far a Miralax and the other polyethylene glycol (PEG) drink mixes go. Some doctors claim that long term use is bad for you - which as far as I can find isn't true. In fact, most new biomedical devices are coated in PEG before being inserted into the body because it's considered biocompatible. I couldn't find any recent research stating any longterm harmful effects either and neither have the doctors I've talked to. I've taken it daily for over a year and not seen any noticeable harmful effects from it. I'd be interested to know if others have.

These are just suggestions that may help depending on the severity of your UC. I have a pretty severe case myself and they seem to be helping for now. But honestly, the best medicine so far has been to limit my stress levels.

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MISTYCATBABY's Photo MISTYCATBABY Posts: 185
1/4/11 3:17 P

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I remember when my doctor put me on the baby food diet and I added one food at a time. I used to drink goat's milk. That was before the development of soya milk. Right now my ulcerative colitis is in remission. However I've had two accidents in the last six months where I didn't realize I had to get to the bathroom fast. Also my pharmacy gave me a generic drug for my Asacol and that was really affecting the number of times a day and the speed of which I had to get to the bathroom. This situation is very frustrating. I'd like to walk more (as far as my knees can go) but an very anxious. Has anyone else got this problem.

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STARTLIGHT's Photo STARTLIGHT Posts: 1,470
7/29/10 4:04 P

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I was in the hospital twice in two months last year with flare ups. I have been doing pretty good since then. I know this sounds silly, I eat baby food vegetables because even over cooked carrots I react too.
I eat a bland diet which at times is frustrating but I just remind myself I could be in the hospital. It's just a matter of mind over matter, and my health matters. emoticon

Edited by: STARTLIGHT at: 7/29/2010 (16:04)
I am prepared to go anywhere, provided it be forward. David Livingstone

You don't need endless time and perfect conditions. Do it now. Do it today. Do it for 20 minutes and watch your heart start beating. Barbara Sher


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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
7/17/10 9:37 A

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I'm so familiar with that white diet! Hahahaha. Actually, that's pretty much what I ate as a child, a very picky eater. I now believe that my body was telling me something by making certain foods unattractive to me. Of course, once I became an adult, at oh, 30-something, I learned that a lot of the things I never ate as a child were quite good. Perhaps that's why I kept UC out of my life till my 50s. I followed pretty much of a safe diet. Hahahahahaha!

Sara Leigh


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7/15/10 4:08 P

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Oh... forgot to mention, when having a flare-up, doing the white diet helps. LOL! Everything you eat is white... white bread with jelly on it, white rice, eggs, mashed potatoes, etc... basically no fiber. It helps by giving your colon a rest. Not good for loosing weight, but good when you are bleeding alot and having a flare-up.

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7/15/10 4:04 P

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So sorry you had a horrible reaction to the sulfa in it. It is one of the original drugs for colitis so is it is inexpensive (more than the other meds). Hopefully you have found good drugs for yours.

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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
7/15/10 3:51 P

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Welcome to the team! I tried azulfidine and had a horrible reaction to it. I'd never had a sulfa drug, so I didn't know I was allergic to it. I agree, UC is a PITA! Hahahahaha.

Sara Leigh


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7/15/10 1:10 P

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Hi! I am new to this forum. Anyway, about me, I have had ulcerative colitis for about 20+ years now. I have found there is no way to avoid flare-ups. Food does not cause any flare-ups. It may cause some diarrhea, but not a flare-up and different foods at different times affected me - for a few months it was fried stuff, another time it was squash - now I can eat both with no problem. The only thing that seems to cause my flare-ups is stress - UC is a real PITA disease, literally (PITA = Pain in the a...). Just keep your sense of humor about everything and the stress level goes down. I take azulfidine 2x a day for my colitis - it is a TNT (tried and true) med that has been around for a while. I have tried the others, then my guts start hurting me, so I just stick with the one. I still have all my guts LOL! and am now doing once a year colonoscopies since I am at a higher risk for colon cancer.

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SUPERWOMAN_LISA's Photo SUPERWOMAN_LISA Posts: 696
1/29/10 10:06 P

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When I was diagnosed, I had diarrhea for 5 or 6 weeks before I was hospitalized, meanwhile was misdiagnosed with C. Dif and treated for that, but still had symptoms. When I was admitted to the hospital, they were so focused on a different problem, that I was told about my severe anemia, but not treated for it or tested for blood in stool. My mom, an RN had to fly over 2,000 miles to talk to nurses and docs about why my blood is so low. "she has to be bleeding from somewhere", plus I was constantly complaining about the severe abdominal pain. They finally did stool cultures and found blood, brought in a GI who did an EGD and a colonoscopy along with biopsies and a few weeks later I was called at home with the dx and prescribed Asacol. I went a year and a half without one major flare-up, but was hospitalized again last April with dehydration and infections.

I am about to see my GI again for a check-up/possible colonoscopy, but also because I had my tubes tied and they found a Rectovaginal Fistula while they were looking around in there. In other words a connection like a tunnel betwee the Rectum and Vaginal walls. So that might have to be surgically repaired and is a complication of the UC. You never know how long you have between flare-ups and you never know how severe a flare-up is going to get. I've had minor flare-ups and I've also had major ones.

"I am a Superwoman, yes I am. Even when I'm a mess, I still put on a vest with an 'S' on my chest, oh yes, I'm a Superwoman."
-Alicia Keys - Superwoman


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SARALEIGHM's Photo SARALEIGHM Posts: 3,855
1/17/10 2:07 P

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Welcome to the team! I didn't say anything to anyone when I started to have symptoms until after 6 months. Big mistake, but I kept thinking it had to do with my diet. Problem was, my good, healthy diet was only aggravating things. I've eliminated anything with seeds, skins, nuts, raw vegetables, and spicy foods, but I'm still trying to get my system stabilized. I think I'm there now, but the past few days have been iffy and I may have set myself back a bit by having Indian food last night for dinner. Gah!

I'm on the same dosage of Asacol and have been trying Imuran on top of that in the hope of replacing it. I think it's not going to work, though, because it's apparently affecting my liver function. Prednisone is what's getting me back to "normal," but I can't be on that indefinitely because I have osteopenia.

Let me know if there's anything we can do in the group for motivation and support. Any kind of daily goal or challenge.

Sara Leigh

Sara Leigh


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JDELEE223's Photo JDELEE223 Posts: 5
1/15/10 12:12 P

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Hey Everyone,

I just joined spark and I'm so happy I found this group. I was diagnosed with colitis when I was 17 back in 2002. I had symptoms for about a month before I ever said anything more so because I was embarrassed about having to go to the bathroom all the time, but once I realize imodium and pepto bismol was not even helping I went to the dr. They ran test after test after test and about 2 1/2 months later I finally got a colonoscopy where they discovered the UC. I've been taking asacol (4 pills 3x's a day) and have had very few flair ups in the 8 years over living with it. I just had my second colonoscopy back in may of 09 and my dr. said it was in full remission.

The one thing that he told me that would possibly cause a flair up is super spicy food, and food with tiny seeds in it like poppy seed bagels, or strawberries because the seeds can get caught in the ulcers cause cause flair ups. I've found the seed one to be very true cause it seems every true. Also alcohol is starting to bother me, I went my entire early 20's not having a symptom but now a day or 2 after a night out causes pretty bad flair ups, so now I just avoid it. Oh and Aleve cold and sinus medicine is very harsh for me.

Over all like as alot of other people said it's with trial and error that you find what works and dosent work because everyone has a different reaction to things with UC. I hope this helped some people and good luck to everyone getting to a state of remission.

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FUNMEG's Photo FUNMEG Posts: 5
11/23/09 4:09 P

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I used to take Asacol, 4 pills, three times a day, and then my DR switched me to Lialda. 4 pills in the AM and that's it! They are a bit bigger, but they are the same exact med, just time released differently to get to where it needs to go! I am finding that both exercise and diet have helped my UC. However, I have also noticed higher fiber foods have really been a pain in my "you know what"! So i have been trying to stay away and eat more natural fiber, like fruits. Hope this helps!

Edited by: FUNMEG at: 11/23/2009 (16:10)
It's All Good!


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YVONNE401's Photo YVONNE401 SparkPoints: (0)
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8/12/09 7:21 P

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Hi, All!

I know that taking meds 3x a day can be a pain. But the easiest way is to take your meds with your meals.

The type of foods you eat have everything to do with UC! The best type of foods of low residue (meaning low fiber foods).

I hope this helps.

God Bless,

Yvonne

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FEATHERSTITCH's Photo FEATHERSTITCH Posts: 460
8/11/09 10:36 A

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Most of this has been said but I'm a Mom so I don't mind repeating myself.
1.Take your meds. Whatever they are, remember to take them. I know the ones you take 3xday are a pain, but take them! Carry extra with you.
2. Watch your diet. My Dr. says diet has nothing to do with my UC. But losing the extra poundage can't hurt.
3. Exercise, exercise, exercise. It really has helped me with the "I have to go this second" feeling I tend to get in the grocery store (and the library and the video store and Jo-Ann...)

May your bobbin always be full!



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2/18/09 8:41 P

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Thanks! I'm on Asacol.

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XMARSUPIALX's Photo XMARSUPIALX Posts: 23
2/17/09 8:31 P

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I think Lialda is a UC medication similar to Asacol.

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2/16/09 6:36 A

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What is Lalda?

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CHEERMM9 Posts: 16
2/15/09 11:51 A

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I was diagnosed in November - after having some symptoms for nearly a year. I was on my way to work one morning and literally couldn't make it - had to run home and go straight to the bathroom. I went to the doctor a day later and they ran blood work. When I got the results from the blood work 3 days later (weekend) - I was sent immediately to the ER with a blood count of 6.2 - later heard it should be 11 - 15. I went through 4 units of blood transfusion and several days of misery before they did a colonoscopy and found the UC - I was on prednisone and now am on lialda. In addition, I have had to take iron, and prevacid as well as potassium. I'm going back to work tomorrow and I'm hoping I am on the mend. I am finally able to go grocery shopping without thinking I need to run to the restroom.

XMARSUPIALX's Photo XMARSUPIALX Posts: 23
1/16/09 1:06 P

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Oh, my last message was directed toward GINW1977, to avoid confusion!

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XMARSUPIALX's Photo XMARSUPIALX Posts: 23
1/16/09 1:05 P

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I had my colon removed as well. Like you, it was best (and hardest!) decision I ever made. While I think it is necessary to explore all drug treatment options before having surgery, it was absolutely necessary for me. I can't imagine ever being that sick again, or taking that many medications.

It's why my screen name is "marsupial," since now I have a pouch! I'm glad your j-pouch is working so well for you! Have you had pouchitis yet? I got my j-pouch in October 2007 and still haven't suffered from pouchitis (knock on wood). I visit my surgeon next week for my annual check-up, but not anticipating any problems.

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1/16/09 12:17 A

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Hi, All!

After having UC for 12 years I was recently told (after my last colonoscopy last June) that my UC was gone. My doctor released me into eating a normal diet (and now my weight has started to get under control. I lost 50 pounds since April of last year. My advice for anyone diagnosed with UC is to go see a nutritionist. The meds won't work by themselves unless you change your diet. The foods that are good for a normal person are bad for a person with UC (such as whole grains, etc.).

It was a difficult 12 years involving many hospitalizations due to flares. At one point, my weight was so low (due to the dirreea) that I was given Assure drinks. Even though my weight was low, I was very sick and unhappy. I am highly allergic to sulfa so I couldn't take the normal medication prescribed and I was given Asacol instead along with others to keep my UC under control. I have been on prednisone for the past 12 years which resulted in weight gain and so many other "lovely" side effects. At one point my UC was so bad that my doctor wanted to give me the surgery. But I was subborn and insisited that I stay on the meds. At one point I caught Listeria (with a temp of 106). But I am alive and here to give my story to others. Do not give up. There is light at the end of the tunnel. My advice to you is to use surgery as a last resort and to always get a second opinin before having any surgery.

I hope my sharing my story was helpful to at least one person. If I can help you in any way, please let me know.

God Bless,

Yvonne

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GINW1977's Photo GINW1977 Posts: 282
10/7/08 2:55 P

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I had UC for 17 years, and last April I finally broke down and had my colon removed and a pouch created from my small intestine. Best decision I have ever made. If you are suffering, please look into this surgery. I wish I would have had it 10 years ago. I wasted so much time being sick.

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ANGELAPAIGE08's Photo ANGELAPAIGE08 Posts: 14
9/6/08 7:31 P

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This has been extremely helpful. I was just diagnosed with UC about 1 1/2 months ago. I had was REALLY sick for like 3 weeks. Now im on steroids and Asacol(sp?) Im going to be off of the steroids by next tuesday! Im excited about that. Hopefully things continue to go well after Im off of those. The doctor said i could eat anything except to watch how much dairy I eat. I have noticed that dairy, wheat, and a few other things tend to upset my belly a little, but sometimes are worse than others. Thanks for everyones info!!!

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ASHBUG1's Photo ASHBUG1 Posts: 4,405
6/18/08 1:37 P

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can you tell me a bit about thiss disease please?
i had a big time hernia operat. in dec. got my last bandage off mid may then i started having a pain about say 6 in to my left from about mid stomach area
its a pain like something sore or bruised inside
i went to doc. he mentioned diverticulitus[ is it same as you all seem to have]
any way the pain lasted about 2 weeks easing up slowly, then sat pain came back again.
but popcorn doesn't seem to bother me i don't think i ate some about 3 days before pain came back and i eat a lot of salad.
only thing i have been eating more of is jalepenos

can you give me some symptoms and what it is ?

oh, i had a cat scan yesterday in a couple weeks i will maybe know something for sure.

lee

you can if you think you can


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GIANTPIXIE SparkPoints: (0)
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3/25/08 3:37 P

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Edensday - You take digestive enzymes? Do they help? What kinds?
I control my UC with diet, and I'm always looking for new ideas.
Thanks!

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EDENSDAY's Photo EDENSDAY Posts: 20
3/22/08 12:39 A

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hello (i'm new too)

i agree with GIANTPIXIE- it does get easier with time. i was diagnosed over 6 years ago- my GI doctor would tell me that eating a well balanced diet was key and that there is no evidence that food have an effect on the flare ups she constantly would tell me to reduce my stress- however since i did my own research and realized through the process of elimination that i could not eat wheat, oats and corn...my life has been so much better. I believe a have an actual allergy to corn which caused my skin to break but- since i no longer eat it my skin has cleared up. my mood has also changed I feel excellent most days. the grains i eat daily are millet, rice, and quinoa(favorite).
unfortunately it seem s i can not broccoli- which i love. i love popcorn too (it was one of my major binge foods- however after eliminating it out of my diet and reintroducing it- the side effects where so great that i want nothing to do with corn again).

my diet is mostly whole foods diet i do take digestive enzymes and magnesium supplement

hope this helps

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3/7/08 11:36 P

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Oh, and Beth, my sensitivity to gluten developed suddenly, though it took a couple years to identify. If you're suddenly having a problem, it could be because you developed a new trigger too.
Best of luck!

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3/7/08 11:35 P

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Hi all, I'm new.
I've had UC for 18 years. I can promise you, it gets a lot easier with time. Over time you will learn what your trigger foods are, and what your trigger situations are (stress, certain body positions while eating, etc.) and you will gain the resolve to avoid them.
I have been off medication for a long time, but I've been on steriods (last time on prendisone I started to get the 'buffalo hump' and 'moon face') and taken most of the different meds out there.
My advice to those who are new to UC.
1.) Keep a food journal. If it goes in your mouth (medication, vitamins, food, water, etc.) then write it in your journal. Also write down how you're feeling, any symptoms, etc. It is a lot of work, but you will be oh so glad in the long run.
No excuses, you have to do it to find out your triggers. I've tried all sorts of eating stratedgies. I spent 2 years vegan trying to avoid my trigger foods. Turns out that I'm gluten intolerant. Any form of gluten will lead to a UC flare up. I also think using my asthma inhaler can lead to troubles (I still use it, breathing is more important than avoiding a flare up, but I work to control my asthma.) I know others with UC who have problems with dairy, or beef, or mint. If you find your food triggers, you will start to gain control.
Oh, and when you do identify your triggers, get them out of your home if possible. The less temptation the better. Your family members would rather have you healthy than have your triggers in the house.
2.) I agree with Beth, proper rest, healthy diet, and (when appropriate) exercise are all important. UC can really take it out of you, so be sure to take good care of your body. The healthier I am, the less likely I am to have a stress flare up.
3.) If you can, get an allergy test. I had to find my food allergens by living on a diet of steamed vegetables and rice for months. An allergy test could speed things up.
4.) Don't eat your trigger foods. It's just not worth it. It took me months, and a very supportive partner, to be able to avoid gluten. The urge to cheat is high. If you do eat something that you know will make you ill, journal the whole painful and bloody experience. Read that journal the next time you feel the urge to reach for the french bread (or whatever it is that gets you).
5.) Fish oil helps some people. There are even medical studies on it. I try to eat salmon and tuna 2-3 times a week, and I feel it when I don't. I also use walnut oil (high in omega-3) and soy milk (high in omega-6) for simialr reasons. I've had others tell me evening primrose oil and flax seed oil helped them. Oh, and some people have luck with Aloe juice.
6.) Yoga. It works for me and others. Gentle exercise and stress relief in one. Meditation or prayer are also good.
7.) Eat enough iron. You are losing a lot of blood, and it will catch up with you over the years. I can't really tolerate the iron supplements, so I eat a lot of black beans, blackstrap molasses, and steamed dark green veggies. I also coock in a cast iron pan (I'm not sure if it helps, but it can't hurt.)
You need to find a way to get your iron. Some people have luck with geritol, others can take the iron pills, and some of you will have to find high iron foods that don't cause flare ups.
8.) Do research on the internet. Most Dr.s will say food has nothing to do with it. They are wrong, as my food diary and the diarys of my friends prove. I healed myself and got off meds without a Dr.'s help because I had no medical insurance, and I did it with the help of the internet. I'm not saying fire your Dr., I wish I would have had one. I'm saying you should make use of ALL your resources.
9.) Learn breathing techniques to deal with the pain. Find a birthing coach who will teach you. Your breath is powerful. If controlled breathing can get a woman through labor, it can help with your cramps. The pain wont vanish, but it will become managable.
10.) Probiotics. If you take antibiotics you will need probiotics or your digestion will take a long time to sort itself out. Yogurt, miso, or something from your pharmacy, whatever you can tolerate. Start small, because some give you gas, and gas=pain. Miso helped me slow down my digestion and heal.
There is life with UC. Most days I feel like a normal person. Occasionally I get problems (the coughing from a cold can set me off) but for the most part I'm okay. I can hike, and dance, and go on vacation without worrying that I'm going to get sick and spend the whole time in the bathroom.
It took a lot of hard work to get here. I had to leave my job and find a new job that wasn't as stressful (and I celebrate my choice daily.) I had to keep a journal and find my triggers. I had to avoid my triggers (man, that one can still be tough.)But I got here, and you can too. This problem isn't the end of the world, though it can feel like it some days. Take it one day at a time. Be kind to yourself and it will get easier.
Wow, I think this is my longest post ever. Sorry if it's a bit unorganized, it's late, and I'm writing from the heart.

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BETHERSJR's Photo BETHERSJR Posts: 15
1/21/08 3:18 A

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Hi all, I am new to this group and thought I would jump in on this discussion.

First, my prayers go out to all who have been recently diagnosed with this illness and those who are suffering from it now. Hang in there, and feel free to send me a msg if you need an empathetic shoulder!

I have lived with UC for 17 years now and was flare free for about 12 years until February of 2007. Before then I was doing so well I had even been off maintenance meds for five years.

I can't be sure what triggered my flare but I was VERY sick with some cold bug about two weeks before my flare started. My GI doctor says that had nothing to do with it, but I am entitled to my opinion. :)

I also was very run down and tired, being still fairly newly married and trying to figure out how to balance it all.

Given the years that I have dealt with UC, here is what I have found:

1) Get your rest. As my mother says, "If you don't have your health, you have nothing." I realize that some have children and husbands to care for but consider this - you can't care for them when you are so sick with a flare that you can't stay out of the bathroom and are too weak to even care for yourself.

2) Stress is a huge thing to keep under control because it weakens your entire immune and thus makes it easier for a flare to develop. I try to keep the stress of the day in check with my faith. If you are a believer, hang on to the promise that God will take care of your tomorrows. (You know, the birds in the field...)

3) Diet and exercise. After my first flare in 1990 I packed on the weight as I was on and off of Prednisone for five or so years. I was hungry all the time and ate EVERYTHING I craved that my system would tolerate. Oreos were most comforting!

This last time I was on Prednisone for about three months at 40mg a day until the tapering off started. I still packed on weight, but I stayed away from the sweets and I think that helped.

To avoid problems with my condition, I try to not eat too much of anything that would cause diarrhea. I eat a lot of Progresso chicken noodle or chicken and rice soup along with Lean Cuisine meals. Turkey wraps seem to do well with me too. I try to limit things like nuts and eggs and lettuce to just every once and a while and it seems to work for me. Also, nothing too spicy or ladened with onions.

But, it's been said before, this illness is a very individual thing. You know your body better than anyone so listen to what it says. My first doctor told me to stay away from milk and dairy and eat lots of fiber. I found that exactly the opposite is what quiets my system. :)

Thankfully my UC is in check now with Asacol and Azasan. No passing blood, no "run for the border" and I am finally back at the gym working out and heading on a cruise next month. I feel like my life is back on track again.

Sorry to ramble on so much on my first post to this group, but I felt like having had this disease for so long, I had something to contribute. Also one of my loves in life is writing. :)

I promise not to be so verbose on my next post.

-Beth



To everything there is a season and a time and a purpose under Heaven!

For I know the plans I have for you, says the Lord... JER 29:11



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SHERRILOU47's Photo SHERRILOU47 SparkPoints: (0)
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1/13/08 3:27 P

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Welcome to the group. Sorry you are going through a flare up now, they are rough. The weight loss from uc is not a good thing. When I was so sick a year and a half ago, I lost 35 lbs. and was very excited, not realizing what it was doing to my body. When you have uc and lose weight in that way, your body is not getting the nutrion it needs. I had to have $1,000 worth of dental work done my teeth because of the loss of nutrition to my body. Once I had everything under control, I gained the weight back, and now I am losing it by eating the right way. I guess what I am trying to say is try your best to eat things that are good for you if your body will tolerate it at all. I will be praying for you..
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Sharon

" Don't tell the Lord how big the problem is ,Tell the problem how Great the Lord is!"

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SADLER19 Posts: 6
1/13/08 3:20 P

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Hello everyone,

Well I am going through a flare up right now. At Christmastime I had pneumonia (which I was having a flare up right before the pneumonia). Now the dr. thinks that because of the stress of the pneumonia I am having another flare up. I didn't eat for almost 2 weeks. I lost 7 pounds in 1 week. I have just started eating again. I think we can all try to avoid triggers but we are going to have flare ups and that is just part of this disease. I am still trying to figure out what my triggers are. I have had this disease only since october and I have had one flare up after another. It sure is starting to get depressing. The only good thing that has come from uc is the weight loss.

Good luck to everybody.


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CD2604268 Posts: 5
1/12/08 9:01 A

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I think that the causes of flare ups are an individual thing. I find that a high fiber diet actually helps me. When I eat a high fat diet - alot of cheese and beef, I have more flare ups. Stress also does not help. I guess the best thing to do is to try to find and avoid your "triggers" that cause flare ups.

STASHSHEL Posts: 4
1/8/08 9:28 A

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that just about describes how my episodes begin. the main factor being "stress" I've put myself on a liquid diet again because I've started with the symptoms again. so I figure, what they fed me, helped calm the UC. I was a bad girl and had mexican food the other day when my husband and I went out for date night and it wasn't pleasant! I guess, stay strong and I hope you feel better

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1/5/08 4:19 P

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Hi everyone, I have uc for about 2 yrs. now. 2 yrs. ago, I had clostrodium difficile which destroyed all of the bacteria in my colon both good and bad which ended in destroying a lot of the lining in my colon. I was very sick for months and could not get any relief. My Dr. had me on 8 anti-inflammatory capsules daily(colazol)and bentyl, and also antibiotics. I was also taking at least 4 immodium ad daily just to survive. Someone then introduced me to Himalayn Goji Juice, and I started drinking 2 oz. twice a day and within about 4 months, after talking with my dr. I was able to get off of the medications. I still have an episode on rare occassions, but nothing bad. My colon has returned to basically normal and I can eat anything I want now from salad to nuts without any problems. My dr. also started having me take probiotics which are not expensive and you can get them at your drug store. What they do is put good bacteria back into your colon. I thought some of this information might be helpful because I truly understand how horrible uc can be and how it can truly control your life. If I can be of any help to any of you , please let me know.
Sherrilou

" Don't tell the Lord how big the problem is ,Tell the problem how Great the Lord is!"

I can do it!
I want to do it!
I will do it!

Tomorrow will be affected by what we do today!

Leader of "Women Wanting to Follow the Lord"

www.sparkpeople.com/myspark/groups_i
ndivid


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RACHBOMB974 Posts: 4
1/2/08 11:16 A

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It varys from person to person but I will tell you things I eat that dont bother my stomach. Soups (chicken noodle, chicken and stars, chicken and rice), saltines, ritz crackers, bagles, white bread only, turkey, cheese, jello, italian ices, popcicles. I also drink alot of gatorade, water, and soda. I hope this helps a little! Also do you have anything for when you stomach cramps? I was prescribed something for if that happened its called bentol. Might be something to look into.

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SADLER19 Posts: 6
1/2/08 9:11 A

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I was also recently diagnosed with UC (Oct 2007). I had diarrhea for 5 weeks and was very ill. I ended up in the hospital for 5 days before they finally did a colonoscopy and found out I had UC. I had a flare up in November and I am just getting over having pneumonia. It has been a rough 3 months for me. Hopefully the new year will be better. I also stay away from foods that I might think will cause a flare up. I haven't had nuts or popcorn since Sept. I have tried red meat, but that seems to cause some problems. My problem is it seems like everything I eat causes some type of stomach upset (not necessarily quite a flare), but some stomach cramping. I hardly eat anything anymore. Any suggestions?

Thanks, and I hope everybody stays healthy in the new year.

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SILVER1110's Photo SILVER1110 Posts: 105
12/27/07 9:46 A

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flare ups, unfortunately, are an individual thing. i tend to internalize stress, so whenever i'd go through a REALLY stressful situation (job, boyfriend, etc.) i'd usually end up with some sort of flare, some worse than others. also, some foods set me off - i can't eat anything high fiber, like kashi cereals, etc. or smoothies from the smoothie king, etc. something they add sets off my tummy. it's really a hit or miss thing with what foods you can/can't eat. my GI said flares have nothing to do with food but i don't believe that one bit! now, i really just stay away from high fiber & raw veggies, or even cooked veggies like broccoli & brussel sprouts, anything that's hard to digest. good luck! feel free to ask if you have any more ?s & i'll help as much as i can!

Never confuse having a career with having a life!


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RACHBOMB974 Posts: 4
12/24/07 11:46 A

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How often do you get flare ups? I was just diagnosed two months ago and I havnt had one yet but I am kind of nervous for one to come.

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RACHBOMB974 Posts: 4
12/24/07 11:44 A

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I am on Asacol and it has been working really well for me. I take 6 pills a day, 800mg. I was on steroids for about a month but only 10 mg so I didnt have any of those crazy side effects. But when I went to get a second opinion the doctor told me I could go off the steroids so I did and I am still okay.

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SILVER1110's Photo SILVER1110 Posts: 105
12/24/07 12:42 A

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I've had UC for over five years. Was just admitted for 8 days in november due to a serious flare - dehydration, intestinal infection, blah blah blah. Good news is they started me on Remicade which seems to be a miracle drug. Bad news is I developed a blood clot from my calf to my thigh so I have JUST now been cleared to be fully weight bearing & can go back to work after the new year. For UC, I was on a regimen of 10-15 pills a day - never took steroids b/c I refused to take them. But honestly, I was horrible about taking the medicine. The Imuran wasn't bad but the huge Colazal horse pills (9-12/day) were horrible. I'm a firm believer in Remicade right now. No noticeable side effects & my tummy is slowly getting back to normal (still introducing different foods, veggies, fiber, ie, to see if i can tolerate) but other than that, i'm a-ok. good luck! feel free to ask me any questions you might have!

Never confuse having a career with having a life!


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RACHBOMB974 Posts: 4
12/16/07 1:13 P

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I was very recently diagnosed with UC. My main thing is keeping away from foods that I even think may cause a flare up. I dont know if they will but I generally just stay away from things such as red meat, wheat bread, nuts, popcorn, and milk. I think it is to early for me to have a flare up but I just went off of steroids so we will see.

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STASHSHEL Posts: 4
11/20/07 11:42 A

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I ended up in the hospital about a year ago with ulcerative colitis. thank god treatment was just a liquid diet and observation. that was the most painful affliction I've ever had. I still get flare up's and was wondering how to avoid them, if it's possible. I was told to keep my stress level down. puhlease, with rising costs of fuel, food and life in general, not likely. how does anyone else deal with this?

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