Ulcerative Colitis - San Diego,CA

Updated on June 01, 2012
T.C. asks from San Diego, CA
9 answers

I just got diagnosed with Ulcerative Colitis. Anyone else out there have this disease who I can get some insight from? Any diet changes that have helped? I'm of course stressed out about it & I need to not stress and just make appropriate life changes. Any information and support would be much appreciated! I have my apt on Tuesday so the doctor can inform me of things! But I would like feedback from people who are actually going through the same thing. Thank you!

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S.L.

answers from Champaign on

My husband was diagnosed in 2005 with UC. He was on Asacol for a long time and has had two or three flare ups since, which he has to be on suppositories to get things back in control. He recently was switched to a new medicine and after about 9 months, he asked to be back on Asacol (even though he was taking more pills - he felt better). He doesnt' have a great diet - but he drinks fruit smoothies daily and swears he feels better those days and he has issues with Pork. No other diet changes have been made. He does see his doctor every six month.

He has no family history and no indication of how he got this.

Good Luck.

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B.E.

answers from New York on

My mother has struggled with this for quite a few years. She believes she got it from a particular antibiotic she received from the dentist. No one else in the family has it, but I've encountered plenty of other people suffering from it. It can be quite debilitating during a "flare-up". She had to go through quite a few different medications, include steroids, before finding something that could control it. For the most part, she has lived pretty normally the past 3 or 4 years.

I recently heard on NPR that someone "cured" his UC by swallowing a particular type of parasitic intestinal worm. Whenever the worm passes on, he swallows another and lives virtually symptom-free. Apparently they are studying this and taking it quite seriously. Sounds gross, but it shows promise.

Take care!

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B.H.

answers from Sacramento on

I was diagnosed with UC in 2002. My symptoms are well controlled with medication (Asacol). I limit my dairy intake. At times I have also felt better when limiting caffeine. I also suffer from IBS. Any form of exercise helps (I enjoy yoga and walking). If you are prone to anxiety and depression you may try treating these conditions with medication and/or therapy, as it made a huge difference for me. Getting a diagnosis changed my life. I rarely left the house the year before I got my diagnosis. I almost didn't graduate from college due to my "stomach problems." After being diagnosed and starting medications I went on to law school and passed the bar. Good luck to you!

A.L.

answers from Dothan on

I have had 8.5 inches of colon removed in 1998. Have sooooo many tummy probs.. I have NOT been diagnosed with this tho' the Docs keep bringing it up.

There are many sites online for ppl with different probs. go into your internet & put in support groups, once there go to Ulcerative Colitis, you should be able to quickly find a group who can answer any/all questions you may have. I use two different groups, one for medical (spine related) & one for custodial grandparents I have 'met' some wonderful, caring ppl in both groups that I stay in contact with away from the group!

Good luck to you & am hoping for wonderful outcome, the medical field is ALWAYZ changing & finding new cures & medicines!

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R.K.

answers from Boston on

A relative of mine has had UC for 40 years. He has had only two major hospitalizations, in the early years. He decided to take control of his life and health and has been able to live a wonderful life. From him I have learned:
1. The doctor may prescribe medications, which ususally need fine-tuning. If the medication is not working well, keep a journal, and report exactly what is happening to your doctor.
2.Each person with UC can tolerate different foods, but often it is moderation that helps (limited dairy and citrus fruit for my relative).
3. Most folks do best eliminating alcohol.
4. Educationmom is so right about a full nights sleep EVERY night.
5. Establish a daily schedule of meals, medication, exercize and rest.
6. Be in charge. No one else should be nagging to help you. It is so important that you be in charge.
7. Be a little selfish. Do what you need to do for yourself and don't over-extend yourself. Your health is important to you and to all you love.
8. If you are not with a specialist, please ask your doctor for a referral. The correct handling of this diagnosis is key to your situation.

All my best.

M.S.

answers from Los Angeles on

My husband has lived with UC for 20 years. He was diagnosed during college. The main things that helps him:
1) 8 hours of solid sleep per night
2) low stress level
3) Lialda (we got a prescription card from his GI so it only costs $10/mo instead of the normal $90!)
4) Powdery fiber twice a day--this is huge. You can get it at Trader Joe's--it's called psyllium husk. They have pills you can take, but he says they aren't as effective.
I'm sorry to hear of your diagnosis, but the good news is, it really is controllable. Take good care!
www.educationmom.com

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K.M.

answers from Kansas City on

This runs in my family. My grandfather died of it (in 1974) and my aunt struggles with it every day. I know she is on a lot of medication. She also has to be very careful with her diet (no alcohol, junk food, etc). She is at the point of needing her colon removed, but she's just not ready to make that leap. She is 57 and has had it for 20+ years.

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K.H.

answers from Indianapolis on

I don't have the disease, but my dad does. Originally diagnosed as Chrones, then changed to Ulcerative Colitis. I know that he was on medicine (lots of different ones) for a long time and the only thing he really changed in his diet (that I am aware of) was cutting back on dairy and anything with kernels (corn, popcorn, etc).

I hope you are working with a great team of doctors who are able to help you! My dad struggled for years with flare ups. He finally had his colon removed 8 or 9 years ago and has been much healthier and happier since.

Good Luck to you!

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P.K.

answers from New York on

Well if it gets to a point it cannot be controlled, have colon out. However,
I think there are many new drugs out to try. I had my colon out and it was
the best decision I ever made. Picture of health immediately. Never looked
back. Good luck.

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