Ulcerative Colitis Forum

Some people suffering from Colitis do not respond well to drugs and dietary changes. After consulting with a doctor, my guess is that the best option would be surgery.

I was diagnosed with UC 5 yrs ago.  I have tried almost all regiments.  I'm tired.  My question is when does one decided enough is enough and have your colon removed?  Anybody who has had the surgery, can you tell me what was the final straw that made you decide to do it.

Survey URL: https://catalysttools.washington.edu/webq/survey/laurie1/100450
 
Greetings,

I am a graduate student in the Masters of Science in Clinical Informatics and Patient Care Technologies (CIPCT) program at the University of Washington School of Nursing.  I am working on my thesis, titled “Assessing Patient Attitudes Towards Using Information and Communication Tools to Report Inflammatory Bowel Disease Flare-Related Signs and Symptoms”.  The overall goal of my study it to understand how IBD patients currently monitor and manage their conditions and how they perceive technology could be utilized to facilitate communication with their health care providers.
 
I am writing to request your assistance in completing this survey.  I am asking people 18 years and older for anonymous participation in a study to assess patient attitudes towards using the information and communication tools to report signs and symptoms of IBD flares to their clinicians.

The results of this anonymous survey will help provide insight into people’s perceptions of using information and communication tools to monitor and manage their IBD signs and symptoms.  This information will be used to assess the ability to utilize technology in new ways in healthcare delivery that assist people in managing chronic conditions.

I recognize and appreciate the value of your time.  The 30-question anonymous survey takes approximately 5-10 minutes to complete: Survey URL: https://catalysttools.washington.edu/webq/survey/laurie1/100450

Only participants 18 years and older are asked to complete this survey.  Thank you for your participation. 

If you have any questions or comments about this study, I would be happy to talk with you.  Please contact me at laurie1@u.washington.edu.
 
For additional rights about the rights as a participant in this study, please fell free to contact the University of Washington Institutional Review Board Office at hsdinfo@u.washington.edu or via phone at (206) 543-0098.
 
Thank you so much for participating in this important study.  The time and information provided is greatly appreciated and may impact the options that IBD patients have when seeking advice in the setting of an IBD flare. 
 
            Sincerely,
Laurie J. Morelli, RN, BSN
Candidate for graduating class 2010 – Master of Science in CIPCT

Hello, I had a colonoscopy the other day which confirmed UC.  I have had constipation on and off for 3 months now with cramping and losing blood and mucus, it got so bad I was in hospital for a week.  I don't know much about the disease but the information in this forum has helped as now i know the tiredness is related, some days i struggle getting up for work.  i have also had mouth ulcers and joint pain in my hands and feet, is this also related? has anyone else had this?  I have to start treatment next week with an enema daily for one month, has anyone else had this, what am I likely to expect can anyone tell me an expeirience of when they were first diagnosed. Any help would be appreciated.

My son (20yrs) has been diagnosed w/ UC last fall, he has been on Asacol since. He has noticed his muscle weakened. He had UC symptoms last month again, with the increase dosage of Asacol helped the UC symptoms but he muscles got cramped frequently, join pains, cold/hot feelings, he even couldn't walk or move. We rush him to the local emergency, but the GI Dr's couldn't figure out he had UC issues since there were no typical symptoms. They were keep saying Ascol is safe to take and not too many side effects. But it has paralyzed my son. His muscle pains stopped after he stop taking this drug.

As the admin of this site I choose to market AloeElite so my opinion may not matter to you but for what it's worth the people I've personally referred have had great results.  They rave about the customer service and say that when they are taking it and not eating too crappy it works great.  For the regimen you're used to in the military I wouldn't imagine this to be a problem. 

Take your pills and don't eat too much crap are the orders.

This site doesn't get a lot of traffic so the sales that are here barely pays for itself but I leave it running since there seems to be a community that's helping each other here. 

As a marketer I get all of their promotion emails and I just saw one pass through here saying $99/bottle for military.  I'm sure if you call in they'll know what it's about.  I know you guys don't get paid what you're worth so I hope that helps a little. 

Get well guys and be safe.

I had a very successful J-Pouch/colostomy surgery, and have been rid of UC for 12 years now. Immediately after the surgery I developed food allergies to things that I had been eating ALL the time, and I can't kick the feeling that I may have always had a minor allergy to these foods that caused the UC to begin with, since some allergic reactions reportedly involve getting ulcers, diarrhea, etc. These foods were such a large part of my diet. They are peanuts, apples, grapes, peaches, pears, plums, and lettuce (I know, it sounds crazy). As soon as I could eat real food after the surgery, I had a Reese's Peanutbutter cup and became very ill, vomiting. I thought I had not recovered fully enough. Later I found out that I was allergic to peanuts. I ate peanutbutter and jelly sandwiches almost every day since I was a kid. The fruit allergies, which I also found out about after the surgery (after much trial and error and confusion) were also a huge part of my regular diet. I am allergic to the fruit juices, cooked, peeled, whatever. I still wonder if I had realized this before if I could have avoided so much of the pain that I went through. I did not have any reactions to these foods before the surgery, but I may have been getting irritated from these foods. I now know I have a peach allergy, which tends to develop into adverse reactions to other fruits including apple, apricot, plum, cherry, nuts (such as hazelnut and walnut) and peanut. The protein (allergen) that causes this kind of allergy is tough and the allergens survives in processed foods such as purees, nectars and juices. As a result, individuals with this kind of allergy cannot eat even cooked peach. Please be aware of allergies like these and try to monitor what foods you are eating,, because it may be and allergy that you can control by eliminating a few common foods from your diet. (PS. If not I strongly recommend getting the surgery, I have had no problems and don't have to worry about colon cancer or anything else).

I would avoid crunches and anything taxing to your abdominal, but I do exercise with mild-cronic ulcerative colitis, I've had it for 10 years. I ran a lot in highschool and continue to do so as long as my energy is good and I am not ill. Keep your exercise regimen simple to start, allow your body time to adjust to the new activity, and gradually add-in other aspects. I really enjoy pilates for muscle strength and long-distance running for cardio, but I've also done spinning (which targets every body area while being lenient to your abdominals). Good luck, work out when you feel well and sleep when you're tired - that's a biggie, too!

I was diagnosed with UC in 2000 as a 16 year old girl, and had been on and off a combination of meds that I was either allergic to or weren't strong enough. In addition to those, I took prednisone for years before switching to azathioprine, which currently keeps me in remission for the majority of a year. After being on azathioprine, I'd typically, I'd have a flare-up once in the spring, lasting 2-3 months, using prednisone during that time.  This year, the flare-up was the worst I've ever had and so the Prednisone dose went up to 40mg and tapered down after a few weeks. This side effects are still with me, months later; peripheral edema and moon face still lingers, as well as increased body hair, increased blood pressure and heart rate, headaches and itching.

As an alternative to 4 Asacol 3xday, which I'd been taking since the flare-up, I've been switched to Lialda at 4, 1.2g tabs once a day. Still dealing with years of weight gain from Prednisone and this most recent use particularly, I've now been on Lialda a week and have already gained 5 lbs. In addition, the edema has worsened in my face and lower legs to the point that the skin on my legs is stretched to the limit and bone landmarks are gone. My skin feels heavy on my bones and I'm uncomfortable, and no amount of exercise seems to touch it - it lessens the swelling for the day, but it's back again the next day. I do not use salt or eat salty foods.

I'm so frustrated. I feel helpless and fed-up with these relentless side effects. I'm toying around with the idea of surgery, but wonder if there's anything else I can do? I don't want to risk the surgery and end up one of the small group of people that has to have the ostomy their whole lives...I could use some suggestions or surgery stories of your own to help me in my decision-making. I know I'm not as bad-off as some, but this is really getting to me. Thank you in advance for your input.

I was diagnosed with UC in 2007 while out on recruiting duty. now im on my 2nd limited duty and i have had a colonoscopy done in january of this year but there is no evidence of it. I am still having the symptoms and move my bowls anyehere from 6 to 8 times a day. the medds they have me on are obviously not working. I have also had a small bowl through done just recently in may and no evidence. this is so frustrating. the civilian GI doesnt know what it could be that is causing my symptoms since he says the blood work and the colonoscopy and small bowl through dont show any evidence at this time. i just want to get out and live a normal life cause i cant even do my job in the corps.  i have been in for 9 years and my contract is until dec 2013 and i dont think i want to be in till then living like this. if any one can help me it would be greatly appreciated.