Colitis

Nearly three out of four ulcerative colitis (UC) sufferers (73 percent) responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse (64 percent), their sexual relations (75 percent) and their emotional state (82 percent).
How do you cope with colitis ? Are you struggling with the emotional effects ? Even if a problem shared isn't a problem halved it may help to discuss it with people in the same situation.

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DeniseLowe
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Posts: 1
Joined: Tue Jun 13, 2017 4:22 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 19 Apr 2015

Colitis

Postby DeniseLowe » Tue Jun 13, 2017 4:51 pm

I was diagnosed with ulcerative colitis just over 2 years ago. Once I got the disease under control which did take some time, I have since been able to manage it well. I eat only certain foods avoiding red meats and cook everything in olive oil. I take vitamin supplements including omega 3 fish oil capsules and exercise regularly. I take asacol 800 mg 1 tablet twice daily. For the last year I have started suffering with fatigue which is gradually getting worse. I always sleep well but often struggle to get through the day and sometimes need to have a sleep during the day. There aren't many days when I don't feel tired and sometimes I am exhausted. I recently spoke to my Doctor at the hospital about this he suggested I had a blood test for vitamin D deficiency and stool test (both results came back OK), he then suggested I come off the asacol for a while to see if this made a difference. I am not going to do this as I have been on asacol for over 2 years and this time last year I felt fine. I am wondering if I should try a different med as I have read that the inflammation can give out a protein that causes fatigue and maybe I need something to reduce the inflammation more in order for the fatigue to improve. Can anyone help me with this?

philayl63
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Posts: 214
Joined: Wed Aug 25, 2010 6:07 pm
Date first diagnosed with IBD: 0- 2-2001

Re: Colitis

Postby philayl63 » Thu Jun 22, 2017 1:29 pm

Hi Denise, any form of infection can take it out of you and leave you tired, the body is busy fighting the infection. Before I had the colon removed I was on Mezavant, this seemed to hold the disease at bay most of the time until it became too much for the colon, might be worth discussing it with your specialist, I imagine there are new medicines coming on the market all the time.

pastelito
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Posts: 24
Joined: Mon Jan 19, 2009 7:13 am

Re: Colitis

Postby pastelito » Sat Jun 24, 2017 8:22 pm

Hi Denise,

Sounds like you're having a rough time. Have you spoken to your GP about this?

I also have severe problems with fatigue. I've had this as long as I've had Ulcerative Colitis (over 10 years), and the fatigue has continued even though I've been in remission for the past 3 years.

When I first discussed fatigue with my GP (about a year after the Colitis was diagnosed), he said that it could be a symptom of the Colitis and since I'd had a massive flare and wasn't yet in remission, he was hesitant to diagnose me with Chronic Fatigue Syndrome. I think this was reasonable.
In the intervening years, I moved to a different city and my current GP diagnosed me with CFS last summer. She said that since my Colitis had been in steady remission for several years, it was unlikely to be related to the fatigue.

Each time I have an gastroenterology outpatient appointment at the hospital, I try to discuss the fatigue, but they're not interested. My impression is that our consultants are interested in the 'plumbing' part of our Ulcerative Colitis, but they're not concerned with anything outside our gut. Although I have found this frustrating, I've come to terms with this situation and realised my GP is the best person to talk to about the fatigue.

My advice would be to go and talk to your GP about the fatigue. Describe your symptoms to them in detail and see what they say. If the first GP you see is unsympathetic, go and see someone else. It may be worth getting your iron levels tested in case you're anaemic and your GP would be the person to advise about this.

Like Ulcerative Colitis, Chronic Fatigue Syndrome (or ME - Myalgic Encephalomyelitis) has no known cause. It tends to be a diagnosis of exclusion, so your GP may wish to do other tests. Again, like UC, there is no known cure, but your GP should be able to give you advice on 'pacing'. This is an approach where you modify your lifestyle, balancing activity and rest, in order to manage the fatigue. It won't cure the fatigue, but it will hopefully stop you burning out. I have had to accept that this is the only way forward for me.

You might find reading 'The Spoon Theory' to be helpful: https://butyoudontlooksick.com/articles ... on-theory/

Warmest wishes.


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