Diverticulitis: Hello to everyone, this is my... - Behçet's UK

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Diverticulitis

Zoie profile image
Zoie
6 Replies

Hello to everyone, this is my first post although i have been reading healthunlocked since my BD diagnosis last year. It is comforting to know that I am not alone although I feel like I am, especially with my family and friends. They do their best but as my doctor said to me " Doctors don't really understand this disease so it is hard to expect others to " I am 57 year old female and suffered with symptoms (mouth ulcers, joint pain, uveitis, skin lesions myocarditis and endocarditis) for several years before my diagnosis. I am currently on Azathioprine, Colcrys and Prednisone, which has just kept my flares under control I haven't been completely out of a flare since before my diagnosis. But the reason I am writing is now I have diverticulitis and was wondering if anyone else has had this intestinal issue. I'm a little down as i feel that I now have another aliment to add my list.

Thanks again for this post :) and all of you BD people out there !

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Zoie
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billi profile image
billi

Hi and sorry you are having a bad time just now. This disease is so unlike any other as you are probably realising. We often have such different symptoms and most of the docs don't agree which are due to BEHCETS or are something different. I have suffered with BD for over 30 years now and seen many changes in diagnosis (took most us 12 years or more), treatments and knowledge but it is getting better. Thanks to the BEHCETS society we now have the Centres of Excellence and this site plus their own site which is full of useful information. the best advice I can offer you is to rest when you need to not just when you can and take the meds, and try to live your life through the remissions. Be strong and positive and you will still be able to have a reasonable lifestyle. As you yourself say you are not alone and many fellow sufferers are here whenever you need us. Welcome and please keep in touch.

Wishing you well.

Hugs

Billi

Zoie profile image
Zoie in reply tobilli

Thank you for your words of wisdom, resting when I need to and not just when I can, Wow, that is totally me. One of the hardest things for me is slowing down and taking care of myself. I needed that reminder, thank you !!

westyorkshiregal profile image
westyorkshiregal

Hi Zoie, Yes I've had diverticulosis for years. I was finally diagnosed when i turned 30. I had been bleeding pretty bad and had a colonoscopy. The bleeding was a burst ulcer but i found I had diverticulitis also. I've had some really bad attacks. I always thought the pain was in my left ovary, so even as a young person i must have had it. The older i get the more BD seems to attack my digestive system. I recently had another colonoscopy and it showed my colon was very narrowed from all the attacks among other things!! I know how you feel, its so disappointing and depressing to have something going on all the time. I hope that you start feeling better soon x

Zoie profile image
Zoie

Seems like anything that has to do with inflammation usually ties into BD issues. So I'm not too surprised. I did have a colonoscopy 2 years ago but that was before my BD was in full force. Little by little I am learning how to cope with the uncomfortable aliments and how to take care of myself. Thank you for your concern and support. I really appreciate your feed back. Zoe

barbievalverde profile image
barbievalverde

My husband, as well, has complex ailments yet to be diagnosed and medicated, that he feels misunderstood by the medical arena. I see he is not alone in what the docs cannot put a finger on, leaves the patient 'out on a limb' and therefore none of it is clearly explained to family and friends, either.

My heart goes out to you from your writing. Each day must be a journey in your life, finding the quality and desire to go on.

Wishing you well today,

b.

Witchygirl profile image
Witchygirl

Hi, I came across your post on the nhs website. I have no knowledge of BD but my mother has Divirticulitis forgive my spelling. She was told to eat fibre but not too much and to avoid anything with seeds and pips. Tomatoes need seeds removing but otherwise are ok, strawberries, raspberries, nuts even though they have no seeds they can get stuck in the little pockets of the intestines if I remember correctly. No white bread. Beans and peas are off limits too as they have a skin that is easily parted from the rest of it. Hope this helps you to avoid pain. Mam was sent to see a dietician I think who advised her what and what not to eat. My sister in law hasn't seen anyone about her diet and as a result is in and out of hospital when it acts up as pain can be tremendous.

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