Help! I'm on the never-ending train of being diagnosed then undiagnosed with microscopic colitis, diverticulitis and severe BAM

[Beechie2014]

Thank you firstly for reading my article, if you have knowledge to share then thank you for your persistent research and patience.

In 2019 I was diagnosed with Microscopic colitis, in 2020 my Gp undiagnosed me as she couldn't see it on the colonoscopy pictures. I'm not educated to any Drs level but is the clue not in name, Microscopic!! So been put on Meds for it, then got taken off them. Fast forward to last year when I was diagnosed with severe BAM, reading of 20+ and still not on any medication at all for my bowel. I have seen private consultants, I have asked to have my colon removed, I have begged to be referred to Switzerland as the symptoms and quality of life I have is worse than my terminally ill Dad and still I can't get treatment from anywhere. I have upwards of 15 bm a day or 4 days of being constipated and no food I have found gives me any relief from the pain. I have so little energy I live in my bedroom 95% of the time and guess what, still no medication for it. I already take that many pills I get deliveries from my pharmacy for free because I am unable to drive due to symptoms, in my bedroom I'm 3 steps from a toilet and it seems like I'm walking up a mountain!! Enough waffling, I'm 51 today and I feel as if putting me to permanent sleep would be more humane!

[Helloit]

hello beechie2014 if the medication you received initially worked was this prescribed by a consultant? If it was then could you ring their secretary and ask them to instruct your GP to give it back I am so sorry you are going through this I really hope that you get the help you deserve soon 🤍

[4someone in reply to Helloit]

Dear beechie2014,

I agree with Helloit that you should ask for your meds to be reinstated. Sometimes I have found that GP’s forget their knowledge is general and not specialised. Do you have any nutritional supplements prescribed for you such as Ensure, Ensure Juice Plus or Osomolite to help your gut rest whilst keeping you fed? For some years now I have been using Kefir. I was given a small culture by a retired nurse who found it helped her cancer. I have Crohns and it has helped me enormously. My consultant is surprised and happy with the positive effects it is producing especially during the pandemic when clinics were closed. Kefir really helps reduce my symptoms and pain. I have grown on my culture 11 times to make smaller ones for other people including one with colitis. The kefir in supermarkets is pasteurised so you don’t get the beneficial bacteria. You can buy starter grains from that online store named after a river. Lastly, Happy Birthday!

[Beechie2014 in reply to 4someone]

Thank you for my birthday wishes and reply. I have been prescribed nothing supplement wise of medical. My gp just prescribed a 3 month course of budesonide but of course I will go back to normal as no treatment is planned after the steroids finish! I would have my colon removed this afternoon if I could, but as we know a gp appointment is impossible never mind major surgery 🙃

[Beechie2014 in reply to 4someone]

Will look into live kefir. I tried every brand of fermented vegetables makes me sick x

[Beechie2014 in reply to Helloit]

The consultant I have atm is wary of prescribing me anything for chrohns, and offered me buscopan and the powders of which name avaids me for Bam atm. But they made so so constipated that I bled constantly. The consultant that diagnosed mc/crohns was a mid covid locum as it turns out and so that line stopped. Thank you again for replying ❤️

[37Polly]

I suffered from colitis for 20 years. Treated with many meds. I have been pain and symptom free for almost four years. Zero medication. First I began intermittent fasting ( look it up) , ate only once or twice in 8 hr window. No snacking. Then I began food elimination to see what works. Today I eat no sugar, no grains, no processed foods, no starch, and only low carb veggies. Never hungry. Lots of protein, animal fat ( no processed oils) low carb fruit and veg. and few raw veg. Love my meals. Husband no longer has sleep apnea ( we are both slim). It’s an absolute life changer!

[Beechie2014 in reply to 37Polly]

I have spent 5 years eliminating foods with no change in symptoms or pain. I don't eat gluten, dairy or fat, and limit sugar to lowest possible. I have 1 meal a day, rice and protein which lessens the burning slightly so small blessings for that. My Bam is causing havoc and having a domino effect I think. Thank you for your advice ❤️ sorry you were the treated the wrong way for so many years, how dare I moan! I'm only 5 years in...ps I have lost 3 stones too x

[37Polly]

honestly. No doctor ever suggested. Insisting I had this for life. Good luck.

[37Polly in reply to 37Polly]

I found good animal fat ( not excessive) fish, whole dairy , eggs, small lean steak or ground beef with low carb cooked veggies shocked me. No issues, if I added grain of any sort or starch major problems. I know we are all different ( husband careful w dairy ). I also make my own Kefir… actually with half and half for less sugar.

I just encourage you to keep trying. After years of pain hospital stays and daily bloody diarrhea, this feels miraculous. Doctor shrugs, ignores what I have done and says “ sometimes it just goes away 🙄. I’ll keep thinking good thoughts for you.

[Beechie2014 in reply to 37Polly]

And if I even look at a yogurt I'm crippled for days! And vegetables are very iffy for me. And for about 18 months I went on the brat diet, the gluten crippled me 😅♥️

[37Polly]

my sympathies…it’s awful I know. Resting the entire system with simple water, or bone broth gave me greatest relief. I am just home from a hospitalization where I could not eat my own diet and struggling a bit. Daughter brought me homemade bone broth each day that helped me through. Worried to see how next few days go. Antibiotics have been rough. I am eager to get back to “MY DIET”. Hospital food is the worst…in USA it’s all sugar and chemicals. Good luck. Don’t give up.🤞🤞🤞