Ulcerative colitis?

[Mumof3boysLondon]

Back story: B12 levels were 74 in May 2024 and only 284 in August 2024 after 7 injections. Also low in iron and vitamin D. Currently 9 weeks post-jab (1 week to go until my next one) and just want to cry with exhaustion. Pretty sure I will move to self injecting soon in between prescribed jabs but just holding off until I get latest bloods back to see what NHS will do/give - being tested for MMA, inflammatory markers, iron, vitamin D, zinc on Monday.

This post is because I recently used MyHeritage to find out more about my family tree and did two things afterwards:1. Downloaded my raw DNA data and ran it through a website my cousins have used as they have a hereditary iron condition (checkiron.com)

2. Upgraded to the health plan on MyHeritage

As a result I can see I am genetically predisposed towards ulcerative colitis and colorectal cancer (plus a couple of other things - osteoporosis and thyroid issues, but have had thyroid checked recently so don't think this is an issue currently). After discussing with my family I found out my great nan died of bowel cancer and my nan had emergency surgery to correct a blocked bowel plus abnormal bowel cells. I have also had IBS symptoms since my teens, ie, for 2+ decades. So I strongly suspect my b12 issues are due to an issue with this area.

Does anyone on here have firsthand experience of ulcerative colitis? If yes what were your symptoms and how did you get a diagnosis (if you have a diagnosis) please?

Many thanks in advance.

[GoneWithTheWind1972]

I have Crohn’s disease, which is one of two inflammatory bowel diseases. (the other one being ulcerative colitis disease)

My only symptoms were extreme fatigue for a long time. My GP recommended a pathology test to check my iron levels. I had iron deficiency. GP made some interesting correlations as I was going through peri menopause which couldn’t be the cause of my iron deficiency so, I was sent for a colonoscopy which confirmed Crohn’s disease.

Some people experience many bowel symptoms but I didn’t. It was completely a shock to have a Crohn’s diagnosis.

My PA diagnosis preceded my Crohn’s diagnosis by about two years.

Both are gastrointestinal related, one stomach and the other small bowel. In particular the ilium for me.

Most people experience different symptoms in ulcerative colitis and Crohn’s..

Colonoscopy and a pill camera confirmed my Crohn’s diagnosis and medication is for life.

[Mumof3boysLondon in reply to GoneWithTheWind1972]

Thank you! V helpful

[lifegems]

pernicious anemia is caused by atrophic gastritis. If you have PA you need to get an endoscopy/colonoscopy to check things out . It’s good practice anyway .

[NisajuBlue]

Hi there, so sorry to hear you’re exhausted, it really is something people think they understand as everyone experiences tiredness as part of life but you can’t even comprehend until it happens to you the level of sheer and utter exhaustion and the effect it has on your body and mind. I hope you find out more with your bloods.

I was diagnosed with PA in March 2022 after 20+ years of misdiagnosis but I feel I have been affected my whole life. My Paternal Grandmother and her Mother & Aunts had PA which I always told Doctors! Anyway by August 2022 I had decided to self inject and have been doing so since. Unfortunately I have not had much healing so far despite injecting twice a day for the last year but I am being investigated for Addison’s Disease and get the results on Tuesday but in May 2024 I had to go into hospital with horrendous stomach pain, now, I had to have a Hysterectomy in October 2008 when still young and then developed extensive and severe adhesions and had some issues with not often having bowel movements after that but it never seemed to worry any Doctors and I didn’t get much pain or anything…until last May! I was diagnosed with Ulcerative Colitis! I also have Rheumatoid Arthritis, it’s like Pokémon, I seem to be collecting them all!!

I have always wondered what was wrong with me and why was I plagued with health issues as I come from a long living family of people with very few health issues even into their 90’s, my wee Gran with PA and RA also lived well into her 90’s and we were very similar and very close but I always seemed to get one thing after another. I then found out my Mum was adopted which was a huge shock so started looking into her family history through DNA and Genealogy sites. I know it sounds morbid but I just wanted to see if there were any other factors I could’ve inherited to make sense of all my health complaints and like you I have found living first cousins very similar to me and it seems as though Autoimmune Diseases come from both sides of the gene pool!! It doesn’t change anything but it did let me give myself a little Grace as I’ve always kind of blamed myself for my issues, even though I rarely drank, have never smoked, haven’t indulged in (non prescribed) pharmaceuticals etc, ate healthily and exercised when I was able to.

Sorry for the War & Peace answer but I find it fascinating how many of us on here who have such similar stories and yet still any Doctor/Nurse I see always say they know very little about PA or they say something completely wrong about it which blows my mind every time, one Doctor even asked me to spell Megaloblastic Anaemia as he had never heard of it, he told me he was more of “head guy” I was in for a bleed on the brain that time but alas he still didn’t seem too clued up on that either!! My eldest Daughter is a Nurse and got the half day class with the Med students about Vitamins and Minerals but luckily having first hand experience with me she is correcting every Consultant/Physician/Nurse who comes out with some stupid, uneducated, false claim about B12, one at a time, some react just how we would imagine with indignation but there have been many who have come back to her and thanked her because they went away and looked it up (probably thinking she was wrong!) she’s fighting the good fight for us all and I am so, so proud!!

Best of luck to you, sending warmest wishes xx

[Mumof3boysLondon in reply to NisajuBlue]

Thank you so much for taking the time to share your story - and please don't apologise for the war and peace answer, it is so interesting and useful to hear the journeys of others. And I completely agree that until you have been completely exhausted you don't understand. I am sure there are others that are even more tired than I am but my new years resolution is to get my energy levels up as I'm fed up of telling my sons that I'm too tired to do basic things. This weekend was mostly spent in bed. It's actually a relief to know I am deficient as it's fixable. I feel like I am putting the pieces together and slowly gaining an understanding of my health and my body and what I need. I do think the DNA side of things is an interesting thing to look into as part of this, although appreciate it may feel a little scary and not for everyone. So glad your daughter is spreading the word about b12! X

[Sleepybunny]

Hi,

As far as I know I don't have ulcerative colitis or Crohn's. I've never had an endoscopy though.

I thought these links might be useful.

GUTS UK

gutscharity.org.uk/

I've heard they are very helpful when people contact them.

gutscharity.org.uk/contact-us/

Crohn's and Colitis UK

crohnsandcolitis.org.uk/

They have a helpline.

[Mumof3boysLondon in reply to Sleepybunny]

Amazing thank you, I will check those links out!

[Sleepybunny in reply to Mumof3boysLondon]

I think there is a community on Health Unlocked called Crohn's and Colitis Support.

There are other forum threads that mention Crohn's so might be worth searching for them.

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