My Story

[skibaboo]

Hi, nice to meet everyone.

I was diagnosed with Crohns in 1983 aged 12. I'm now 40. Oh lovely crohns. Fistulas, fissures, blockages, vomitting faeces, pooping, pooping, more pooping, severe weight loss, steroids, steroids and more steroids

My first surgery was 1987, resection of small intestine. Never really had much good health in the following years. Crohns flares in the small intestine, colon and rectum. Minor surgery each month to stretch my anus and rectum for 3 years until in 1997 it was decided enough was enough. Had my proctocolectomy and ileostomy April 1997. First time in my adult life I felt good. Had 5 years of great health then it returned. Had to have the diseased bowel removed and my ileostomy revised. Fingers crossed since then i've been in remission. I take azathioprine 50mg a day, B12 shot every 12 weeks and a ton of vitamins and minerals.

Struggling a bit now with GERD and anxiety/panic/depression. I started my own support forum and chat for anxiety/mental health support and one of my members has crohns and she pointed me in the direction of here, I joined but never got around to posting, she reminded me I should post so here I am

Nice to meet eveyone

 

[Mary:)]

Hi Skib....

I think I know you .....so glad you joined!!!

xoxoxoxoxo

 

[skibaboo]

Well hello there miss Mary xoxo

 

[Angrybird]

Hello and welcome to the forum, I am glad you have decided to join. You certainly have you fair share of experience with this disease! Do have a good nosy around as there is plenty of info here but also lots of support from a truly wonderful group of people.

AB
xx

 

[David]

Hi skibaboo and welcome to the forum

The first thing that jumps out at me is that your B12 injections are every 3 months. When was the last time you had your vitamin B12 levels tested and what were they? For people with Crohn's Disease who are deficient, especially with terminal ileum resection, every 3 months is often not enough to ward off the symptoms of deficiency and I want to make sure your levels are high enough.

What other vitamins and minerals do you take? Supplements as related to IBD are a bit of a passion of mine

Again, welcome! I wish you all the best.

 

[CLynn]

Hi Skib! Ah, the 80's, huh? Me too, but 1988 was my year. And I was 22. Welcome to the forum!

 

[skibaboo]

Thank you for the great welcome

David, I honestly have no idea. In the UK they don't show you your test results only advise if something isn't right. I have blood taken every 12 weeks to monitor my liver and kidneys and they don't routinely check for B12. I saw my gastroenterologist for my annual check up in august of last year, my blood was the best it has been for a long time, they were really happy. That's all that I know.

The vitamins and minerals I take.. umm scratches head lol sorry been a long day

Multibionta. It's a multivitamin with added probiotics, was recommended to me by my gastro doc when I had some IBS issues, no problems since, I've taken it for 5 years now
Aloe vera gel
calcium with magnesium
Vitamin D
Evening Primrose Oil
Starflower Oil
Flaxseed Oil
Potassium
Folic Acid
Omega 3 for vegetarians (Even though I'm not a vegetarian) it has some added extras

 

[David]

Hi Skib,

I'd request that your B12 levels be tested and demand the actual numbers. Two things:

1. As mentioned, 3 months is definitely a long time and I'm worried you're deficient.
2. Symptoms of B12 deficiency can include depression and anxiety. Please take no offense to me saying that, I just want to make sure that's not where yours is coming from. And hey, if it is, it's an easy fix. We've had people come in here on antidepressants, figure out they were deficient in B12, and the next thing you know, they're off the drugs.

*hugs*

 

[skibaboo]

No offense taken at all David. I've had the anxiety issues for many years, there's a lot more to it than the crohns. Stuff has happened to cause it BUT it also happened around the time of my ileostomy and after. Never had any anxiety or depression or panic or anything before my op, so there could be something in that.

I Have a lot of symptoms that could be seen as related to B12 deficiency. Neurological symptoms as well as the anxiety, tingling limbs, twitching, numbness, burning skin (major one that) My doctor did test my B12 when it all started but said it was fine and my symptoms are stress/anxiety. I do have a lot of stress, my mum is paralysed after a stroke in 2009 and I am her full time carer so I accepted that stress was causing my symptoms. I will mention the B12 again when I see my doctor though because it does make a lot of sense.

Thanks

 

[Mary:)]

I havent had my B-12 taken for a long time...I remember the last time I did it was in the normal range but my neurologist thought it was low. I guess the "normal" range was not good enough for him.....


OMG wouldnt that be cool if Vitamins could save the WORLD!! :ywow:

 

[David]

Whoa whoa whoa. If you have all those symptoms skib, you DEFINITELY need to get your actual B12 levels. As in get an appointment this week or early next week. Those are symptoms of peripheral neuropathy (b12 deficiency causes this) which is serious. One of the problems with the serum B12 test is that you can be "low normal" and the doctor will tell you that you're fine. But your methylmalonic acid and homocysteine levels can be elevated at that those "low normal" levels and damage is being done. If I'm right, your bank account is overdrawn and those injections every 3 months aren't taking your balance above zero.

Mary, your neurologist understands that "low normal" can lead to nerve damage and other issues. Good for him/her.