• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

About me

A

Arvy

Hi everyone, very glad to have found this site.
I was diagnosed with Crohns late 2011 at the age of 42 after suffering from loose bowel movements and extreme weight loss over a peried of 1 year.
Ignored my symptoms for a long time, refusing to believe i had a problem,
(Stupid man).
Had all the tests, colonoscopy, mri etc. Found out i had several strictures throughout my small intestine, longest stricture in the distal ileum and majority of changes in the mid-distal ileam.
Went from 12 stone down to 8.5 stone within a year !.
I never suffered from any pain untill fairly recently, Boo.
Have been on Budesonide since to relieve the inflamation and have been through Pentasa, azathioprine with no results. Am currently 8 weeks into a coarse of oral Methotrexate tablets, still to early to say its working.

I'm sure the key to solving this is more through diet and lifestyle changes than to throw dozens of tablets down my throat each week considering all the possible side effects of this medication.
I'm at the begining of this journey and a complete newbie so its wonderfull to have found this site with so much info and people with similar stories.
There is a certain comfort in knowing your not alone.
The NHS service i recieved so far has been excellent, can't fault it.

Trying to avoid surgery for as long as possible but it will happen eventually.
Best wishes to all of you, stay strong and never trust a fart !. :wink:
 
KWalker

KWalker

Moderator
Hello and welcome to the forum! I'm glad you've found this forum. You are definitely not alone with this disease so if you have any questions at all, you are guaranteed to get a lot of people with similar experiences. Unfortunately though with crohns, we're kind of like snow flakes in the sense that everybody is different. It would be amazing if we could all take the same treatment path and all have success but unfortunately what works for one often does work for some others. With that being said, if something doesn't work it is reassuring to know there are other options.

Some of the medicine does have scary side effects, but there are many people who take them and only few have serious problems with them on here, but for some the benefits are worth it. The best thing to do is just trust your body and if you don't feel one treatment plan isn't working, don't hesitate to mention it to your doctor and try the next option.

I'm glad to hear you have a good medical team you like and I hope to see you around the forum!
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Just to confirm with regards to the strictures that were found is this down to just inflammation or scar tissue as well? Are you still on the Pentesa and the Aza or is is just now the Mtx? Are you also on folic acid with this? Have you been advised on anything with regards to the diet side of things? We do have a diet and sups sub forum that is worth having a look at if you are interested in this side of things: http://www.crohnsforum.com/forumdisplay.php?f=17.

AB
xx
 
A

Arvy

Hi Angrybird,

The strictures are from scaring, just taking methotrexate 15mg weekly and 6mg budesonide each day, trying to reduce and stay of steroids. Folic acid day after Metho. Weekly bloods, high CRP. Daily calcichew vit D.

Have a good diet, chew my food well, dont often have gut pain, dont use any painkillers but i do get a lot of joint pain and tire very easily.
Low fiber diet, juice, blend, keep away from all the Bad foods.
Stick with white foods, fish, potatoes, rice, bread.
Stop smoking, health supplements, shitaki mushrooms etc, Exersise,
These are all recent changes, have to adapt to this disease if i like it or not.

I love spicy food, sweets, chocys, all that but what to do ?.
I never really drank alcohol so dont miss that.
Complications with foriegn travel is biggest annoyance. especially Asia etc.
That really P____es me of !!!. increased insurance costs, health worries. aaarrgg !!

Accepting the disease and the changes is hard to do.

Best wishes, Arvy.
 
David

David

Co-Founder
Location
Naples, Florida
Hi Arvy and welcome to the community :)

With that much damage in the small intestine and a high CRP, I'm guessing you're deficient in magnesium. I say that because it is primarily absorbed in the terminal ileum (distal small intestine), people with Crohn's are commonly deficient, and it has been correlated with increased CRP. I'd suggest discussing supplementation with your doctor as magnesium is an incredibly important mineral involved it over 300 metabolic reactions.

While you're at it, ask them to test your vitamin B12 level if they haven't.

All my best to you.
 
A

Arvy

Thanks for the advice David,
seeing my consultant soon and will mention the maggnesium.
I already get B12 injections every 3 months, forgot to mention that.
I do take multivitamins which contain maggnesium, plus omega 3 oil.

Consultant says because there are 7 to 8 infected areas the longest being 5 cm the rest around 1 - 2 cm. There are quite large gaps inbetween of healthy gut, fairly scattered.
She thinks better to control with meds than operate.
I would like to know what others think. to operate, or not to operate?
I dont often get gut pain but lots of diarrhoea and can't put weight on.

Think 1 resection and several strictoplasy.

Cheers mate.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
My experience is that meds just cannot do much long term if you have scarring causing a narrowing of the bowel, at some point an op is going to be needed to remove it. It certainly looks to me that you are doing all you can to ease symptoms so if you are still having problems that at least a referral and discussion with a surgeon to see what they think is required in my opinion.
 
David

David

Co-Founder
Location
Naples, Florida
Hi Arvy,

When was the last time you had your B12 level tested and what was it? I ask because an injection every 3 months is at the far end of the curve and might not be enough. We want to make sure you aren't deficient.

As for magnesium, that multivitamin likely isn't enough. It probably contains only 50-100mg and as this paper showcases, if you are indeed deficient in magnesium, you'd like need upwards of 600mg per day, possibly more due to your unique situation.
 
A

Arvy

Hey guys, will take the advice and ask my GI about a referal to a surgeon to discuss options and will ask what my B12 levels are to. Will also ask about prescription for maggnesium supplements.
Thanks David, Angrybird.
 
You must log in or register to reply here.
Top