New Here

[Matron Nell]

Hi, I'm new here and thought I should introduce myself. I have had Crohns for 43 years now and been diagnosed for 40 of them. Undergone 2 operations to remove all of my large intestine along with my rectum and anus. (1974 and 1982)Since then kept reasonably well until my 40's when all sorts of 'related' problems arose, from Arthritis to skin eruptions, lumps in my groin and in my armpits, frequent infections and deteriorating sight. Since then I have had my gall bladder removed, a peristomal hernia repair (didn't work), and my stoma moved from my right side to the left in 2011, I am still having problems with pain from the stoma sight and blockages cos of the narrowness of the opening although have a dilator.
Found this sight after a search trying to confirm the awful neuralgia in my head, neck, and now shoulders is a Crohns complication. My doctors have told me it isn't and I have been treated, like some of you, for sinus infection, ear infection, migraine (I already suffer and know it isn't this) and anything else they can think off. No painkillers worked and I have been in agony for long periods of time since last September when it all started. I now know that it is connected and am going to present my doctor with the evidence I have found here. Thank you for helping a long term sufferer get some hope.
I should also mention that apart from the above, I have a stone wedged in my right kidney (no action), severe depression, and an aortic aneurysm which may need surgery if it grows much bigger.
I like to be called Nell the Matron bit is a private thing between my disabled partner and myself, I am and have never been a medical Matron in the sense that we all know!

 

[Angrybird]

Hello and welcome to the forum. I am sorry to hear about the ongoing problems that you are having. I will certainly be keeping fingers crossed that the information you have found here helps when going to see your doc, if you don't mind please keep us updated on how you get on.

All the best

AB
xx

 

[KazT17]

Hi Nell, I have had my colon removed and recently a proctectomy. I also suffer with terrible migraine/ jaw pain/ sinus pain. Can you let me know where you found evidence that this is crohns related please?

Sorry you are having such a rough time. It is relentless this disease. I hope you get some relief very soon.

Kaz xxx

 

[Astra]

Hiya Nell
and welcome

Glad you found us, lots of Crohnie friends here for you.
My doc/gastro always reckons head pain isn't Crohn's related but I'm convinced it is. I've suffered with migraines and occipital neuralgia too. At the moment it's behaving!
I've spent a lot of money, chiropractors and osteopaths, accupuncture etc, then I saw a neurologist.
Doc gave me 25mg Amitriptyline last year and it's been my miracle med! Head pain and migraine have gone, for now!
Hope you find some relief
Lotsa luv
Joan xxx

 

[David]

Hey there and welcome. I'm glad you joined but am sorry to hear of all your troubles

Can you please describe your neuralgia in more detail?

And are you on any vitamin and mineral supplements? Do they check you for deficiencies?

I wish you all the best.

 

[Clash]

Welcome to the forum, it is a great source of support and information!

I would also be interested in where you found the neuralgia thread as I ended up in ER last year in severe pain and the ER doc diagnosed this as a nerualgia related to infected tooth, it was on the opposite side of of bad tooth and dentist said infection, nerve damage and the like didn't seem responsible and he doubted the neuralgia diagnosis. All I know is know amount of lorcet, percocet, and two shots of dilauded affected this pain. The ER doc eventually game me neurontin and the pain subsided. I am still experiencing GI issues, for the past two years, and going through testing as we speak.

 

[carrollco]

I had severe pain all through my body. I could hardly get up from a chair or out of a car without serious pain. Every joint hurt and I had stabbing pains in my bones. They ran a vitamin panel and I was low on Vitamin D, hardly any B12, and my magnesium and calcium were negligible. I am now on heavy doses (sublinqual) and most, but not all, of my pain is gone. Doc says I have Crohn's arthritis that comes and goes, but those stabbing bone pains are gone. I'd ask your doc to do a vitamin panel ASAP.