Feeling overwhelmed

I was originally diagnosed in 1983 at the age of 16 with u/c. In 1994 I had my large intestine removed and had a temp bag. The first day home from the hospital my small intestine kinked and ended up in the er and had to have more surgery to "tack "it up. I thought things were done and I was ok then reality hit and I was having leakage problems overnight and went to a gastro doc and was told sorry no you have crohns not Uc. The Dr tried imuran but I got pancreatitis and was in the hospital for a few days now I use remicade and am doing ok except lately I am getting a lot of joint pain and need B-12 shots and iron. I am feeling frustrated but I am trying to stay positive. Any suggestions?

Hi ddevanie
Welcome to the forum.
Sorry to hear of your problems ---it can be a very frustrating experience especially with your background.
It is good that the remicade is helping and there is a remicade sub forum that you might like to take a look at, there might be some helpful information there from others who are on remicade.
Perhaps you might benefit from a visit to a rheumatologist to help with the joint pain.
Feel better soon
Hugs and best wishes
Trysha

Hello and welcome to the forum

Out of interest have you had your vit D levels checked at all? If so and the levels are good then I would agree that perhaps a referral to a Rheumy is needed to look into the joint pain. Also have you mentioned this to your GI? There is a chance that the Remi could now be causing this so it definetly needs to be checked out. Crohns wise would you say the tum is nice and settled at the moment?

AB
xx

Greetings and welcome

I'm sorry to hear you're having joint pain now. That's really frustrating I agree with Angrybird above that having your vitamin D levels tested if you haven't would be a good idea.

Vitamin D was low so now I am on caltrate twice a day and iron twice a day a B-12 shots monthly but joint pain not as bad and belly doing pretty good. Thanks for the support it really helps even though my husband is great he really doesn't understand what it's like to have so much going on .

Keep positive thoughts and always stay vigilant. Your vitamin levels could be off at any time even with supplementation, always listen to your body you know best! Spouses are great they try but at the end of the day its no substitution to speaking with another person who knows. I would ask your doctor about glucosamine it does work in some people to give you a little bit of mobility back.

I'm glad you're doing a bit better

We're here for you anytime you need us!

I had surgery last year to have 3 ft of my small intestine removed, I was still having some stomach pain, so I started Remicade and haven't had any pain at all in my stomach. I do have some in my hands and feet though. I was recently put on Lyrica, and my pain has gotten better. I have been told I have fibromyalgia with the crohns, along with arthritis.

mkennemore,

With three feet of your small intestine removed, have they ever tested your vitamin B12 level?

Yes, all my levels come back normal. Vitamin D goes down sometimes, but not much. I take supplements now and have no issue.