New to the Forum

[kg0603]

Hi to All! I'm new to the forum. I'm a 30 year old female. I was diagnosed with Ulcerative Colitis at 13 and then at 22 they diagnosed me with Crohn's. At the age of 18, I landed myself in the hospital a month before I was to leave for college. I ended up having my large bowel removed and a illestomy was created. Lucky for me, I had two more major surgeries within the following two years. The last surgery reversed the iloestomy. I did lead a normal life till I got married in 2000. Starting the day after we got married, I had severe cramps and didn't know what was wrong. I couldn't go to the bathroom and I thought I could pass out at any time. It was the worst pain I had ever felt. The following day I was able to go to the bathroom and the pain disappeared. While on our honeymoon this happened again. When we returned I called my doctor to tell him what was going on. They had in me and did a couple of test. Turns out I had a bowel blockage. After that, I had these large lumps on my shins. I couldn't walk. Turns out that it is called Erythemanodosum. A skin infection caused by Crohn's Disease. Once that cleared up, I ended up getting a fistula. And that is when they said I had Crohn's Disease. Supposely you can 't get these if you have Ulcerative Colitis.

It's been a struggle these past couple of years. But, all and all I can say that my Crohn's is not nearly as bad as some of the people I have talked to. I am currently taking Imuran and getting Remicade treatments. Although the Remicade treatments were not a normal thing until last year. I was able to go almost every two years without getting the treatments. But, the bowel blockages became more frequent and nothing would control the inflammation. I've been getting Remicade treatments every 8 weeks, for the past year (i think).

I have been doing good Crohn's wise but, I have had 5 sinus infections in the last year. Which I believe is because of the Remicade. Which leads me to a question, for those of you that have had Remicade as a maintenance drug, have you had any side effects that you can't explain? Not only have I had these sinus infections but, I feel tired, confused and disorganized, my legs ache all the time. I have never experienced any of this until I started getting the treatments more often. Any input anyone could give me would be great!

 

[Shane]

Hi, welcome to the forum.

I've been on Remicade since November. The only side effects I've noticed to date are fatigue for a couple of days after infusion and itchy skin which comes and goes. Still early days for me though.

Good luck.

Shane

 

[Kev]

Hi kg0603 Welcome to the forum in particular, and the IBD community in general. I may be in the same boat as you. I think your UC diagnosis was a bit premature. It can happen... early symptoms can be indeterminate. At least now you know exactly what you are dealing with. My diagnosis is still indeterminate, it could be UC, or CC, or CD. Treatment wise, it doesn't make all that big a difference. Just it would be nice (I guess) to know one way or other.

anyway, I'm not on Remicade (as yet). But my understanding is that with any of the immuno suppressant therapy, secondary infections or illnesses are common
Has anyone suggested wearing a surgical mask, avoiding crowds, germs, etc.?
Think between the 1 2 combo of Imuran (been there) and Remicade, the sinus thing is to be expected, and the other issues are typical side effects of one or the other. Not to overlook the other aspects of the disease in and of itself, OK

Anyway, have a look around, jump in with any questions, comments or posts.

 

[butt-eze]

I agree with Kev. Simply put: you are immunosuppressed. This means you will be less likely to fight off common "bugs". I almost always have to take antibiotics just to fight off a cold.
As for the achy legs. This can be a side effect to crohn's itself. I have had problems with sore joints thanks to crohn's.
When I was first placed on immunosuppressents my doctor made a point of telling me to be careful around crowds. I should wash my hands frequently, not touch my eyes or even pick my nose. If you are in a high exposure job you may want to consider something with less public contact.

 

[kg0603]

I realize that I am immunosuppressed. I have been on Imuran for a about 9 years. I have never gotten this sick. I would maybe get a cold once or twice a year. It has just been this last year that I started with the sinus infections. I work for a hospital but, I don't work with the public. I use hand sanitizer all the time. If someone around me is sick, I try to stay away from them and Clorox things around me (or things they might have touched). I feel that I'm taking all the precautions to keep myself heathly.

I was just curious if others had similiar problems while taking Remicade. When I got this last sinus infection, I was to get a treatment 3 days later. I called the GI office and talked to the Remicade nurse and she told me that she had just talked to another patient that seems to also have a chronic sinus infection. It has gotten to the point that I really want my doctor to try something else because I can't handle having these sinus infections. I don't want to sound like I'm complaining but, it just wipes me out.

 

[Kev]

Thing of it is, you recognize that these are 'infections'... not likely a direct effect of the drug. You are immune suppressed, and these are secondary infections you're prone to due to this. The other thing is, esp. in your workplace setting, contact is not the end all, be all, in exposure. Airborne germs are a VERY real possibility too. And, a hospital, clinic or doctors office are not the best places for someone, anyone, who is immuno suppressed. And the bugs just keep getting worse... 9 years on imuran is a long time, and I don't know if anyone has done any studies on the effects of such long term usuage of that type of medication.