My story

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Feb 2, 2012
Messages
13
Hi, I am new to this forum and just wanted to share my story, which from what I've read so far is similar to others.
Diagnosed when I was approx 18 (1988)
First surgery in 2005 - 30cm of small intestine and appendix removed. Relief for about 9 months until it returned at joins. Relief during my 2 pregnancies. Other than that a daily struggle with the disease,with good and bad and then very bad days.
Tried a variety of drugs, prednisolone, cortisone steroids- mainly for flare ups. Immuno suppressant drugs - cant remember all the names. Hate pred drug and refuse to ever have it again. Got lump on back,cushiins syndrome and face swelled up. :( Had humira fortnightly for 2 years, now swapped to infliximab infusions every 8 weeks, and methotrexate everyfriday. Use Imodium just about every day. Methotrexate has now affected my liver and losing hair rapidly. Reducing dose of this now. Awaiting stelara trial ethics approval, in approx 6 weeks. Vit b injections 3 monthly. Iron infusions, next one on tuesday :) so should feel good after that. So here's looking at yet another guinea pig experiment,and hoping this is the one.
Petina
 
Welcome to the forum, Petina. Sounds like you've really been through the wringer. I don't have all the answers for you, but I hope you find this place as welcoming, helpful, and understanding as I have. Sometimes, I miss the simplicity of a "normal" doctor's visit where simple problems get a simple answer and you simply get better. The "try this" and "see if this works" with IBD can certainly be frustrating. I hope you find some treatment that helps you feel better and less like a guinea pig. :voodoo:
 
Hi Petina and welcome.
You look like you are working your ways through all the treatment options. There are members on here who are in similar situations so hopefully you can get some new ideas/ information.
 
Hello Petina and welcome to the forum :bigwave: I am sorry the 'usual' meds have not worked for you and that you are on the waiting game of the unknown. I hope you get approval and that it gets you better, please keep us updated on how things go. Even if you just need to vent we are always here :hug:
 
Hi Petina and welcome :) I remember reading a trial about Stelara for Crohn's Disease not too long ago and the results were pretty good. So I pray that it works well for you. Please keep us updated with your progress on that :)

I saw you were on B12 injections, that's great. Please note that the University of Maryland Medical Center has information that states taking just one of the B vitamins can cause an imbalance in the others so you may want to look into taking a quality B complex vitamin as well. Have they checked your vitamin D levels?

I wish you all the best!
 
Thanks everyone for the kind welcome and thoughts. Not sure if I have an imbalance in vit d, but get regular blood tests so will ask about that. Will update you with stelara trial results down the track. Half the participants will get a placebo, so will be interesting. trying to avoid surgery again but rapidly running out of options. But have found the forum so far great to read about other peoples experiences and similarities.
 

Latest posts

Back
Top