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Crohns Battle

Hi Everyone!

I am new to this forum and I am excited to find a place where I can relate to people who are going through the same thing as me.

I was diagnosed with Crohns Disease about 7 years ago when I was 20. I had always had an upset stomach growing up but never knew the extend of what was really going on. When I was 20 years old my symptoms finally escalated to the point where I was in HORRIBLE pain and was throwing up very regularly. After a few trips to the ER I was diagnosed and found that I had almost a complete blockage in my small intestines.

After figuring out what was going on we then struggled with what the next step was that we were going to take. I ended up taking a quarter off at my college to figure things out. I had a drain put in so my symptoms were not so bad but it was only a band-aid until I would have surgery. I had surgery on Christmas Eve of all times to take out the blockage and could not believe how great I felt when I was done (no more pain!). After healing up from surgery I was started on Humira to put me into remission.

I feel like surgery was the easy part looking back at everything. I went through Humira, Cimzia, Remicade and Entyvio and have not found a treatment that has put me into remission. I have felt like I am the 1% for everything when it comes to drug reactions and I think I have been a mystery to my doctor as well. It has been extremely frustrating to go through so many treatments and have no results. I currently have many areas of inflammation, ulcerations and narrowing in my small intestines from a result of not finding a med that works.

My doctor is now looking at putting me on Leukine to see if that will work but, I feel like I am running out of options. I try to keep a positive attitude but there are some days where I cant help but get frustrated. I know something will end up working, its just a matter of time.

I look forward to reading exploring this site and if anyone has any questions feel free to ask!

Thanks!

Jenn
 
Hi Jenn!

So sorry to hear that you are in that "special" group of patients who don't respond to most meds. My doctors always say to me each time they try a new med "don't be special this time" like it's some sort of incantation that will work it's magic. I've often had some weird and severe reactions to the drugs they try and my response is less than adequate - I've had four surgeries to remove strictures in my small bowel and with 90cm of small intestine left have to consider seriously how to control the disease to prevent more bowel loss and avoid needing a transplant. Which is why we're planning to go ahead with a stem cell transplant. I know it's kind of a last resort thing but if you feel like you have run out of all options it is good to know it's there. I don't know if that would be something you would consider.

For me the last treatment my doctors had me try before progressing to SCT was anti-MAP antibiotic therapy so I'm just mentioning that as I didn't see it in your list! For me I just couldn't tolerate the antibiotics but I feel it was worth a try.

Good luck with leukine! Also have you ever tried Modulen or Elemental 028?
 
Sorry to hear what you've been through, it seems like you're keeping positive about it though. Best of luck with Leukine :)
 
Thank you 24601 and DJBHeat! I actually have not heard of any of those treatments so I will start looking into them now. I have also started thinking about looking into getting a second opinion from another doctor. I believe in my doctor and trust him but after going through so many treatments maybe having a fresh set of eyes look at me would help. Thanks again for all the suggestions!
 
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