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Crohn's Disease
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Posted 2/27/2009 4:33 PM (GMT 0)
So, I had my third Remicade infusion on Wednesday, at which time the doctor told me he didn't think it was going to work, and since I've exhausted all the Crohn's meds out there he doesn't think Methotrexate will work either. So, he suggested I try to get into a clinical trial or have an ileostomy (with perm bag). Of course I was totally shocked and cried the entire appointment --- couldn't get it together, then had to sit through my 2 hour remi appt with a curtain around me because I was crying so hard. That was the first time they mentioned surgery to me, by the way.

Anyway, the clinical trials he gave me to look at are the following:

Prochymal (ex vivo cultured adult human mesenchymal stem cells)
Ustekinumab Therapy
Vedolizumab (MLN0002)

I don't know anything about these and was wondering if anyone has heard of them, had success with them, had anything to share.
Thanks for your help.
Posted 2/27/2009 5:22 PM (GMT 0)
I also wanted to say that I have a beautiful three year old daughter and would really like to have another. Obviously trial drugs aren't high on my list of things to take.
Posted 2/27/2009 6:00 PM (GMT 0)
I don't know about any of these that you have listed but have you thought about trying either Sulfasalazine and/or Entocort EC? nancy

Posted 2/27/2009 6:09 PM (GMT 0)
Hi: Thanks for your reply. I'm allergic to the 5 ASA drugs (Asacol and Pentasa) which I believe is the active ingredient in Sulfasalizine ... I was actually hospitalized from them. And, I believe Entocort is the same as Budesonide which made me vomit after one pill. Believe me, I am trying to think of everything too....
Posted 2/27/2009 6:31 PM (GMT 0)

dietcoke--sorry you are having such a hard time sad    I know how difficult it can be dealing with this disease AND a small child!

I cannot help you with the trials you mentioned, but I can give you a suggestion regarding an ileo...check out the ostomy board.  There are MANY of us who have lived with Crohn's, have children AND live wonderful symptom free lives without medication.  If you check out some of flchurchlady's posts, she had crohn's colitis, too (mine included small bowel to rectum), and may have some good info for you.

I would definitely start with a second opinion...do you have access to a teaching hospital?  I am sorry I don't know your background and I could be asking silly questions...

Posted 2/27/2009 6:54 PM (GMT 0)
If pregancy is something you are thinking about soon, clinical trials are a bad idea. If you got pregnant that would preclude you from all clinical trials so you would be removed and lose access to the drug. You might even end up getting the placebo and not improve at all during the trial. And you don't have time to waste...you just need to get well so you can get pregnant. Get a second opinion, certainly...but given your age and strong desire to have children, I think you should consider the ostomy. Trials are not a good idea anyhow. They are experimental drugs, they may not work, and the side-effects to a fetus (and possibly your fertility) are unknown.

An ostomy should not affect pregnancy or fertility, and may dramatically improve your quality of life. I think that is your best choice. Talk to people on the ostomy board. Ask your doctor how long you would have to wait after the surgery in order to get pregnant. Best of luck with your decision.
Posted 2/27/2009 9:33 PM (GMT 0)
Honestly, I didn't think I'd have to have a bag... because my rectum just recently became affected, I think that's why I reacted so strongly. I have gone on the ostomy boards just to read stories, etc. and it does seem as though people seem much happier. I guess I need to decide if we are going to try for another child and that will help me make my decision. I am also looking into LDN to see if that's worth pursuing. Ugh!
Posted 2/27/2009 9:34 PM (GMT 0)
I forgot to mention that I live in the Boston area and go to Mass General now. I will definitely get a second opinion... not sure where yet. I guess I have to look into other good docs in my area.
Posted 2/27/2009 11:29 PM (GMT 0)
Good luck Kasper87. Why did you choose that study? Just curious.
Posted 2/28/2009 10:27 AM (GMT 0)
Have you looked into Cimzia? It's in the same family as Remicade and Humira. The best of luck to you. Blessings, Julie
Posted 3/1/2009 1:36 AM (GMT 0)
Hi I know how stressfull it can be at times when facing new challenges and hope you can get a plan going.. I couldn't stay on Imuran or Remicade and it was a difficult time for me. Do lots of research and maybe something will help you decide.. let us know how it goes..lol gail
Posted 3/1/2009 2:44 AM (GMT 0)
I think it's bad that the doctor was so negative with you. Why not tell you they hope it helps? If your doctor isn't positive, it really makes it hard to be positive yourself. I understand that you have to know your options, and know what to expect next if the current treatment doesn't help, but I think there's a good way, and a bad way to present information to a person. I really feel for you. My initial introduction with my surgeon left me like you were-all alone in a room crying. I actually hated him, and I didn't let him come back into my room until after surgery. (Now of course I LOVE my surgeon-he's great!) I wish only that someone could have sat and explained things to me better.

I hope those here who are closer to your situation can help you make the best decision for you! Maybe the Remicade will help, though, and you won't even have to make that decision!!!
Posted 3/1/2009 2:38 PM (GMT 0)
LDN is definately worth a try. It's the best thing that I've tried. Remi worked very well for me but I had a lot of sides from it. Good luck with whatever decision you make. I was thinking if LDN didn't do the trick of looking into the stem cell trial.

Take care,

Miss

Posted 3/1/2009 3:10 PM (GMT 0)
Please go into further explaination of your allergy to 5 asa drugs and Imuran. My son just got out of the hospital yesterday for an allergic reaction to mesallamines (5asa) We are not sure if he is also allergic to Imuran. What did the Imuran do to let you know that you were allergic. My son ran a fever, swollen feet and ankles and racing heart with a terrible cough. Thanks for any info
Posted 3/2/2009 2:56 PM (GMT 0)
Julie1014: They told me Cimzia wouldn't work because I didn't respond to Remicade and Humira. I don't know if that's true, but that's what they said.

catbird4077: When I was first diagnosed in 2000, they gave me Asacol and after 1-2 weeks I got really sick (very high fever, chills, 20-30 bms at least), they put me in the hospital for 7 days and we all thought it was just a flare (b/c I was so new to the disease). So, they gave me Asacol again again and I went home, and within 7 days, the same thing happened and I was back in the hospital for another 7 days. I had a super high heart rate too. We all agreed it was the Asacol. Later, as for 6mp, I literally took one pill, was up all night crying because my stomach hurt so bad. The next night I took a half pill and had the same reaction. I didn't try immuran b/c they told me that is the same drug basically.

I am looking to find different doctors in the Boston area, to get a second opinion, to meet with a colorectal surgeon and also meet with some holistic doctors. Yes, I'm totally pissed that the nurse practitioner told me this when I was looped up on benadryl, in the middle of remi infusion and still very hopeful. Also, my rectum was always fine until my last colonoscopy, and I really had no idea that if your rectum goes, then that means a bag. I didn't put the two together. I'm pissed and sad too.

My current doc wouldn't prescribe me LDN, but really now I have nothing to lose so I'll find one that will. I am due to start prednisone soon (yippee...can't wait), so will probably have to wait until that wears off a bit before I try.

Thanks everyone for your notes. I really appreciate it and still don't know what I'm going to do. But, things always have a way of figuring themselves out I guess.
Posted 3/3/2009 1:41 PM (GMT 0)
Hey Dietcoke,

If you want to email me privately, I would be glad to provide you with a variety
of options, doctors, etc. We live along Rt. 495 in the Concord, Carlisle, Acton area.

My wife has had Crohn's since 1971 and went through your situation around
the middle of 2005. She even cried at MGH (you are not alone). She has
since left MGH and that was a very difficult decision as she was a patient
there since 1971 (3 surgeries there). Looking back, it was one of
the best decisions she made. At the time, she was also facing the decision
of a permanent ileostomy (the only option!).

My daughter (age 11) was diagnosed with Crohn's on Nov. 12, 2008 and started
the SCD diet on Nov. 13. Never took any traditional medication. She has been
symptom free ever since. Blood and stool tests (we take them monthly)
show dramatic improvement. Of course, the doctor just doesn't believe it.

I did attend the LDN conference in 2008 and met some doctors that regularly
use LDN as well as many patients. My wife's doctor was open to LDN, anti-MAP
antibiotic therapy, etc. He may be worth a try for you.

Good luck and let me know via email if we can help.
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