Looking at treatment options

[raechel]

Hello.

I am a 23 year old female. My Crohn's disease became active after having my child that is now almost 5 years old. In the last 5 years I have never been in remission, although I have had periods where symptoms improved. I have been on Remicade, Entocort, Pentasa, 6Mp, Imuran, Humira, and antibitocs in the past, none of which I felt really helped. 6 months ago I had a foot of my small intestine removed. This made me feel much better for a few months, but still not 100% as I had mildly active crohns in several other places as well, including my stomach.

Now, here I am 6 months post surgery, having all too familar pains starting up again. Not much issue with number of BM's most days, although I have found I can't eat chicken, salad, green veggies, dairy, fruit, or small seeds...as long as I stick to these restrictions the sharp pains and overall aches are really my only complaint. A recent colonoscopy shows my disease has become moderatley active at the surgical site again already. I am currently on Cimzia and Prednisone 40mg. I am hoping to read others stories and find a medication I haven't tried yet that others have found successful, but I don't want anything too serious side effect wise as I'm not too desperate yet, just looking to nip this in the bud before I have to lose more intestines.(I am anemic, and steroids have lead to osteopenia as well).
Also, I want to know... does anyone else have off and on severe stomach 'bloating' (for lack of better way to describe it). It does not seem to corelate with gas, but does seem to happen before I 'explode' as I call it (a rough night of multiple loose BM's).My stomach will change so drastically I have people come up to me and rub my stomach asking when I'm due! My pant size can vary in a day from a 4 to a 10... and for kicks yesterday I measured my stomach when it was expanded it was 37 1/2 inches.... 5 minutes and a huge 'explosion' later, it was down to 33! The odd part is someimes it will come and go with out me ever even using the bathroom or having gas. Doctor acts like I'm crazy. Any ideas???
Considering clinical trial for AMG 827 as well...

Thanks for any help!
Raechel

 

[techgirl]

You're not alone...

I'm also a 23-year old female living with Crohn's. I've never been in remission since my diagnosis at age 19. Unsuccessful on Remicade so far, 6mp, poor reactions to prednisone in some cases. It's been suggested I have the surgery you mentioned and I'm afraid to because my disease would still be active in other organs. I think you're smart and brave to evaluate different treatment options (I truly wish I found one that worked that I could give you).

I've definitely noticed a difference when I get bloated but never thought to measure. Will have to see how drastic the change is but my size fluctuates like you wouldn't believe.

Basically, don't know that I can give you any guidance but you're not alone. I completely understand where you're coming from and the added struggles of being a young woman with her whole life ahead having to deal with this so young. I'm here. Take care.

 

[David]

Hi Raechel and welcome,

I'm sorry to hear your Crohns hasn't been in remission You poor thing, that must be really tough.

You may want to check out our treatment forum if you haven't already. I'd also suggest posting about the clinical trial you're pondering to see if others know anything about it.

I wish you all the best and hope a solution can be found for you soon!

 

[raechel]

Thanks

Thanks for the reply. It is good to talk to someone in such a similar situation as mine. You said your crohn's started at 19, was there an event thar seemed to activate it for you? (Having a baby was what happened for me, but I have heard others say that their illness seemed to start after they caught some kind of bug).
When you say your size fluctuates, do you experience the same as me where it will be normal, and then HUGE (looks like I'm 6mths preg.) then back to normal again? I would live to know if that happens to other ppl wuth crohns as well since the doctors act like it is not normal.
As far as the Remicade goes, I am sorry it is not working for you either. I think I spent too much time on it unsuccessfully before I tried other things, but then nothing else worked either so I guess it is all irrelavant. As far as reaction to the prednisone what was happening? I am noticing that I am very shaky off and on throughout the day and often find it harder to concentrate when I am shakey. It has only been happening since I started the prednisone, and my sugar levels are normal, so I question if it is a side effect.
In regards to surgery, I can symathize. I fought having surgery for awhile becasue like you I would still have active disease in the other organs, so I thought, what is the point? The only reason I finally went ahead with the surgery 6 months ago (very reluctantly I might add) was because the doctor said it had got to the point where that area was so restricted it was either schedule a surgery, or be brought in in the next month for an emergency surgury when I was completely blocked. I was still very unhappy about having the surgery because I had heard it often just comes back in the same spot anyways, and here I am 6 months later, with that same area 'moderately active ' again already. Basically, I guess what I'm saying is, I understand your not wanting to have surgery, and I myslef will never have another one until it gets to that same emergent state, becasue it obviously is a very temporary fix, and no where near a cure.
I live in Michigan, but did alot of research and found the Mayo Clinic in MN to have the leading doctors in Crohns disease before I had my surgery, and that is where I had the surgery performed. I am headed back there this week to see one of their doctors in hopes they have some new treatment my doctor around home just is not aware of. At very least, they have the most advanced testing equipment to evaluate the situation. Last time they were able to detect an abcess the size of a baseball surronding my illeum that every test available to me in MI missed, that could have killed me, so I am very confident in their abilities and hopeful for some answers.
Thanks again for your reply, it is nice to talk with someone about something no one else in my life can truly understand. Best of luck to you!

 

[xJillx]

Hi Raechel and welcome! I am so sorry you have yet to find an effective treatment option after 5 years! I am happy you found your way to the Mayo Clinic, though. From what I have read, they are the best in the country. Is that who you would go through for the AMG 827 trial? I have not heard of this one yet...I amoff to do some research!

I sure hope you can find the right treatment and soon. Hang in there!