In need of Help!

[TeenageStephanie]

Hi everyone, my name is Stephanie and I am new to Crohn's Forum.

I was diagnosed with Crohn's December 23rd 2011. So it is a very recent diagnosis. I am under the care of a pediatric GI specialist at McMaster Hospital. Although my diagnosis is new I have been through everything under the sun.

At the start I was admitted to the hospital in January and then I had an MRE. After being there for five days I was discharged while on Prednisone.

Then in February I had a upper and lower scope done. They didn't see anything new just a unhappy large intestine. Then later on in February I was admitted for 12 days because when I would go to the washroom it was all blood and nothing else. I was very close to having surgery. Eventually the steroids kicked in and I was discharged. They also put me on Remicade during that stay.

Then I had a good March. Then April came and I was admitted again this time for 14 days, I was put in Imuran in March but then it made me waaaaaaay to nauseous so I stopped it. Then while at the hospital in April/May I was started on Amitriptyline (sorry probably the wrong spelling), to try and control my nauseousness. But eventually I stopped it because it did not work and then it also made me too sleepy.

So then in June I was iffy, I went to school but I didn't feel all to good. Then July came. Once more I took another trip to McMaster hospital. I stayed for four days, with no success.

Somewhere in July and August a Remicade anti-body test was done. I do NOT have anti bodies to the Remicade but I still am not responding. Therefore my doctor believes that even if he tries to put me on another biologic I still will not respond.

So now it is August and I have been in a flare since May. I have been bleeding since beginning of July, I have been beyond nauseous ever since being diagnosed. Odanzatron and gravol combined don't do anything at all! Any suggestions PLEASE HELP!

Also I was just put on 6 MP for two weeks. If i still do not feel good in two weeks then they are going to consider medication a failure and start talking about the idea of surgery. If it comes to that my mom wants a second opinion. But I'm ready for surrgery if that will make me better. Any ideas how to handle this? I'd really love to hear what anyone has to say!

 

[Jennifer]

Hi and welcome to the forum!

I'm not sure if 2 weeks on 6MP is long enough for it to really do any good (there's a blood test they can do to check and see if the 6MP is in therapeutic levels). Sounds more like they just expect it to not work and are really just leaning towards surgery. I'm more surprised that they aren't trying mass combinations with meds rather than one or two at a time. Before my resection I was on 6MP, Asacol, Entocort and Prednisone (all on the highest doses my body could handle) for almost a year before they decided that surgery was the answer. This was 13 years ago though and times have changed so maybe they can tell better now days if medication is going to work at all.

That's a long time to be losing blood though and if Remicade didn't work then perhaps surgery might be the best option. I was 17 when I had my resection so its not out of the ordinary to have surgery so young if not younger.

Do you know where and how much of your bowel is being affected? Mine was mainly in the terminal ileum with a little in the large intestine so I had 8 inches removed (no short bowel and no bag afterward). The resection itself kick started remission for me and I continued taking 6MP after the surgery to stay in remission (been 13 years now) although I recently switched from 6MP to Humira. Not everyone has great success after surgery but many do and many have been in remission longer than me. So far I'm glad that you're open to the option and if meds really aren't doing the trick then it may very well be your only option at this point.

There's nothing wrong with getting a second opinion but keep in mind that it will prolong your symptoms because it takes time to find a GI, get an appointment with them, then go through more testing and then possibly try new meds which may or may not help leaving surgery as a possibility still.

Good luck and keep us posted!

 

[TeenageStephanie]

My Crohns is my entire large intestine. I've been on alot of drugs so far I have been on: Prednisone (for 6 months straight), Remicade, 6 ASA, multiple antibiotics, currently 6 MP, immurain, ammitripalin, donperidone, odanzatron, gravol, Tylenol, benedryl, Pantalock, different ennemas and suppositories.

What would a surgery for me entail? What are other peoples experiences with surgeries? What kind have you had? Does anyone know what kind I would be looking at?

 

[David]

Hi there Stephanie and welcome to the community!

I'm so sorry to hear you're not responding to treatments and flaring. You poor thing

*hugs*

My suggestion - You and your mom should research enteral nutrition and low dose naltrexone. Both are VERY exciting treatment options for Crohn's disease and have very little side effects. If you utilized both, I think there's a decent chance you'd have a good response.

Oh, and if they haven't tested you for c.diff lately, I would request that they do so just to make sure that's not the primary problem.

We're happy to help in any way we can.

 

[TeenageStephanie]

Thanks for all the info. We are waiting to hear back from the doctor this afternoon to see what he thinks the next steps should be. I may have only been on thee 6 MP for a few days but it made my nausea so much worse. So I have stopped it. As of today the doctor declares medication a failure. So we now need to figure out which way I need to go. It will most likely lead down the path of surgery.