Crohn's diagnosed in 1999 - out of options

[Chellybow]

Hello, I'm new to this forum and have never posted my story before. I was diagnosed in 1999, but had suffered 5 years prior to diagnosis. I have had 3 bowel resections and have been on all the meds, Pentasa, Asacol, entocort, Prednisone, Remicade, Humira, Cimzia, the list goes on and on. I have either had no relief from meds or have an allergic reaction to them. Last month my GI doc basically threw his hands up and told me he is out of ideas and options and no longer knows how to treat my disease and referred my to Baylor Medicine in downtown Houston. That doc wants to try Remicade again and I am awaiting insurance approval and have about a week to go before that starts. I am in a terrible flare and also suffer from fistulas. I have had 3 abscesses in the past two years. I am having so much pain and have 20 or more trips to the bathroom a day. I have been very strong through all of these years, but find myself weakening. If the Remicade doesn't work this time, the new doc wants to start me on a clinical trial in January.

I was hoping to find anyone who is going through a similar situation that can give me any advise or support. I'm starting to get a little scared now. It is very unnerving to have doctors tell you they just don't have a clue what to do!

 

[DustyKat]

Hi and :welcome:

I'm so sorry to hear of all you going through...:hug:

I'm not surprised you're scared when the doc does that! There are others here that have had the same issues you have and I'm sure they will be along to offer advice. In the meantime have you have a look through the Stem Cell Transplant thread? If not you will find it here...

http://www.crohnsforum.com/showthread.php?t=22259

Perhaps that may be an option for you?

Good luck hun and welcome aboard!

Dusty. xxx

 

[Crohn's 35]

Hi Chellybow :bigwave: Wow you are just like me!!! Nothing works! I dont have fistulas though. I was allergic to Remicade so my docs are in the same boat. They don't have Cimzia here so my options are even worse. The only thing that works somewhat are Cipro and flagyl, once my flares are gone I take one of each or every other day to keep it at bay. I can't imagine what kind of pain you are in. I don't know what to recommend for short term but like Dusty says stem cell transplant maybe an option. Keep us updated on you, as I am curious for one. Hope you get relief soon!

 

[David]

Welcome. I'm so sorry you've been having so much trouble, you poor thing

In addition to what Dusty said about the Stem Cells, you may want to look into elemental/enteral nutrition to see if it may improve your symptoms.

Again, welcome, we're here for you anytime you need us.

 

[bjeffrey]

Hi Chellybow...Welcome..

I feel for you cause I was there not too long ago.

I choose Humira. After 2-3 months, it finally started showing better results. The other meds did not work for me anymore either.

I was on Cipro and Flagyl and developed the neuropathy, so I stopped.

Changing my diet helped me immensely. I don't expect that drugs alone will alleviate my symptoms of Crohns.

check out the feedback from others at http://www.askapatient.com/rateyourmedicine.asp

and the diet 'some' people with crohns have had success with http://www.breakingtheviciouscycle.info/

If i can help let me know.
jeffrey

 

[Jessi]

Hi Chelly, and welcome to the family. Remember that you're not alone. :hug:

The first things I thought of while reading your post, was stem cell transplant, like Dusty said, and elemental nutrition, like David said. Jeffrey has some good advice about diet, too. The diet mentioned (SCD) may be a popular one, but one that works better for some is the GAPS diet. Or some follow the Paleo diet. You can easily google either one of them. Everyone is different, though.

I'm crossing my fingers that the Remicade works for you this time around. If so, you'll be rid of those fistulas in no time. Hang in there.

 

[Lydia]

Another thing to check out is the LDN forum.

 

[rob101]

Have a look for a book called inflammatory bowel disease by professor John Hunter ,should be able to get it on Amazon ,he reccomends using the elemental diet followed by the lofflex diet (Low fat low fibre diet) .Touch wood seems to be working for me so far, along with the azathoroprine. Hope that you find something that works .

 

[Guest9283]

I had all those symtoms you mentioned. Including the doc who said "I've run over 100 tests this time, I've tried everything, and I'm sorry - I just don't know what else to do for you"...

After my stem cell transplant, I no longer had symptoms, nor a doc who believes he can run out of options anymore. Feel free to PM me and I'll set you up with an appointment. We all know what you are going through and im sorry to hear about your tough situation. Oh btw, don't expect most GI's to agree with a decision to do sct's...only those that have seen it work. These new transplants (allogeniec) hold LOTS of promise. I hope your condition improves one way or another. God bless!

 

[Mollyp]

Hi. I understand your grief. I, too, have tried everything. I developed severe allergic reactions to remicade and humira. My neck got real red after humira and then it pealed just like a sunburn. Entecort worked for me for about 3 years and then stopped working. I keep going back to prednisone which isn't helping much either. I've had 2 bowel resections with and abcess inbetween. Then a hernia repair. I wish I had advice for you, but I'm looking for advice myself. My GI Doctor keeps sending me to the Cleveland Clinic but they throw thier arms up too. I'm about to check this stem cell site.

 

[Alisa]

Have you tried anything non prescription? I got to the point that it felt like the drug companies were ruling my life and it wasn't a good feeling. Trying things like vitamins, changing your diet or anything like that?