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Posted 3/2/2010 7:45 PM (GMT 0)
Debilitated - I too have been on every single approved Crohn's med as well as done a few trials. MTX is my last hope (cimzia is doing nothing as my sed rate is still 78 after a year on Cimzia... Aside from my high sed rate, my symptoms show it's not helping. My doc doesn't want to take me off of it *just in case* it's keeping me from the hospital. I did the Prochymal study a couple years go and was *very* sad when they stopped the trial. It was the only thing that helped.)

So, MTX is sort of my last hope before doing a temp ostomy for a few years until some new treatment comes out. I am terrified of the ostomy, but I also keep in mind what Brian84 said... Maybe the ostomy would help me live a normal life while I wait for a new med. If you do end up getting the cut, maybe it will tide you over until something new comes out. I also bled out - last half my blood they told me in ER.

In any case, I'm on week 6 of mtx and, knock on wood, I'm still hoping that it will save me from the ostomy. I think it might be starting to help a little bit. I haven't had a temp in a few days. (Before I was up to 100 - 101 each night) And my pain just *might* be decreasing slightly. So, hold hope. I will hold hope for you too! Maybe mtx will be the one that helps.
Posted 3/2/2010 8:22 PM (GMT 0)
Thanks for those kind words... Does it really take that many weeks?
Posted 3/2/2010 8:30 PM (GMT 0)
Seeing that you have been on every meds I understand a little more.  I also have been on every type of drug available.  I am currently on Remicade and I don't feel it is working, although my Dr. disagrees.  I have had adverse reactions to every drug out there.  If Remicade fails, he will switch me to Humira, which I don't won't.  I also know that eventually that won't work either.  What makes this really bad is that I have a mild case.  If all drugs fail, I don't know what will happen because phsically I am probably not qualified for surgery but that may be the only option, and that scares me big time.

 

As I said though, just keep your chin up.  It is a bad situation, but there are a lot of people in this world worse off.  We at least will survive this.

Posted 3/2/2010 9:38 PM (GMT 0)
Yep, mtx takes a while to kick in, just like AZA and 6-MP. My old GI had me on it but took me off after 4 weeks, which I am learning was way too soon to call a failure to respond. My current GI says 6-12 weeks. For some reason I just feel like this one's going to help. All the other immune modulators caused an adverse reaction by 6 weeks. And, I think mtx is has a pretty high response rate when the body tolerates it.

Another thought - there is another immune modulator (two actually) out there which are rarely used: Thalidomide and Cyclosporine. They're pretty hard core meds, but just to put another thought out there for you. Even when it feels like we've exhausted all meds, there may still be paths to travel. Also LDN and the parasite theory...
Posted 3/2/2010 9:43 PM (GMT 0)
sr it took about six months on it for my sed rate to go from 83 to 35.
Posted 3/2/2010 10:03 PM (GMT 0)
Wow! Thanks Navy for sharing that. Makes me remember to keep at it... Patience is a virtue, right?
Posted 3/2/2010 10:12 PM (GMT 0)
It is a turtle metaphor that is for darn sure.
Posted 3/3/2010 5:46 AM (GMT 0)
Hi debilitatated, I have had crohns for 31 years I have had surgery 3 times. Bowell resections. And a couple surgeries for a couple anal fistlas. yuck. The very first surgery was when I was 17 I had already had the disease for 1 to almost 2 years. No doctor knew what I had it took exporatory surgery until they knew. At that point I went from 155lbs to 105lbs they couldnt wait. They took 3 foot of some of my small intestine a tiny bit of my large. They found I still had 5 spots thrughout my small intestine. Anyway I had two more bowel resections. I was so sick I didnt care anymore I wasnt scared I just wanted the pain to stop. Now 30 years later I find I am scared of it because it means short bowl syndrome. I started to freak a bit , but you know what I do when I feel pretty good I dont wast a day. I do something anything, fun or work just anything but laying in bed or watching tv all the time. I just remember what it was like being so sick and not be able to go anywhere but the doctors. I hope this helps some. I hope I didnt scare you.
Posted 3/3/2010 1:26 PM (GMT 0)
No, you didnt. Thanks. They do want to take 40-60cm though. And we only have about 220cm of small bowel.
Posted 3/3/2010 3:39 PM (GMT 0)
http://ostomylinks.co.uk/?p=333
Posted 3/3/2010 5:55 PM (GMT 0)
 

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Post Edited By Moderator (MMMNAVY) : 3/3/2010 11:29:57 AM (GMT-7)

Posted 3/3/2010 6:25 PM (GMT 0)
hey debilitated,
I am trying to be supportive and I would appreciate it if you would not be nasty to me. I thought maybe seeing that there is someone who has gone thru something much worse then you are facing and survived it might be of assistance.  I was unaware that the site was no longer had all of Randy's story on it. 
Seriously, how old are you? Because your behavior is making me wonder if you are not old enough to be on this site.
Navy
Posted 3/3/2010 6:35 PM (GMT 0)
Navy, I have had this disease for 10 years. I am old enough. I wasn't trying to be nasty. I apologise.
If you write some commentary with that link, I'd understand what you were trying to say.

all u linked was that "Debilitated, Your going to have an ostomoy"
"debilitated, What if you get like this"

To tell you the truth.. I Felt kinda sad because Im afraid to get that far with my disease.
Posted 3/3/2010 6:58 PM (GMT 0)
Debilitated, I did not link that you were "going to have an ostomy". I was just let you know that this is survivable. I have to admit I am concerned about you. It is alot of gut to face losing, and when I was facing losing at least six feet of guts Randy talked to me about his experience. (I am a worse case senerio person, because I take the perspective of prepare for the worse and hope for the best. Because I am Murphy's law person, if I am unprepared.)
I think it is healthy to focus on the positiveness of being able to survive this experience. Yes, it incredibly sucks. But is there something else you are concern about? Dying? Is it not being able to function? Quality of life issues? A lack of support system? Or is it venting?
I am asking, because I am not sure how to best support you.

Posted 3/3/2010 7:00 PM (GMT 0)
Yes im venting a bit. Sure.
Im 22 to be exact.

Everyone worries about being under the knife. Sure.
Waiting for the Surgeon to get back to me so I can ask questions.

Thanks for the support though Navy. I know you mean well. Im just a bit stubborn right now. Thanks. Don't let me get on your bad side. Just upset.
Posted 3/3/2010 7:18 PM (GMT 0)
It is absolutely understandable about being concerned about going under the knife, especially when you are in your early 20's. You are still establishing yourself, and concerned about being on your own. Lots of uncertainy. So how is your support system? I think part of helping deal with the issues of going under the knife is having a support system. I have to admit it would ease my mind to know if you do have a support system.
Posted 3/3/2010 7:35 PM (GMT 0)
I have 4 other siblings. One of my sisters is so supportive and without her i'd be lost. Im glad i have that. My mother helps me a lot with making food and always asks me if i need things. I have a lot of family support and Im glad to have it.
Posted 3/3/2010 10:49 PM (GMT 0)
I've read Randy's story before and, while I think it would scare anyone, Randy is always on here with upbeat attitude that I respect very much? I wonder if it were me would I have all that courage? I can hope but I'm sure I'd fall apart a little first!!

I also believe thatfew people go where he's gone (lucky you Randy).

I think it's normal to have periods of fear while we work through the next hard phase. Then when we look back we realize we handled it after all and now have more wisdom and perspective in life. Not that one really wants any of that in their early 20s but you will grow as a person if you can work through it. Think all the more confidence you will have when you come out the other side. ... You will make it through. Just hang in there
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