The end of the road...

Well all I've got Humira as my last ditch effort and then it looks like the old colon might be on its way out.

As some of you might know I was diagnosed almost 4 years ago in Afghanistan and because of my lack of knowledge and general stubbornness I didn't do much to treat it.

Fast forward 2 years.

I'm going back and forth to the VA Hospital and trying different types of Mesalamines, from Asacol to Pentasa and finally on Apriso. None of which seem to help and it seems as though Prednisone is the only thing to knock it down.

Then about a 9 months ago I started going down the Azathioprine and 6MP route which ended shortly with severe cases of reflux/gastritis. Then I was lucky enough to get cdiff twice, the first after taking antibiotics for an ingrown hair (of all things) and the second after a surgery I had for a motorcycle accident. After the second bought I never fully recovered and this was in July. Next up was Remicade, got to my third infusion and started vomiting, tried it one more time with the same results. My doctors are guessing I built anti-bodies. So I was still acutely flared and have been on 40mg of prednisone for the past two weeks with very little success, seems as though I'm becoming resistant to my wonder drug. I've been doing my retention enemas but have a hard time retaining them as my gut is very active at night and I cannot tolerate laying on my left side. The urgency and accidents I have on almost a regular basis has me so stressed out to leave the house it's nearly unbearable...but alas the bills need to get paid.

So here I am, waiting for my Humira to come in the mail to start the last and final treatment. To be honest I'm not very hopeful but I'm also not upset. I'm 27 years old and the past 2 years of the 4 diagnosed have taken a serious toll on my health, both mentally and physically. I just want to be there for my infant daughter and supportive wife and feel as though the way I've been going isn't the right route. So I'm at the end of the road or the beginning, not quite sure yet. I'm assuming that if/when the humira doesn't take I'll get another colonoscopy and start consulting with surgeons. Luckily I live in CT and the VA here partners with Yale Hospital which is fairly good and medically I'll be covered excuse it was service connected, which is something I feel very fortunate about.

I could always hold out and limp along until another drug comes out and maybe try that but at what cost to quality of life? I'm sure most of you have all pondered this same thing and I'm sure most are just as scared as I am about the prospect of surgery, but I think for me I want to be in the process of healing and adjusting rather than stressing over when the inevitable next flare will come or some long term side affect from he disease or prolonged steroid use.

In the past 4 years I've seen a combined total of about 8 months of remission, or as close to it as I could remember. I feel like I ran the gauntlet and gave it a good run but enough is enough. I'll keep you all posted on the Humira and if I have a surgical consult. Good luck all and thanks for letting me vent!

Good luck with the Humira. That was the one and only drug I'd didn't try before my surgeries. I just couldn't waste anymore time (not saying you are wasting time....I was really, really sick at that point and couldn't take anymore time to try something else.) Try not to be afraid of surgery if it comes to that. I had j pouch surgery 3 years ago and it's really been a blessing. It's not perfect but beats UC hands down any day. And the super bonus is no more crappy drugs! Best wishes. :)

rabbit, i feel the same as you do. i've done remicade and humira already and see my GI tomorrow. i'm gonna beg him to let me try simponi before i need to get surgery. prednisone isn't helping this time around (started it in july and just increased to 40 mg again) and neither is 6mp. i honestly think i'd feel so much better having this piece of crap colon out of me. at least a bag would mostly be predictable (i hope!) instead of never knowing what's gonna happen with my colon.

everyone i know says "oh, you're too young to have surgery and a bag" but all i'm thinking is "i'm not gonna get OLD with this colon trying to kill me all the time either."

hopefully, humira will help you. i got c diff immediately after taking it so i'm already nervous about the same thing happening with simponi. but i figure, go big or go home!!!

Oh bananagirl, you might've just put the fear of god in me by saying you got cdiff as soon as you started humira. That's one nasty son of a ***** I DONT want again. Also, I'll look into this simponi. Either way though I think I'm pretty much cutting my losses at this point and I'm already mentally preparing myself for the surgery.

@soystud haha looks like I'm going bag!

Rabbit good luck and thanks for your service.
My son back in 2000 he was about 22 got his pouch, iv pred and cyclosporine failed.
Made up his mind no more meds and to get rid of the colon before it killed him.
Actually at that time it was killing him,crapping blood 35 times a day,sleeping by the toilet.
He does fine with the pouch, and is healthy.
Old Mike

Rabbit81586 said...
Marianne,

What is the most difficult thing about having a pouch at this point? Like what would you say is the hardest part about having it, once you've healed from the surgeries and have adjusted, for the most part?

I can't say I find it difficult. The most inconvienent thing about my j pouch I would say is going out in the evenings because that is when my j pouch is most active. I go about 4-6x a day but it seems those 4-6x are from 4pm to 9pm. (I don't use the bathroom at all during the day) So if I'm out for the evening having dinner, hanging with friends, ect. I usuallly end up using the restroom few times. The good news is there isn't any urgency like the UC days so I can hold it as long as I need to. So for me this is a minor thing. I had no life with UC and was in a constant flare for 5 years going to the bathroom 20 plus times a day. This procedure truly gave me my life back....no regrets. :)

I don't understand the "too young for a bag" comments. Does that mean someone is too young to be healthy? People said that to me also and I was like well I'm too young to be sick and on all kinds of dangerous drugs too! I didn't want to wait around and grow old sick!
Anyway, rabbit, surgery is scary but it will get rid of the uC and don't be afraid of ending up with a bag. I chose one, I love it!
Good luck!

summerstorm said...
I don't understand the "too young for a bag" comments. Does that mean someone is too young to be healthy? People said that to me also and I was like well I'm too young to be sick and on all kinds of dangerous drugs too! I didn't want to wait around and grow old sick!
Anyway, rabbit, surgery is scary but it will get rid of the uC and don't be afraid of ending up with a bag. I chose one, I love it!
Good luck!

yeah I had a GI once say I was too young for surgery. Never understood that either....makes zero sense!

"Too young to have a bag" comments give me pause. Rabbit, you are giving it your all. At some point ,we all have to step off the diving board. Science lags, and life beckons.
Best to you whatever you decide.

Not sure from your posts if you would be looking into a permanent ileostomy or a j pouch but if the time comes and you want a j pouch please make sure you have a surgeon that has done tons of them. Again, good luck with the humira.

If you are starting to think about surgery, then I recommend you read bootspur's blog (she used to post in this forum regularly). She kept a blog throughout the process and recovery from her jpouch surgery. She mentions tips, techniques, and other things that are good to know. It is a good read:
http://ronnielee-fightingforit.blogspot.com/2012/08/coming-to-terms.html

Well, with uc our immune systems are attacking our large intestine. Surgery removes that large intestine which is the target for our immune system's attack and doctors refer to that as a "cure". Although, I don't think any of us with an auto-immune disorder will ever have a 'normal' immune system. As extra-intestinal complications do occur with around 20% of those with uc, meaning one later gets Rheumatoid Arthritis, Lupis, or some other auto-immune disorder. Of course there is also the possibility of a misdiagnosis, where you really have Crohn's disease not UC and in that scenario your small intestine is affected too, and no jpouch or end-ileo will cure you in that scenario either.

Take BBUC's advice and find a surgeon who has LOTS of experience performing J-pouch surgery; it is a pretty complicated surgery but if you have the right surgeon than there shouldn't be any problems.

You'd probably be better off asking the Ostomy board here or going to jpouch.org for recommendations on surgeons in the NYC Metro area or the ones that are at Yale/VA. I'd also ask your GI for some recommendations.

I know that there are people that travel from all over the World for some of the surgeons at Mount Sinai in NYC.