Freaking out

[ErinDF]

I'm freaking out. I had a colonoscopy today and the doctor said that my whole colon on the left side was inflamed, which officially means the remicaide really wasn't working. Now we're trying Tysabri...which (like Remicaide) has a 60% success rate. So I asked what would happen if it didn't work, if I didn't respond....and he said, well we can try Humira or the other one like Humira whose name is escaping me, but that the odds of those working after remicaide failing are even lower.

He said that after those, it would be time to seriously consider surgery. Which is the first time that a doctor has said that.... Plus, because of the way my disease is, he said I would have to have an ostomy bag....

Anyway...I realize its not a guarantee, but I'm freaking out. I'm just tired of being sick and I'm scared of having surgery and I'm just sad.

Anyway, just needed to rant.
erin

 

[My Butt Hurts]

Yeah, every time I think of wearing a bag I freak out too.
I've tried the mild medications, sulfasalazine, asacol, pentasa, I tried Humira and it worked very well, but only for 4 months, chances are Cimzia will work about the same, and I guess Remicade will be next. Those are the top 3 strong ones - so now what??
There's a middle level of meds that I just started taking one of - Imuran. I guess there are a few others like that one. Have you tried any of those yet? I can't tell if it's doing anything yet. They say it can take 3 months to kick in. That's a long 3 months when you feel like crap.
I would make huge diet changes before I had surgery. The problem is - it's so hard to tell what works and what doesn't. Some people swear by the SCD diet (are those even the right letters?) I t hought my low residue diet was working for a while, now I think it was just the prednisone. Again - so hard to tell.
Anyways, good luck. I wish for no surgery for you!!

 

[ErinDF]

I haven't had any surgery yet. This is really my first prolonged flare since my first flare when I was 13 (11 years ago). I guess its just a really, really scare prospect for me to have an ostomy bag for the rest of my life. I mean (hopefully) that a good 60-70 years!

In answer to My Butt Hurts -- For years I was on asacol, 6-MP (imuran i think), and some mix of other drugs (prednisone for flairs, flagyl for the fistulas). Last year my doctor tried switching the asacol to pentasa (and something else I don't remember). But my doctor was really concerned that I was basically dependent on steroids, so we switched to Remicaide. It worked, kind of, for a while...at least it would suppress symptoms for a few weeks (they always came back). It also didn't do much of anything for my fistulas. Now my colonoscopy showed "about as much inflamation as you get with crohn's" as state by my doctor, so the remicaide definitely wasn't doing anything for the underlying problem...

Basically, I feel very defeated. I feel like we kind of wasted four-five months (and two hospitalizations) on a drug that ended up not working (not that we could have known that before). I just wish I could see a light at the end of the tunnel but right now it just seems very dark.

Luckily, I have a doctor I like/trust and I know he'll work with me to try every option before surgery, if that's what I want. So we'll see. In the meantime, I guess I have to just keep on keeping on, or something like that. And hope that Tysabri works...and that I'm not one of the one in 7000 or whatever who get horrible brain infections!

 

[rosie]

It just scares me hearing that a bag is a serious option for us!!!!!!! so god knows what ur going thru right now!! ((HUG)) ostomy bags are really real with crohns aint they

 

[theability]

Yeah I can relate to the freaking out, not that it is the same or close but being Hospitalized for a Deep Vien Thrombosis because of an IV, stabbed me in the gut literallly of how many complications we crohnies face daily in our lives.....

it can be so overwhelming so fast no doubt about it.......

 

[AmandaC]

Hi ErinDF. It's been awhile since you posted this thread and I just wanted to know how you got on? Did you end up deciding to have the surgery?

I'm in the exact same position now that you were in and would really appreciate some advice.

I've been on all available medication which is not giving me long term relief (mesasal, 6-mp, pred, antibiotics, and humira). I've been on the Humira for 6 weeks and have seen no improvements. If Humira doesn't work by 12 weeks he wants me to consider surgery (having all of the large bowel removed and have a bag). He is also concerned about major complications like perforations if I leave it too much longer.

This is such a big decision to make and I'm just hoping the Humira starts working so I won't have to make the decision to have surgery?

Anyway, thanks for listening. I hope you are well at the moment.

Amanda

 

[Jonhenry]

I'm bad to the point where I refuse a bag and go with DPU (disposable persnal undergarments) than have to have to wear a bag. I think it's personal perference. I've found good brands of dpu's that fit me very well and discreet and nobody notices, even if I have to change and do a clean up in the bathroom (the backback babywipes and extra dpu's are great to have on hand). Anyway, as I get older with this disease I just find more ways to work with it. And i do things that might require dpu's, and if you spend a few extra bucks you can get some that are very comfortable, secure, and discreet if you are in a position where you need that much protection. Everybody's different, and it's what you're willing to live with doing I guess, I'm not expert. Best wishes

 

[ErinDF]

Hey AmandaC/Jonhenry,

I ended up having a temporary ileostomy in late-October. Its actually gone really well! I've gotten used to it and my bloodwork has gotten much better. It wasn't fun at first, but I think it was well worth it. The bag is not NEARLY as bad as I thought it would be and its definitely better then how miserable I was before.

I am probably going to be reversed in May or June. Obviously I'm nervous that I'll go right back into flare, but I am happy now that I've at least had one ileostomy that I know that I could live with it if I had to.

Good luck with your decision. You should check out www.uoaa.org which has LOTS of information about ostomies.

Erin

 

[AmandaC]

Hi Erin,

Thanks for letting me know how you got on with the surgery. I have my appt with the surgeon on 16th March so will let you know what I decide.

I would be interested to see what happens when you have the ileostomy reversed after your bowel has had a rest? I hope you stay well!

Thanks for the website, I checked it out and its got some great info.

Good luck

Amanda

 

[ErinDF]

I will ALSO be interested to see what happens after my reversal...

Hah!
Erin