Worries in dealing

I wasn't really sure how to go about making my first post here, but my wife finally helped me along after a brief talk and I think I can finally start talking to you all. I've been lurking for a week or two, and just the bits I've read make me feel less alone in dealing with this.

As of this writing I'm 24, diagnosed with Crohn's Disease in 2005, a week before I graduated high school. I've been on Pentasa, Entocort, Prednisone, and Imuran. As well as various spells of Cipro and Flagyl for managing related things. I've had a bowel resection, and I'm currently dealing with my fourth or fifth peri-rectal abscess and my second full-on flare up since 2005.

The only good thing is that I started Remicade on the 11th, after two months of trying to get it cleared through my insurance. I'm currently on a rapid weaning of Prednisone, and 100 mg of Imuran a day, so that I'm not on three immune-suppressing drugs.

However, my main issue is that I don't know when anything is going to be better, and because of that, my lingering fears of another resection are starting to surface. This is difficult for me to talk about without feeling too silly, because I'm fairly certain that it's mostly me worrying too much. I know that no one here can tell me, immediately, when I will start feeling better. It's not right to try to put that burden on anyone. Instead, I'm just looking for comfort. The knowledge that I'm not the only one who has laid on the couch, or in bed, feeling like the pain from that last bowel movement won't go away and Tylenol just can't cut it, but it's not like the doctor will give me something stronger. The worry that the treatment won't work quickly enough, that things aren't getting any better, combined with the comfort that at least it isn't getting worse.

I'm trying not to be discouraged, after all, I just started the new treatment. But, as I'm sure so many of you have felt, that can be a challenge in itself.

Hi Mr. O. I'm sorry you are in pain and struggling with a flare up right now. Hopefully the remicade will work wonders like it did for my hubby. Back in early 2008, my hubby was hospitalized with a c-diff infection (he was diagnosed with ulcerative proctitis earlier in 2003). It was during this hospitalization that they discovered that he had crohn's instead of ulcerative proctitis. They put him on 120 mgs of solumedrol to try to control the crohn's, and it had absolutely no effect.

A surgeon started following my hubby's case, and basically they were talking about resecting the colon, and coming home with 2 stomas. In the meantime my husband had lost over 45 lbs! It was truly a terrible time. Our GI decided that it was worth it to try remicade as a last ditch effort (the worry was that given that he was on 120 mgs of solumedrol that adding remicade would make the c-diff infection a whole lot worse). My husband saw noticeable improvement with the second infusion, and he got to come home without surgery.

So remicade definitely has helped my husband avoid surgery, and I hope it'll do the same for you. Since then, we've had a bumpy road; but the bumps are smaller, they are less jarring, because of the remicade. My husband is currently on pred for a flare-up which wasn't fully controlled by remicade - but the flare up was much milder than what would have been without the remicade.

Hang in there, and I hope you get relief soon. ((Hugs))
PV

Hello Mr.0 and welcome to Healingwell. Remicade is one of the better meds used to heal abcesses and fistulas. Hope it does the trick for you too.

As for the pain meds, MANY Gi's don't like to prescribe pain meds. Most of us have to go to our family docs to get them prescribed. If your family doc won't prescribe them to you, then ask for a referral to a pain mgmt doctor. No need for you to suffer so. The GI's think it will slow the bowel down too much, is exactly what most of us want. I have lived with this disease for over 35 years and let me tell you I would say the last 20 or so have been on pain meds. I have alot of joint issues more than tummy issues and I couldn't function with them. I hope you can get some relief soon for your pain.

Hugs
Gail*Nanners*

I feel for you, and I can only reiterate what's been said. Although pain management won't do
anything to heal this disease, it gives us some quality of life, and I think that's so important!!
I hope you're treatment will kick in soon. Good luck!!

Nanners said...
Hello Mr.0 and welcome to Healingwell. Remicade is one of the better meds used to heal abcesses and fistulas. Hope it does the trick for you too.

As for the pain meds, MANY Gi's don't like to prescribe pain meds. Most of us have to go to our family docs to get them prescribed. If your family doc won't prescribe them to you, then ask for a referral to a pain mgmt doctor. No need for you to suffer so. The GI's think it will slow the bowel down too much, is exactly what most of us want. I have lived with this disease for over 35 years and let me tell you I would say the last 20 or so have been on pain meds. I have alot of joint issues more than tummy issues and I couldn't function with them. I hope you can get some relief soon for your pain.

Hugs
Gail*Nanners*

Well, my only hesitation with them is that it's not distinctly bowel-oriented pain, but rectal/abscess-oriented pain. Which makes me want it more, but I worry that my GI is gonna shove me off to a hospital that's good, but incredibly inconveniently located (I'm nearby Boston, and this doctor constantly wants me to go up there for Crohn's-oriented things, even though it's incredibly difficult for me to get there, and a number of other things.) because of various issues. Or that it's a sign of something getting worse and my Remicade treatment might have to be adjusted.

Of course, I didn't really have this pain until I saw the colo-rectal surgeon she told me to consult, because between the enemas, the scopes, and the probing on an already inflamed and sensitive area, I'm a little annoyed. Mostly, I'm just really tired of having a horrendously painful bowel movement in the morning, or whenever it comes, and then limping for several hours because Tylenol is useless for these. And then I can't sleep from the pain some nights.

And again, thank you all, these posts have helped already in ways I can't begin to describe.

takilra said...
hey there Mr. O
Well i am going for my 3rd dose this week of good ol remi..and I can say that the masive amounts of "butt" pain i wasw having with each b.m. has mellowed out enough that i haven't had to take any pain killers. Woo HOO!! I still bleed about 95% of the time with my bm's but ican handle that as long as the pain isn't there. Now in saying that i still have days i feel yucky, tired and just want to lay on the couch and do nothing.
Good luck to you and keep us informed in how you are doing!

I'm completely okay with blood, provided there's no pain. Thankfully, almost all of my bms have been blood-free in that regard. But glad to know that someone else is having it mellow for them on this.

Best of luck with your third dose.