HealingWell
Search Close Search
☰

I think I'm going for it.

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/9/2012 3:01 PM (GMT 0)
After getting out of the hospital yesterday, things went so far down hill. I passed out running to the bathroom last night and had an accident. I cannot live like this anymore. I've tried everything. LDN, 6MP, Humira, Remicade, etc. Unfortunately I can only get a perm illeo but at this point I don't care. I cannot live like this anymore. I need my life back. I'll keep you updated.
Posted 4/9/2012 3:07 PM (GMT 0)
Bosnianboy, I'm sorry you are struggling. I hope that you can get the treatment you want soon and get a good solid remission.
Posted 4/9/2012 3:35 PM (GMT 0)
You sound like I did when I made my surgery decision. Sometimes medication is not the answer for some people. Don't view the bag as a bad thing (and this is coming from a 22 year old girl). I have one and I feel like I did before I had UC. There is nothing I can't do because of the ileo. The members on the ostomy forum are really nice and helpful. Good luck to you!
Posted 4/9/2012 3:42 PM (GMT 0)
I don't blame you Bosnian Boy. I often read the ostomy forum here and while it is a tough recovery, sounds like it is well worth it. You have really been through so much. Pls keep us posted.
B
Posted 4/9/2012 3:46 PM (GMT 0)

bosnianboy12 said...
After getting out of the hospital yesterday, things went so far down hill. I passed out running to the bathroom last night and had an accident. I cannot live like this anymore. I've tried everything. LDN, 6MP, Humira, Remicade, etc. Unfortunately I can only get a perm illeo but at this point I don't care. I cannot live like this anymore. I need my life back. I'll keep you updated.

what dosage of remicade are you on? Most GI don't put people on a high dose.

You should be at 640ml

10ml/kg

Try LDN/6MP/ASACOL/MAX Remicade all at the same time....if that doesn't stop it....nothing will.



oh and why can't you get a j pouch?
Posted 4/9/2012 3:54 PM (GMT 0)
Yikes, sounds like you shouldn't have even been released from the hospital. Get back in there and get some relief and rest(hopefully prednisone works for you?), and then you can make the best decision for you. I see from your sig you have been dealing with this since you were a teenager and have been through just about every drug there is, maybe that colon just needs to come out.
Posted 4/9/2012 3:57 PM (GMT 0)
Somedude,

I was on all of them before. Not sure of the dosage but it stopped working for me. Gave me a good few years. I can't get a j-pouch because I have fistulas and such. It sucks so much.
Posted 4/9/2012 3:58 PM (GMT 0)

aquafly79 said...
Yikes, sounds like you shouldn't have even been released from the hospital. Get back in there and get some relief and rest(hopefully prednisone works for you?), and then you can make the best decision for you. I see from your sig you have been dealing with this since you were a teenager and have been through just about every drug there is, maybe that colon just needs to come out.

Nah, he wasn't dealing with this disease LIKE THIS since he was 13. If he did, he would have had surgery by age 15. And just a technical fact. It's not the colon that is the problem, it's the immune system that attacks the colon which is the culprit.
Posted 4/9/2012 4:00 PM (GMT 0)

bosnianboy12 said...
Somedude,

I was on all of them before. Not sure of the dosage but it stopped working for me. Gave me a good few years. I can't get a j-pouch because I have fistulas and such. It sucks so much.

fistulas where? Is your small intestine ok?

As far as I uncerstand, if your small intestine is ok, you can get the J pouch. I may be wrong though.
Posted 4/9/2012 4:11 PM (GMT 0)
Im so sorry to hear you aren't well. But sometimes in life you need to get to that "I can't handle it anymore" breaking point to move forward or make a decision.
If you make that decision be proud of yourself that you did your best and surely the best will come for you.

Good luck xx
Posted 4/9/2012 4:11 PM (GMT 0)
You'll be in good hands at the Cleveland Clinic.
I've never regretted surgery.

sue
Posted 4/9/2012 4:13 PM (GMT 0)
I'm so sorry to hear things are not going well but it seems like you've suffered for way too long and tried pretty much everything. Luckily surgery is an option for you and though it's far from ideal and a huge adjustment and learning curve hopefully it will give you a crohn's and pain free future and a great quality of life. As for your age, I know it's hard but the idea that only elderly people have ostomies is a thing of the past unfortunately. IBD is an epidemic now which usually hits the young and I know of babies, young children, teens all who have had to have surgery and are growing up with it. So, it's unfortunate but not impossible and I hope you have a lot of support and seek our more if you need it.
Good luck and keep us posted.
Posted 4/9/2012 4:24 PM (GMT 0)
Having had surgery I would say it is an ideal solution. No more meds, no more cycles of disease, no more funky diets. And best of all, a predictable life!!! You can't buy that.

Sue
Posted 4/9/2012 4:36 PM (GMT 0)
Well first I want to say yay for being healthy soon!
And having a bag isn't the end of the world! I was 21 when I got sick, I should have gotten one then instead of wasting my life! I got a perm ileo at 29, I wanted to beat uc and take my life back and I did! I assure you no one will know you have a bag. I've done lots of things since then, cruises, vacations, had the true new orleans experience (drunk or hungover the whole time:)), dancing, exercising, everything uc kept me from doing! I eat anything I want and wear my regular clothes.
I chose a bag, I wanted it over and done with, I didn't want more surgeries. I have never regretted it!
Good luck!
Posted 4/9/2012 5:48 PM (GMT 0)
Somedude...just chiming in with what I understand.
The fistulas would be rectal/perianal. That would be questionable as to whether he has CD or not. To free the area of any "functioning" would hopefully lessen the fistulas.

q
Posted 4/9/2012 5:56 PM (GMT 0)
Bosnianboy...I think it's a good decision.

q
Posted 4/9/2012 7:09 PM (GMT 0)
I think I would decide its time in your shoes too. Hope everything goes well. Keep us posted.
Posted 4/9/2012 7:13 PM (GMT 0)
Best of luck bosnianboy. I think I'd be headed for surgery if I were in your shoes, too.

Somedude, with the number of fistulas he has (which are all anal), there's a pretty good chance he has Crohn's instead of UC, so that's one reason. Plus, if the fistulas don't heal before he has takedown surgery, it would be absolutely miserable having the kind of BMs one has after takedown with all those fistulas.
Posted 4/9/2012 7:30 PM (GMT 0)
It's heartbreaking what this disease does to such young & vibrant people.
bosnianboy12, best to you, just make sure it's UC & not CD before having surgery.
You've been through hell, you deserve a break.
Posted 4/9/2012 9:11 PM (GMT 0)
All the best to you. You will be so much happier and feeling so much better getting that diseased colon out of your body. Sending well wishes your way.
Posted 4/9/2012 9:44 PM (GMT 0)
Regardless if he has Uc or CD, he still has a malfunctioning colon and it seems he would benefit from surgery.

I'm sorry you have gone thru so much but it does seem that you're at the end of the line. Hopefully if and when you have surgery, you will enjoy the life you deserve.
Posted 4/9/2012 10:10 PM (GMT 0)
Yes, people with CD that effects their colons still can have (and have had) their colons removed. When the colon has deteriorated to that extent, it really doesn't much matter if it's UC or CD.
Posted 4/9/2012 10:23 PM (GMT 0)
Somedude,

I was just empathizing with a person who has been dealing with this disease for awhile--I can't imagine being diagnosed at age 13. As other posters wrote, if your colon isn't working, it won't benefit you have it in your body. As far as I know, there is no way to surgically remove one's messed up immune system, so the guy's got to do something.
Posted 4/9/2012 10:34 PM (GMT 0)

aquafly79 said...
As far as I know, there is no way to surgically remove one's messed up immune system, .

Actually there is lol. It's called bone marrow transplant. Basically it's a reset of the auto immune system. My GI though it was an interesting idea but nobody is going to do this for UC...I don't blame them...but this would be the way to attack the problem at the core.
Posted 4/9/2012 10:44 PM (GMT 0)
Sorry to read that you had that nighttime setback. I hope the Cleveland Clinic can resolve the issue of your diagnosis, to determine whether or not you have Crohn's. It's very unfair that you got hit with all this. One of our young married members, Pam222, went thru a terrible time somewhat like yours for over a yr-- 'til she finally started to feel better after colectomy. Hopefully, your health will turn for the better, too. It sounds like you have a strong will to beat IBD, very important. All best wishes. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
✚ New Topic ✚ Reply
12