Crohn's Patients

[trixx]

havent been here in a while, alls well here. still on the remicade and pentasa

found a dealer that sells dank so ive been smoking really good lately.

[Earth A.D.]

My mom has crohn's disease. she's always having it flare up and the medicine she takes right now doesn't really help much. I think it would be pretty cool for my mom to start toking up or at least take thc pills to help with her condition. A doctor prescribing it would probably be about the only way she would ever willing get stoned too.

[floating_by]

It's been a while. Still doing well on Remi and the herb. Really well in fact.
Took a little roadtrip and shot my personal best golf score here recently. Up to 212 lbs now! Working out and walking the golf course I've put a lot of muscle back on. Still an eating machine. Good to see old and new faces here!

[scrantonstoner]

never saw this thread before and it came at an interesting time...

been flaring worse then ever... the pain has never been like this before... the blood in my stool has never been so bad... my knees i can barely walk because of the pain and the meds just dont seem to be working the same

i think my friend is driving me to the hospital tomorrow

ive had this disease now for 10 years and to think that it will always be by my side forever really gets to me

[JCrohn]

I got a question for you guys.

I was reading somewhere that 2/3 to 3/4 of patients require surgery at some point in their lives... im kinda worried about this.

My crohns is located in the terminal ileum and is rather small....regional enteritis.

Will the herb and the pentasa (6x a day) help me prevent having surgery?

Had crohns for 2 years now and im 19...

Also, whats the oldest living person you know with crohns?

And.... possible cure found for crohns patients .

Possible cure found for Crohn's disease | Society | guardian.co.uk

[ModderXtr]

I stopped reading at "and a 1% to 2% chance of death" as one of the side effects.

[scrantonstoner]

well im sure there is no record of the oldest person... hope this helps

"In long-standing Crohn’s disease and ulcerative colitis, the risk from colon cancer is slightly higher than in the general population (about 3 to 5 per cent), but overall life expectancy in people with these conditions is very similar to that in the general population and need not be a cause for concern."


and if anyone read my post the result of my hospital visit is just more and more meds

[1blood1life]

Originally Posted by ModderXtr

I stopped reading at "and a 1% to 2% chance of death" as one of the side effects.

Most of the biologics carry a risk of death due to allergic reaction, so personally, I'd be more willing to take a 1-2% chance with a stem cell procedure that actually has a chance of fully curing me than taking that chance with some drug that's only helping for the time being. But, that's just me.

[ModderXtr]

That's a very valid point. I retract my previous statement, because you are 100% correct. Im gonna go re-read that article actually.

[1blood1life]

Cool, I'm glad you're at least looking at the whole article. I really do think stem cells are where it's at for us, as well as so many other diseases out there. I was trying to get into a stem cell trial for Crohn's back in March, actually. Unfortunately, it got canned about two weeks before I qualified (had to detox from Tysabri, the biologic I was on for a few months) because of patients exaggerating their symptom relief, but things like that are definitely the future of medicine.

[fallforlife]

Well this is my first post on Grasscity, though not my first time perusing. This seems to be a pretty extensive post and I haven't read all 55-pages of it but I was diagnosed with Crohn's about five years ago and since then I've been on, Asacol, Flagyl, 6-mp, Prednisone, and I believe one other pill but I can't think of what it was.
I got Remicade treatments for a little over a year and they were great, they really did help me, it helped with my poop, helped me eat more and just generally made me feel a lot less crappy. That is until I started having allergic reactions to the treatment, which caused my throat to swell up making me unable to breathe. After two more infusions, and two more reactions, I said fuck it I'm not doing this anymore.
Currently I'm using Humira, so far I've, as I like to call it, Shot-up three times and I don't feel any better.

The problem is medical marijuana is not legal in PA yet, hopefully it won't be too much longer though. Smoking some ganja helps me more, and is much safer than many of the meds I've been on, than anything else I've tried.
My arch nemesis is milkshakes. If I have a milkshake I better be pretty close to a toilet, but I feel confident that I could drink a milkshake and if I smoke some green, I'd be capable of not dying through my rectum. (sorry about the graphics but it's the truth).

[NiteFire77]

Been through another 5 day hospital stay. Ugh. On the same meds as always. I've been so careful with my diet too... it just doesnt want to stop acting up and swelling. The docs said I'll probably need surgery soon, if the Imuran doesnt start working.

My question is, How long does the surgery last? Whats the average length of stay for recovery? and without insurance, what does the surgery cost?

[1blood1life]

Originally Posted by fallforlife

Well this is my first post on Grasscity, though not my first time perusing. This seems to be a pretty extensive post and I haven't read all 55-pages of it but I was diagnosed with Crohn's about five years ago and since then I've been on, Asacol, Flagyl, 6-mp, Prednisone, and I believe one other pill but I can't think of what it was.
I got Remicade treatments for a little over a year and they were great, they really did help me, it helped with my poop, helped me eat more and just generally made me feel a lot less crappy. That is until I started having allergic reactions to the treatment, which caused my throat to swell up making me unable to breathe. After two more infusions, and two more reactions, I said fuck it I'm not doing this anymore.
Currently I'm using Humira, so far I've, as I like to call it, Shot-up three times and I don't feel any better.

The problem is medical marijuana is not legal in PA yet, hopefully it won't be too much longer though. Smoking some ganja helps me more, and is much safer than many of the meds I've been on, than anything else I've tried.
My arch nemesis is milkshakes. If I have a milkshake I better be pretty close to a toilet, but I feel confident that I could drink a milkshake and if I smoke some green, I'd be capable of not dying through my rectum. (sorry about the graphics but it's the truth).

Man, your former meds list sounds like mine. In my 3 and a half years since diagnosis, I've been on Imuran (the cousin to 6-mp), Prednisone, Remicade, Humira, and Tysabri (another biologic that affects a different mechanism, something in the brain, than Remicade and Humira, which are TNF blockers). Currently on nothing but Marinol and good old bud though, and somehow still feeling great, even seven months after stopping Crohn's meds.

Are you still in the "booster" shot stage of Humira, where they give you 4, then two weeks later 2 more, then two weeks later 1, and then you can finally start regular shots? It sucks that you're not noticing any benefits yet. The one good thing about Remicade and Humira for me was that they did work pretty quickly, within a matter of days, but both stopped being effective after 9 months or so on them.

How are you feeling, since the Humira isn't working?

[1blood1life]

Originally Posted by NiteFire77

Been through another 5 day hospital stay. Ugh. On the same meds as always. I've been so careful with my diet too... it just doesnt want to stop acting up and swelling. The docs said I'll probably need surgery soon, if the Imuran doesnt start working.

My question is, How long does the surgery last? Whats the average length of stay for recovery? and without insurance, what does the surgery cost?

Shit, man, I don't know what to tell you. I really do hope you feel better soon, and definitely sending good vibes your way to avoid surgery.

Just throwing this out there, you might want to get a second opinion about surgery. If you're in a last resort position, then, by all means, do it. But, remember that there's only so much intestine in there, and you don't want to be stuck at a point where they can't take anymore. Most Crohn's patients (75% or so) end up having surgery at some point, and the disease typically does come back, unfortunately, even after removing the damaged section.

I've got no idea about your questions though, sorry. I believe recovery depends a lot on whether or not it's an open surgery vs. a laproscopic one, where they just make a few small incisions and do most of the work internally, then get the section of intestine out. Laproscopic surgeries, you'll be back at work within a few days, no problem. They're pretty cool, actually. I had a laproscopic surgery done to remove an ovarian cyst a couple years ago, and you can't even see the scars anymore. For open surgeries, I think the recovery is quite a bit longer though.

[fallforlife]

Originally Posted by 1blood1life

Man, your former meds list sounds like mine. In my 3 and a half years since diagnosis, I've been on Imuran (the cousin to 6-mp), Prednisone, Remicade, Humira, and Tysabri (another biologic that affects a different mechanism, something in the brain, than Remicade and Humira, which are TNF blockers). Currently on nothing but Marinol and good old bud though, and somehow still feeling great, even seven months after stopping Crohn's meds.

Are you still in the "booster" shot stage of Humira, where they give you 4, then two weeks later 2 more, then two weeks later 1, and then you can finally start regular shots? It sucks that you're not noticing any benefits yet. The one good thing about Remicade and Humira for me was that they did work pretty quickly, within a matter of days, but both stopped being effective after 9 months or so on them.

How are you feeling, since the Humira isn't working?

Did those medications ever work for you? They haven't ever really done a thing for me. The doctor thought that at least the prednisone would help me gain some weight but it did nothing. But right now the only meds I'm on are Humira and Marijuana.

I've already done the boosters and saturday will be the third time I've given myself the regular injection. I feel pretty normal, for a Crohn-y anyway. My stomach hurts after I eat, of course no appetite (unless I have the munchies), and my diarrhea shows no sign of improving whatsoever. It doesn't leave one with much hope.

Does anyone else think it's a little self-defeating that one of the side-effects of Asacol is diarrhea? I hated taking Asacol. You'd think that taking anywhere between 9-16 pills a day there would be some improvement, but there's nothing. The only sign of them is when I look in the toilet and they're still floating around, undigested..

This might be a sore subject but, does anyone else suffer from fistulas? Ooff.