Posted: 9/22/2016 6:12:53 PM EDT
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If there's already a thread on this you can flush this one!
I developed an issue after discovering I could drink red wine and stay in ketosis-- I've quit that nasty habit, but my scope showed a nice red patch. Anyone else having success beating this? Thanks. |
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My friends mother has had it since her teens. The doctor back then called it nerves and treated her as such. In the 70's they better understood the problem but still gave her medication for her nerves that would make it worst. Once she saw real doctors at Dartmouth hospital it was better controlled. She moved to theManchester and ended up having idiots for doctors that were so 70's. Now she is somewhat under control but the damage was done. See a real doctor on the subject. Beware of medication by PCP that will cause damage to your system. |
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Colitis/ ulcerative colitis isn't anything to mess around with. It's a good idea to see a specialist. While it can go into remission I'm not sure there's an instance of it "going away". It's something you learn to deal with because everyone is different in the severity and types of symptoms. It does increase your risk of colon cancer significantly.
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I got diagnosed when I was a sophomore in college. Struggled a few months before finally getting it under control. Prednisone worked initially for stopping a flare up, but I seemed to grow resistant to it pretty quickly (which is good, because it's a nasty drug). Fast forward about 4 years... I've been taking Humira once every two weeks with great results. I actually took no medication whatsoever for about six months until I started showing signs of another flare up due to a stressful period at my job. A few doses got me straightened out pretty quickly.
I guess I'm lucky, but it really does not affect my life at all anymore, other than the required injection every two weeks. |
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My wife had it. She first thought she had a stomach bug. Couldn't handle spicy foods. Mild stomach aches. About 3 weeks went by and she had severe stomach pain and black stools. Took her to the ER at 3AM. We were the only ones there and it took almost 2 hours to get a bed. Took about an hour later for the nurse to start IV. About 2 hours after that, the Doctor finally showed up. Gave her some morphine and sent her off for a CT scan. When she came back, he gave her 2 antibiotics in an IV. Spent about 8 hours in there for that...longer than it should have been. Only cost us about $2000 out of pocket. Total bill was $18k. That was February 2015 at the age of 27. First and hopefully only time she gets it. Later she had a colonoscopy. They said it was covered under insurance. Then I got the bill and they said "whoops, she's too young to be covered" |
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I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. 
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Quoted: I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. Quoted: Quoted: I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. |
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I'm fighting the bag as long as I can. When I had part of my colon removed because of a fistula I told my doctor to let me die rather then put me on a bag. 15 years and going. Quoted:
Quoted:
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I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. I developed colitus from C Diff after having my colon resectioned from Diverticulitis. Been battling it for 6 months now. I refused colectomy and now have hospice nurses visiting to keep me hydrated and pain free. Hoping the stool transplant works. |
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I've suffered w/ Crohn's and colitis since 2006. It forced me to quit work for awhile. I fought the dx at first because I don't look like I've missed too many meals. Ultimately I accepted my fate and I tried every drug my GE would prescribe. The biologics finally put me in the hospital so I gave up on conventional medicine. I went to Oriental medicine and acupuncture, which were not helpful. Finally, I listened to my old GP and I started meditating and using cannabis oil. That was the secret for me. I am now back to work and I've returned to my life. The only thing I have to do is take a capsule with a drop of cannabis oil in it each night. The wacky effects happen while I am sleeping and all I notice is that when I wake up in the morning I feel calm and stable.
The cannabis decision was hard for me. I was raised to think of pot as a hippy thing. I'm a professional and a church-going man and I have struggled with the stigma of using cannabis. On one hand I don't really want anybody to know what I take to control my disease but on the other I feel like I'm depriving others of a potential life-changing treatment by keeping quiet. |
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Quoted:
I developed colitus from C Diff after having my colon resectioned from Diverticulitis. Been battling it for 6 months now. I refused colectomy and now have hospice nurses visiting to keep me hydrated and pain free. Hoping the stool transplant works. Quoted:
Quoted:
Quoted:
Quoted:
I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. I developed colitus from C Diff after having my colon resectioned from Diverticulitis. Been battling it for 6 months now. I refused colectomy and now have hospice nurses visiting to keep me hydrated and pain free. Hoping the stool transplant works. Stool transplant? |
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Quoted:
I'm fighting the bag as long as I can. When I had part of my colon removed because of a fistula I told my doctor to let me die rather then put me on a bag. 15 years and going. Quoted:
Quoted:
Quoted:
I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. I don't see the point in fighting the bag any more. I have lived too much of my life with pain, discomfort, missing out on things, always worried about a bathroom, etc. Emptying a bag every once in a while seems like an easy trade. |
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Stool transplant? Quoted:
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I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. I developed colitus from C Diff after having my colon resectioned from Diverticulitis. Been battling it for 6 months now. I refused colectomy and now have hospice nurses visiting to keep me hydrated and pain free. Hoping the stool transplant works. Stool transplant? Called FMT officially. Used in antibiotic resistant forms of C Diff. They literally take screened, processed donor poop and implant it into your colon via colon scope. 90% effective in curing C diff. I think they are currently researching its use for UC/Chrons. |
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Quoted:
I don't see the point in fighting the bag any more. I have lived too much of my life with pain, discomfort, missing out on things, always worried about a bathroom, etc. Emptying a bag every once in a while seems like an easy trade. Quoted:
Quoted:
Quoted:
Quoted:
I'm seeing a surgeon next Friday about having my colon removed. Battled it for 12 years. Latest biological that worked (Simponi) stopped working and I'm done with it. I had severe Crohn's colitis for almost 6 years. Tried different conventional meds, none of which were effective. Tried a couple of biologics -- one seemed to help, but had to be stopped due to side effects, and the other (Tysabri) was completely ineffective. Early last year I was near death from diarrhea and dehydration, so the doctor gave me two choices: Have a colectomy, or go into hospice and die. So, today I have to dump poop from an ostomy pouch five times a day. Still not sure I made the right choice. I don't see the point in fighting the bag any more. I have lived too much of my life with pain, discomfort, missing out on things, always worried about a bathroom, etc. Emptying a bag every once in a while seems like an easy trade. Yeah, it's trading pain and discomfort for annoyance and inconvenience. But, you'll still have to be concerned about bathrooms when out and about for any length of time, because the pouch typically has to be emptied about every 4 hours. Sometimes it feels like the only things I do all day are eat meals and empty the pouch. The fastest I've ever managed to do a dump was 10 minutes. The longest, over 20 minutes. However, most dumps take about 15 minutes, from start to finish. So, on average I spend close to an hour and a half on the toilet each day. The most inconvenient aspect I found is that I can go no more than about 6 hours between dumps, otherwise the pouch gets much too full. This made it impossible to get an uninterrupted 8 hours of sleep at night. Originally I went to bed at 10 pm, then woke up at 1-2 am to do a dump, then back to bed. That got real old in a hurry, so I switched to sleeping 5-6 hours at night, and taking a couple of naps during the day, a routine that has worked out much better for my personal circumstances. Another thing about letting too much time go between dumps -- not only does the pouch get overly full of poop, the gas pressure will build up and cause the pouch to expand like a balloon. I've had that happen a few times, and when it does, the pressure causes the poop to squirt out of the pouch, the instant it's opened. Can be VERY messy. 
Speaking of messy, there have also been a few times when poop has built up at the stoma (instead of falling down into the pouch), resulting in a blockage that forces the poop to flow back around the stoma, and out between the skin barrier and the abdomen. That's also messy and annoying, because the poop can run down your leg. And, with a two-piece pouch, if you don't get a perfect seal between the pouch and the skin barrier, you can get leakage at that point. So much fun. Well, it's past time to do my evening dump, so I'll log off and go take care of business. I wish you well with your surgery. |
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Quoted:
I've suffered w/ Crohn's and colitis since 2006. It forced me to quit work for awhile. I fought the dx at first because I don't look like I've missed too many meals. Ultimately I accepted my fate and I tried every drug my GE would prescribe. The biologics finally put me in the hospital so I gave up on conventional medicine. I went to Oriental medicine and acupuncture, which were not helpful. Finally, I listened to my old GP and I started meditating and using cannabis oil. That was the secret for me. I am now back to work and I've returned to my life. The only thing I have to do is take a capsule with a drop of cannabis oil in it each night. The wacky effects happen while I am sleeping and all I notice is that when I wake up in the morning I feel calm and stable. The cannabis decision was hard for me. I was raised to think of pot as a hippy thing. I'm a professional and a church-going man and I have struggled with the stigma of using cannabis. On one hand I don't really want anybody to know what I take to control my disease but on the other I feel like I'm depriving others of a potential life-changing treatment by keeping quiet. 
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