Hi,
My husband was one of the first 50 patients to have the J pouch in 1989 by Dr Peck in CA, and has had pain ( I suspect pouchitis) for 15 years since Ive known him. He was Dx'd with Ulcerative colitis age 9, surgery age 18. For basic background, he was not breastfed and they did not know about the SCD diet and he has been on Flagyl all this time. After I met him he started to eat partial non GMO diet ( I almost lost my gallbladder and gained 50 lbs and got an adult onset allergy to eggs in 1998 after they introduced GMOS into the US food supply) So, I had him taking acidophilus when I could, taking fish oil and other supplements, but he refused to go to doctors except in the most severe pouchitis times. The rest of the time he's been in pain daily.
He did go on the Atkins diet years ago ( interesting since its a no carbs diet) and got much better. So much better he was able to go off flagyl.
He's recently gotten TWO fistulas which probably started 2 years ago and he ignored and refused to go to a DR until his butt started leaking on the left side. He just went through a scope and they found: 5 Ulcers on the Pouch,2 fistulas on the pouch,and every time the surgeon pressed on the part of the pouch where the REMAINING tissue of his intestine they used to create the pouch was, it BLED.
The surgeon is now referring him to a colorectal surgeon and we are guessing they will want to do the surgery with setons, but we haven't spoken to the colorectal surgeon since he just got scoped yesterday. He cannot sit, he lays in bed or stands to work at his computer ( software engineer) and now his legs are KILLING him from standing. I have ordered a pillow for him to sit on from this thread but wondering if anyone has new links for new pillows and any other major things to recommend in the meantime. He has been doing sit baths but no every day.
The current GI dr was questioning whether he had ulcerative colitis OR whether it was Crohn's all along in which case maybe much of the treatment was wrong.....???? Dr Peck was always telling him he was a unique case and didnt have Crohn's...
Im beginning to wonder WTH they did to my poor husband...... Ive looked at the SCD diet and will start him on it as much as he can tolerate, and am wondering if there are specific supplements and vitamins and fresh juices specific for Crohn's or ulcerative colitis as well.
I used to work in the medical field, do holistic medicine and am VERY concerned he will lose the pouch and be forced into an ileostomy . He almost committed suicide at age 18 when he had the surgery to remove all his large intestine and gave him a bag. They put a J Pouch in due to his suicidal desires back then but it wasn't a great surgery since he was one of the first to have it. He has alway dealt with mild incontinence and from what we've read ,having fistula surgeries could destroy any continence he has left. It appears his refusal to get help sooner has also put him in a VERY bad situation. He is ADAMANT he will not have an ileostomy at age 51. He also under reports to doctors almost every side effect he has . He didnt want me to call a GI dr for years or go to them with him as I'm much more blunt and honest about whats going on with his symptoms et al, than he is with them.
Currently he is on Flagyl: 250 x2 x a day, omegabrite fish oil and VSL #3 DS ( prescription acidophilus).
HELP!! We are in Denver CO and need all the support we can get ( as well as any advice about sitting cushions )
Thank you all !
I should add: I have IBS, and have a disabled daughter with RA ,BP and Central pain syndrome. We refused to allow Rheumatologists to give her Remicade,Enbrel, methotrexate back when she was DX'd with RA as a direct result of taking lithium at age 9. We saw all the cancer cases in the pediatric ward and the warning labels of cancer from taking these immunosuppressive drugs. 10 years later, the FDA Black boxed all these drugs for children and adolescents so we were thankful we stuck to our guns. Her arthritis is still there but we chose to use holistic treatments instead and she's no worse off than those that took the drugs. It appears some people have found relief from these drugs for Crohn's or ulcerative colitis but Id prefer to put him on the SCD diet and avoid all these drugs if possible. Please advise if you have used holistic treatment as well.
My husband was one of the first 50 patients to have the J pouch in 1989 by Dr Peck in CA, and has had pain ( I suspect pouchitis) for 15 years since Ive known him. He was Dx'd with Ulcerative colitis age 9, surgery age 18. For basic background, he was not breastfed and they did not know about the SCD diet and he has been on Flagyl all this time. After I met him he started to eat partial non GMO diet ( I almost lost my gallbladder and gained 50 lbs and got an adult onset allergy to eggs in 1998 after they introduced GMOS into the US food supply) So, I had him taking acidophilus when I could, taking fish oil and other supplements, but he refused to go to doctors except in the most severe pouchitis times. The rest of the time he's been in pain daily.
He did go on the Atkins diet years ago ( interesting since its a no carbs diet) and got much better. So much better he was able to go off flagyl.
He's recently gotten TWO fistulas which probably started 2 years ago and he ignored and refused to go to a DR until his butt started leaking on the left side. He just went through a scope and they found: 5 Ulcers on the Pouch,2 fistulas on the pouch,and every time the surgeon pressed on the part of the pouch where the REMAINING tissue of his intestine they used to create the pouch was, it BLED.
The surgeon is now referring him to a colorectal surgeon and we are guessing they will want to do the surgery with setons, but we haven't spoken to the colorectal surgeon since he just got scoped yesterday. He cannot sit, he lays in bed or stands to work at his computer ( software engineer) and now his legs are KILLING him from standing. I have ordered a pillow for him to sit on from this thread but wondering if anyone has new links for new pillows and any other major things to recommend in the meantime. He has been doing sit baths but no every day.
The current GI dr was questioning whether he had ulcerative colitis OR whether it was Crohn's all along in which case maybe much of the treatment was wrong.....???? Dr Peck was always telling him he was a unique case and didnt have Crohn's...
Im beginning to wonder WTH they did to my poor husband...... Ive looked at the SCD diet and will start him on it as much as he can tolerate, and am wondering if there are specific supplements and vitamins and fresh juices specific for Crohn's or ulcerative colitis as well.
I used to work in the medical field, do holistic medicine and am VERY concerned he will lose the pouch and be forced into an ileostomy . He almost committed suicide at age 18 when he had the surgery to remove all his large intestine and gave him a bag. They put a J Pouch in due to his suicidal desires back then but it wasn't a great surgery since he was one of the first to have it. He has alway dealt with mild incontinence and from what we've read ,having fistula surgeries could destroy any continence he has left. It appears his refusal to get help sooner has also put him in a VERY bad situation. He is ADAMANT he will not have an ileostomy at age 51. He also under reports to doctors almost every side effect he has . He didnt want me to call a GI dr for years or go to them with him as I'm much more blunt and honest about whats going on with his symptoms et al, than he is with them.
Currently he is on Flagyl: 250 x2 x a day, omegabrite fish oil and VSL #3 DS ( prescription acidophilus).
HELP!! We are in Denver CO and need all the support we can get ( as well as any advice about sitting cushions )
Thank you all !
I should add: I have IBS, and have a disabled daughter with RA ,BP and Central pain syndrome. We refused to allow Rheumatologists to give her Remicade,Enbrel, methotrexate back when she was DX'd with RA as a direct result of taking lithium at age 9. We saw all the cancer cases in the pediatric ward and the warning labels of cancer from taking these immunosuppressive drugs. 10 years later, the FDA Black boxed all these drugs for children and adolescents so we were thankful we stuck to our guns. Her arthritis is still there but we chose to use holistic treatments instead and she's no worse off than those that took the drugs. It appears some people have found relief from these drugs for Crohn's or ulcerative colitis but Id prefer to put him on the SCD diet and avoid all these drugs if possible. Please advise if you have used holistic treatment as well.
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I have not much experience with issues your husband has been dealing with. 
