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1288945 tn?1271972452

J-Pouch Surgery

In 1983 I developed ulcerative colitis and was taking azulfadine and prednisone. In 1990 I underwent a surgery called the J-pouch in which my colon was removed and an internal pouch was created so I would not have to wear a ostomy bag. The surgery was very successful but what I don't understand is why more people with UC don't undergo this surgery? I see an ad on TV for a medication for the disease yet once a person undergoes this surgery they are off all medications and can live a normal pain free life.
   Has anyone else undergone this surgery and are happy that they did like me? Btw my surgery was performed at the Cleveland Clinic Hospital in Ft Lauderdale. I was 31 when I had it done.
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1974283 tn?1425609124
I'm only 18 and I was presented with that option last year. I was going to take it until I ended up in the hospital and a different team of doctors told me I have Crohn's instead of UC. If I only had the disease in my colon I would have went for it, but I also have it in my small instestine and they still insist that I only have UC, which doesn't make any sense.. The doctors told me that they would have me sign a form for freedom to do as they need to keep me healthy, which could lead to having an ostomy for the rest of my life. Just because that would help physically doesn't mean it would help mentally.

A lot of people go through what I am, I made quite a few friends going for remicade who have the same diagnosis as I do.

Sometimes it's not that easy. Sometimes we have more good days then bad.. And some of us, well, we have too much pride to let nurses "try" to take care of us.
Helpful - 0
Avatar universal
My dates are very close to a number of the people who are posting.  Diagnosis of UC in 1982.  Colectomy/J Pouch (UMass Memorial Hospital) in 1990.  Pouchitis pretty steadily after that.  
Diagnosis of Crohn's Disease in Sept 2011.  Now on Humira.
I started using a gluten free diet in 2003 and it did help my symptoms.
A little worried about the effects of Crohn's on my pouch...
Helpful - 0
483733 tn?1326798446
What a wonderful thing to do.  It is certainly good for you that you don't have to stress over having enough funds to meet your needs.

I'm in Canada so things would be different here.  We are covered for everything except buy insurance (or get from an employer) coverage for prescriptions, vision, dental and things like massage.  When I reach the point that I can't work I would go on unemployment sick leave for 4 months and then can go on government disability as well as a private disability insurance I have been paying for.  But I need my husband to have coverage at his employer for the other things.

Hope you can avoid any further auto-immune issues.  When the lupus hit my son asked me if he was going to get that too.  I couldn't say no but he does have a 5% chance of that.  He does have sciatica problems so hoping it is not something brewing for him.
Helpful - 0
1288945 tn?1271972452
   Thank you for adding me as a friend, as far as not working I am fortunate in at least that I get enough money to live comfortably on and when I first moved to this town 7 years ago I found an apartment complex where rent is based on income. They are very nice apartments, management maintains the outside and has inspections on the inside of the apartments every few months, no one with a criminal history can live here and there is a grocery store across the street. It is a quiet little town and cost of living is low here also and a hospital 3 miles down the road, drug store 2 miles up the road. The winters are mild. The location is perfect.
  I have found many government benefits and programs that many people do not realize are available which have helped me out a lot and I created a web site with links to these free programs also only to help out others. It is www.freepeoplehelpingpeople.com the previous web site I had for a year was giving me problems but I just created this new on godaddy.com yesterday and the old one is about to expire in a few days.
  A friend of mine found a program on my web site where she can get her medications at no charge, as a result it is saving her $600/month, she couldn't thank me enough. I got free medical insurance, free brand name prescriptions mailed to my home, free transportation to my doctors appointments, free dental coverage, free diabetes supplies including shoes mailed to my home etc..., another friend of mine in Pa is on medicaid and was able to get her cell phone at no charge and a discount on her home phone service through the Lifeline program that she never knew about before.
  On my old site I received many emails and a few guest book signings of people that it has helped, I am just happy I can do some good in the world. It cost me about $50 to create the web site but I don't mind about that, I make no money on it and there are no ads.
  Anyway I am sorry to sway from the topic but I have feared that I may get another autoimmune disease. I admire you that you are able to still work, I understand that Lupus and Fibro are difficult diseases. There are many people out of work here in the Greenville, SC area so I consider myself fortunate in that respect, at least I have a steady income, health coverage and a nice place to live where so many are loosing what they have. And since I live alone and always been single by my own choice, I only had to take care of myself but I have many good friends here in SC that I met from online and a close family.
  I am sure you will do well working again and I hope your hubby finds that job that would help you all out.
  
  
Helpful - 0
483733 tn?1326798446
Interesting what you say about the immune system attacking other areas now that the colon is gone.  I'm feeling the same.  I'm also hypothyroid (thyroid is totally inactive), have developing Lupus that I'm being treated for (joint and muscle pain and fatigue) and have fibromyalgia due to all the surgeries and stresses.  I really feel that when they handed out bodies that I got a lemon.  Wish we could trade them in.

Hope you can get some relief.  I'm still managing to work but definitely have times when I just want to stay home.  Waiting for my husband to get a decent job with benefits and that will give me some comfort to know that should I need to quit that at least we have benefits in place.
Helpful - 0
1288945 tn?1271972452
I never been tested for celiac and never heard of that before but I will ask my doctor about testing me for it. I never heard of a gluten free diet but I will look into that also.
  My weight fluctuates probably due to my hypothyroidism. My immune system attacked my thyroid a few years ago and it had to be radiated. My doctor told me that since my colon could no longer be attacked my thyroid was attacked. When I first got the UC I also got arthritis in my knees at the same time, but that has been in remission since 1983.
  I also have type II diabetes, osteopo pina, GERDS, coronary artery disease, high blood pressure, high cholestrol. My main vitamin deficiency was B12 and I was getting B12 injections since the B12 pills did not work but now I no longer have that deficiency with what I am taking now.
    I have also had a problem with getting blood clots in my legs, and was hospitalized 2 times for that in the past 7 years but I had a total of 3 occurrences of those.
  I was referred to a hematologist and after a number of tests he determined that having the UC increased my likely hood of getting blood clots.
   A clot had gone to my heart in Oct 2007 and my cardiologist put a stint in and I was diagnosed with coronary artery disease.
  My medications cause me to be fatigued often and I have been disabled since July 2002, not being able to work has been a big adjustment.
Helpful - 0
483733 tn?1326798446
I'm the same age and had things done at the same ages as you.  I haven't had any problems with nutrition - I actually have am overweight now and trying to lose.  I do eat very healthy.  So strange after all those years being sick and unable to put weight on.  I do think all the prednisone took a toll on me weight wise.  Have you ever been tested for celiac or tried a gluten free diet?  There is scientific research that has proven that many people with UC fare  better with that.  You might want to do a test run.

I'm also surprised more don't know about the surgery these days.  I wouldn't wait and trust a doctor to suggest it to me.  I did not have a good gastro doc.  He didn't keep good tabs on my disease and let it get out of control.  The surgeon who did my emergency colectomy had heard of the J-Pouch and actually called Mt. Sinai to get advice as to what to do in order for me to have it done later.  I am so thankful for that man.

It breaks my heart knowing I gave the disease to my son.  My doctors told me that it was very rare for a child to inherit it from their parent but that it did have some genetic component.  I am very proud of him in how well he takes care of his body - with exercise and eating so healthy.  I certainly wasn't diligent like him.  He was so disappointed he couldn't have the surgery and I was initially against him doing the Imuran but it has been so successful for him.  Hope it lasts.
Helpful - 0
1288945 tn?1271972452
I was 23 years old at the time in 1983. I decided to have a vascetomy at age 24 since I was so sick from the ulcerative colitis and I did not want to bring any children in the world that might inherit this disease and the urologist at the time agreed and performed the vascetomy. But then I never been married either by chose.
  I did not have to undergo the J-pouch but it was my decision to do so. My gastroenterologist and my primary physician at the time were against the idea as was my girlfriend at the time who was a nurse but I was willing to take the chance, in the 1990's it was a newly developed procedure and I had heard about it in 1989 on a Lifetime TV show called Physicians Journal Update, a doctor Fazio who developed it was one of the doctors on the show.
  I have been in chat rooms on some of the disability web sites and have chatted with people with UC or others that knew of someone who was suffering with it and I was surprised at how many did not know about the J-pouch surgery. But then as you say a person has to fit the criteria to qualify, I fit the criteria on every single point on the check list.
  My understanding is that there are similiar procedures, one involves having to drain an internal pouch with a tube, I saw a video on it years ago but the J-pouch changed my life in a very positive way. I have done many things in life and continue to do so that I would have been unable to do having the disease.
  I have been unable to asborb nutrients very well as a result of the surgery but a liquid vitamin that I have been taking since January of this year has helped resolve that problem. The Cleveland Clinic in Ft Lauderdal paid me to be a volunteer for a day to determine why my surgery was so successful when others were not so successful.
  Ironically the main surgeon that performed my J-pouch was a Dr Jaggleman and he died of liver cancer about a year later.  
Helpful - 0
483733 tn?1326798446
Wow, your dates are very similar to mine - diagnosed in 1983 (22 years old) and then 10 years later my bowel perforated while in the hospital.  Had emergency surgery to remove colon and then a year later had the J-pouch created at Mt. Sinai in Toronto so for me it wasn't really a choice.  It has been extremely successful.

My son was diagnosed with UC 4 years ago when he was 20.  He was very ill and wanted to have the surgery.  His doctor said that because his disease is so close to his rectal cuff that he isn't a good candidate.  Luckily he has been able to go into remission on Imuran and takes extremely good care of himself with diet and exercise.  

I think doctors treat the surgery as a last choice for very sick people providing they fit the criteria.  

Helpful - 0
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