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life after surgeryIbegan having symptoms in 1987. I had the diarrhea, night sweats, loss of energy ,weight loss and abdominable cramps. At 15, this was scary. my parents did not understand. I was written off as lazy. It was not until i went shopping with my mother. Being a nurse, she saw how much of my weight I had lost. I was taken to the doctor. at first i did not want talk about my symptoms but i told the doctor about my symptoms. After several test, i was diagnosed with crohns disease. he and my mother clashed about my diet. my mother wanted me to stay on diet but the doctor advised us that i could eat whatever i wanted. after years of setbacks and pain,I had surgery in 1990.  The doctor told us that eventually i was going to have surgery. I had portions of my large and smaller intestine removed. I am not going to lie. I was afraid about having the surgery. Praise God  that I have been symptom free for 19 years 1 month and 8 days!!!!!!!!! I spent 2 months recovering . To all of those suffering with crohns and colitis, I say  explore all of your options. Here in alabama, I have ran into people who have been diagnosed with crohns and feel like thay have no hope. I was treated at in Gainesville, Florida. The best Gasto-Intestinal Unit in the Southeastern US. Of course I am biased

 Reply posted for Cappy.



Cappy:

My thoughts and prayers are with you and your son. Please reassure him that a far better life awaits him.

I was 23 when I was first diagnosed with UC. I hung on for four years trying various medications (prednizone...yuch!) but ended up having an untreatable bout and going through the J-pouch surgery. That was 20 years ago last summer. Since then my wife and I have had three children, I work, I participate in all my childrens activities (sports, scouts, camping, etc.), I go to sporting events and concerts, I ski, I golf, I exercise (swim, run, lift weights), I travel (even internationally with a little planning); all the things a "normal" person does; and most people have no idea that I was ever very ill as a young man.

There are some very good posts on this site that can help you and your son with your present situation in terms of getting through the surgery. Mine was so long ago that I just dont remember the details; thats a good thing! :-) One thing I can tell you is the second surgery (the take-down) is A LOT easier than the first (I too was deathly ill going into that one).

As for long-term life with a J-pouch, I've posted I few things on other threads herein (e.g. number of stools/day, diet, use of ointment, etc); please check them out. In summary, though, the best outcomes of the surgery for me are (1) no more medications; and (2) I am now in control of when I go to the restroom; no more urgency of having to go "right now!"

If you have any questions, please dont hesitate to ask/post.

God Bless

 Reply posted for CarianneCianci.

Thank you for your positive words. My 23-year-old son just had his colon and rectum removed a week ago. They constructed the J-pouch at that time. I want to hear encouraging words that I can give him. I also want to hear the truth about issues he may face, so we can be prepared. He would not have lived without the surgery, and we are grateful. Thank you, everyone of you who has gone through this, for being strong and brave.

 Reply posted for porgie71.

i would have to also agree with the j-pouch. it hit me hard and fast when i was 16 and months after had the surgeries and had a few complications and for the most part, things have been great not having to deal with the pain and going to the bathroom and eating just about almost what ever i want.  i just could not give up my popcorn, it is my weakness.  i am also on the remicade for over 9 years, and to anyone that is not dealing well with symptoms and pain and meds to think about the surgery.

 Reply posted for porgie71.

I agree! I was diagnosed at fourteen, and I only had Colitis for a month when i had my colon completely removed. I can honestly tell you that this surgery saved my life, and if I didn't have it i would have surely passed away. I recommend this surgery to any IBDer who is not responding to their meds anymore, and is just miserable. My doctor told me a few months ago that I had the worst colon he had ever seen in his career as a doctor. I can tell you that J pouches are ten times better than having all of that pain.
-Carianne.