Hi, my husband is having the first of the 3 j pouch surgeries next week. He is extremely nervous and any encouraging words would be helpful. He has suffered from severe UC for about 6 years now. He is 32 and was in great health before being diagnosed. He has been on every medication you can think of. The extreme high doses of prednisone are wreaking havoc on his body. He developed cataracts from them, weight gain/loss, acne, back problems, you name it. He also has been on remicade, which seemed to work for awhile but has been having bad flare ups lately. One put him in the hospital for 34 days. The pain is just unbearable. He is on the highest doses of all the pain meds you can name. His gastro finally said enough and referred him to a surgeon at UCLA. He assured us that the surgery is his best and only option and he will have a better life afterwards. I do believe this but I've been reading on this site about some of the complications that people go through and it just sounds terrible. He just wants his life back. We would like to start a family but he has been too sick. He also has been off of work for months now. This disease is so terrible and as a bystander I really feel for anyone that has to deal with the agony that my husband deals with everyday. If anyone has had this surgery and has a similar situation to my husbands', we would greatly appreciate any helpful information or encouragement going into this surgery.
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Welcome to the site! Your husband's story sounds exactly like mine was word for word. This surgery has been nothing short of a miracle for me. I wish I had done it sooner and skipped a bunch of those nasty drugs, especially the Remicade.
The surgeries are tough but the end result is so worth it. It takes some patience that's for sure. You are such a great support to him by already seeking out this forum. This is a great site. Please let us know how he makes out. Best wishes to you both!
PS- I had some complications too but I would still do it over again in a second. Try not to let what you read scare you too much. It's a very complex surgery so complications can happen. Hopefully they will just be on the minor side if he done have some.
The surgeries are tough but the end result is so worth it. It takes some patience that's for sure. You are such a great support to him by already seeking out this forum. This is a great site. Please let us know how he makes out. Best wishes to you both!
PS- I had some complications too but I would still do it over again in a second. Try not to let what you read scare you too much. It's a very complex surgery so complications can happen. Hopefully they will just be on the minor side if he done have some.
His story is similar to mine as well. I think for those of us that suffered from colitis we all went down a similar path where the biologics eventually fail us and the high doses of prednisone either wreak havoc on the body or in my case don't even work. I had a 2 part surgery both with complications, but as my surgeon said "it's nothing they can't handle." You mentioned a 3 step so I'm assuming he's going in with a severe flare and on prednisone. It will not be easy and with a 3 step I believe the 2nd surgery is the most challenging. Hopefully other 3 steppers will chime in. I'm now 7 1/2 weeks out from the 2nd surgery and life is good again. I'm eating, socializing, starting to workout again. I'm feeling they best I've ever felt this whole year and hoping the improvement will only continue. Stay positive and good luck. Keep us posted with his progress.
I had three step surgery as I was so very sick, underweight, and had been on predinisone and then also IV steriods in the hospital - which didn't work! Then immediately into surgery. He will feel so very much better right away the day after surgery. Sure, there will be gut pain. But I couldn't believe how much better I felt overall.. immediately. I was truly shocked. I was back at work in 7 weeks.
After this first surgery is done, please speak in detail to his surgeon about the jpouch creation surgeries and decisions on these, in particular regarding timing and starting a family.
After this first surgery is done, please speak in detail to his surgeon about the jpouch creation surgeries and decisions on these, in particular regarding timing and starting a family.
Hubby's story is very similar to mine, three steps after being on high doses of Prednisone for a couple of years, the disease overtook the medication and was 10 days off a major haemoridge so for me it was a real lifesaver. Despite setbacks, not with the pouch, but with modifications that didn't work, I would take this op again, anything is better than uncontrolled disease. I was 37 with 2 toddlers, so it wasn't easy, that was 20 years ago, and it was the best thing for me. Its not a nice op, no-one wants to have it done, but really, it'll be ok, any probs and were all here wanting to help. Once its done and dusted you can get on with the rest of your life, good luck to you!! Heather
Like you and your husband i too was very nervous about getting the surgery but it was my only option. UC hit me like a ton of bricks last October and i was diagnosed with a severe case. It seemed like it happened over night and i lost 60 lbs in two months! That is a lot when you are 5' 11" and started out at 155 lbs. I Tried all of the drugs including Remicade (which i was allergic too) and none of them worked except a constant dose of Prednisone. The side effects from the Predinsone were horrible!! They included Acne, severe mood swings, night sweats, puffiness in my face, and even the water in the shower hitting my skin hurt. I was hospitalized 7-8 times in a 3 month period and 3 of those were in ICU. my diet consisted of rice and hamburger, everything else cause horrible pain and bleeding. I was scared because i have a 1 1/2 year old son and my lady to provide for and i could not work during all of this agony. i wasnt sure how i was going to pay my bills and live the active life i was used too. I work for a construction company as a directional driller and i love wilderness hunting and fishing. I thought my active life was over and without a college education i didn't know what i would do for work. My GI finally suggested surgery as my only option and i found a surgeon in Denver. I sure was nervous. When the time finally came i went to denver to get the 1st step of the 2 part surgery done. When i awoke from the anesthesia i had a temp. ostomy and had a little pain. It didn't take long to get used to and i was released from the hospital earlier than expected. I went back to work with the ostomy after 4 weeks and was happy to be able to make some money again. I was nervous still since it seemed like i was having to empty the bag every half hour to an hour. But on the upside i was eating anything i wanted. I was nervous because i thought maybe the output of the bag would be the same as my pouch when it was connected. boy was i wrong! After 3 months with the bag i went back to Denver for the final surgery. when i awoke i didn't have much pain at all and after 4 days i was released from the hospital and made the 6 hr drive home by myself. I only had to stop once to use the restroom on my way home and i had complete control and could hold it for an hour if needed! My frequency since then has been 2-4 BMs a day and none at night. I can hold it for as long as i need to with no urgency. many people experience butt burn but i have not had the pleasure as my j pouch behaves nicely! i was even fly fishing up in the mountain canyons the weekend after surgery. At 3 weeks post takedown i went back to work and all has been great so far! i eat whatever whenever i want but i have been trying to eat healthier just to be safe. I plan on doing some backpack elk hunting trips in a few months and i have totally gotten my active lifestyle back!!! I am so glad i decided to get the surgery and i am currently off all medications. i dont even take anything to slow my pouch down just a probiotic and daily vitamin in the morning. I know reading alot of these posts can make you nervous but as someone had pointed out to me, this is a support forum. most people that are fine with their pouch are out living their lives instead of posting on this forum. that is why it seems like there are a lot of problems with a j pouch when you read others posts. My surgeon said that 90% of the time the pouch surgery is successful. sorry for all the rambling but i hope this helps! good luck and i wish you the best................Keith
Had UC for 23 years, had all 3 of my surgeries at Clevleand Clinic I am now 2 years out never felt better. I had no choice in the decsion to have surgery would have died without it my colon was getting ready to rupture. I am great now. Would do it all over again. It is a long haul and not an easy journey but in the end it is all worth it, at least it was for me. Good Luck!!
To Keith- when you said even the water in the shower hurt- it reminded me of severe pain I would get from just pressing strongly on my rib-cage. My cat would walk on me sometimes and I would scream in pain and it would take minutes to feel normal again. Since coming of prednisone and all the other destructive drugs my chest is 100% better.
To anyone with very severe UC- hospital visits, high drug doses, awful side effects- the surgery is not just the only option- it is a good choice to make weighed against so many negatives of the UC experience. I'm still going 8-10 times a day- and I have been dealing with a little cramping and night-time leakage issues- and I would say without a doubt I made the right choice. Just being able to breath again without pain- being able to control my bathroom timing- and being able to exercise for the first time in years without feeling like I'm going to die afterward is already reward enough. (Though I'm hoping for more as time goes on)
To anyone with very severe UC- hospital visits, high drug doses, awful side effects- the surgery is not just the only option- it is a good choice to make weighed against so many negatives of the UC experience. I'm still going 8-10 times a day- and I have been dealing with a little cramping and night-time leakage issues- and I would say without a doubt I made the right choice. Just being able to breath again without pain- being able to control my bathroom timing- and being able to exercise for the first time in years without feeling like I'm going to die afterward is already reward enough. (Though I'm hoping for more as time goes on)
njwahley,
Your husband's story is similar to mine. I went through all this many years ago. I had UC for 7 years from 1986 - 1993 and the flare ups increased each year. Any stress to my life would cause me great havoc on my body. Without fail, a few weeks before Christmas would cause major flare ups. I know all about those drugs and I hated Prednisone. I too got acne all over my back, head and face from it.
I kept putting off the surgery myself due to my own fears. It got to a point where it was a loosing battle. Prior to my 1st surgery in Sept, 1993, I was so weak from all the pain and bleeding and lack of sleep. I kept going to work, but for the last two months or so, even after a morning shower, I had to sit and rest. By lunch time, my legs began to buckle like a boxer in a ring who got his bell rung.
Because I waited so long, I had to have a blood transfusion, 2 pints. I wore the bag for 7 months. My J-Pouch was created in Jan, 1993 and then I was re-attached because I did not want that bag the rest of my life.
There are complications and I have had a few. The worst being a bowel obstruction. But your story reminds me of where I was and having to live with the J-Pouch is much better then having UC. My only regreat is I shouldn't have waited so long. But that is in the past now.
I assume your husband is going to have the same 3 step procdure as I and many others have had. That being said, after his 3rd surgery, its good to keep a food log and chew slowly. Things to avoid and I was never told are Corn, peanuts, Foods that cause Gas, at least in the beginning. And not to drink through a straw because that sucks air in and creats Gas. He needs to keep himself hydrated at all times.
But for now, take one step at a time. It will be an adjustment for him to get used to but you are doing a great job being so supportive. Mentally, this also takes a toll on you and many patients become depressed because they do not see any hope of getting better.
I don't want to sugar coat anything because these surgeries are really tough to deal with. Its not a walk in the park. Make sure your surgeon informs you of the positves and challanges that can come, like complications.
However, all in all, I have a much better life with my Pouch and I know I made the right decision to have this surgery done.
Rocket
Your husband's story is similar to mine. I went through all this many years ago. I had UC for 7 years from 1986 - 1993 and the flare ups increased each year. Any stress to my life would cause me great havoc on my body. Without fail, a few weeks before Christmas would cause major flare ups. I know all about those drugs and I hated Prednisone. I too got acne all over my back, head and face from it.
I kept putting off the surgery myself due to my own fears. It got to a point where it was a loosing battle. Prior to my 1st surgery in Sept, 1993, I was so weak from all the pain and bleeding and lack of sleep. I kept going to work, but for the last two months or so, even after a morning shower, I had to sit and rest. By lunch time, my legs began to buckle like a boxer in a ring who got his bell rung.
Because I waited so long, I had to have a blood transfusion, 2 pints. I wore the bag for 7 months. My J-Pouch was created in Jan, 1993 and then I was re-attached because I did not want that bag the rest of my life.
There are complications and I have had a few. The worst being a bowel obstruction. But your story reminds me of where I was and having to live with the J-Pouch is much better then having UC. My only regreat is I shouldn't have waited so long. But that is in the past now.
I assume your husband is going to have the same 3 step procdure as I and many others have had. That being said, after his 3rd surgery, its good to keep a food log and chew slowly. Things to avoid and I was never told are Corn, peanuts, Foods that cause Gas, at least in the beginning. And not to drink through a straw because that sucks air in and creats Gas. He needs to keep himself hydrated at all times.
But for now, take one step at a time. It will be an adjustment for him to get used to but you are doing a great job being so supportive. Mentally, this also takes a toll on you and many patients become depressed because they do not see any hope of getting better.
I don't want to sugar coat anything because these surgeries are really tough to deal with. Its not a walk in the park. Make sure your surgeon informs you of the positves and challanges that can come, like complications.
However, all in all, I have a much better life with my Pouch and I know I made the right decision to have this surgery done.
Rocket
Njwhaley, it's a pleasure to meet you & your husband.
The nerves are entirely understandable; it's major surgery
that does have it's risks; as you've found from reading
the posts in here. But don't let them deter you. Instead,
let them inform you and arm you with questions to ask
the surgeon and the confidence to ask them.
As for me, my UC story is sadly similar to your husband's
and others posted here; diagnosed a year out of college;
fought it for 4 years with Prednisone (all that was available
at that time); and finally succumbed to surgery. Fortunately, it
all worked out. It literally saved my life (I had toxic mega
colon by the time they did the surgery). Like your husband,
I was blessed with a wonderful wife that helped get me
through it. :-) We've since gone on to have 3 children,
travel the world, and do all the things we love.
Hang in there; it's a tough row to hoe; but you will
get through it with the help of your new friends here.
Prayers & Best Wishes, Steve
The nerves are entirely understandable; it's major surgery
that does have it's risks; as you've found from reading
the posts in here. But don't let them deter you. Instead,
let them inform you and arm you with questions to ask
the surgeon and the confidence to ask them.
As for me, my UC story is sadly similar to your husband's
and others posted here; diagnosed a year out of college;
fought it for 4 years with Prednisone (all that was available
at that time); and finally succumbed to surgery. Fortunately, it
all worked out. It literally saved my life (I had toxic mega
colon by the time they did the surgery). Like your husband,
I was blessed with a wonderful wife that helped get me
through it. :-) We've since gone on to have 3 children,
travel the world, and do all the things we love.
Hang in there; it's a tough row to hoe; but you will
get through it with the help of your new friends here.
Prayers & Best Wishes, Steve
I'm through the first two surgeries of the three step process myself. My 3rd step is scheduled for October. I can confirm what others have said here about living with UC being just awful. I can also confirm that it will get better. I feel loads better just being 2 steps into the process, and I say that even though the 2nd step has been a bit of bear...it seems anything is better than living with UC. However the great news is that the vast majority of people do very well with their pouches once they are recovered and healed from their 3rd surgery, and I believe I will be one of the majority when my time comes, too. Just know that this is a good place to meet people, gather ideas, and sometimes just express what has you or your husband bogged down at the moment. I will be thinking of you both, and praying all goes as smoothly as possible.