Questions from Partner of J-Poucher

It took me months to be able to totaly get out of bed on my own. I have a 27 staple long incision and a 4 staple stoma site. Its been 8 years since my takedown and I still go potty 20 plus times a day on a bad day. On a good day around 10. It is most definitly diffrent for everybody. Diet is really the only thing I have found that helps the most amount of symptoms all at once. I would try no gluten and absoulutly no fast food!! I couldnt eat anything easy after my takedown ( well I still cant, but that could just be me). No pizza, no frozen dinners, nothing of that sort.
I have found with this condition at least for me, life will never be the way it was before. There will always be things you have to remember or be in the back of your mind. The j-pouch isnt a cure all. For me it just slowed things down. I did have sever UC for 6 years before I started the process. My whole large intestine was completly full of polyps. The doctors couldnt understand how I didnt have cancer or how I was even still alive at under 90 pounds. The best advise i can give is dont just do what the doctors say. You have to educate yourself on all areas and ask lots of questions. This site is wonderful for that. There are some truly amazing people on here that have seen and been through things i couldnt even imagine. Its a stressful time, but she will adapt. You just cant think everything is going to go back to "normal". Cause normal isnt the same anymore.

Firstly, bowel reconstruction and j-pouch construction and reversal are very different. Depending on the amount of bowel removed, a reconstruction can be pretty straight forward.

Secondly, there are many variables that could make her recovery more difficult than other people. It was hard to tell her chronology from your description. When was her reversal? It sounds like she had additional surgery beyond the normal two or three. Extra surgeries automatically increase recovery time.

Before developing pouchitis, I had an average of 6 bowel movements per day. That is very unusual. With the pouchitis, it jumped up above 20+. BUT I am sixth months out from my reversal without any internal complications. I had three surgeries with the removal of seven organs.

What does her doctor say? It sounds like she needs electrolytes, liquid vitamins, minerals and a low residue diet plus a binding and slow motility agent. As gross as it is, a large jar of Gatorade a day may help her energy level a lot.

I like Questran for a binding agent and Immodium to slow down the intestines. I take a liquid vitamin plus 5000 IU Vitamin D per day. What works for me may not be right for her. She should check with her doctor before trying new things.

Prescription Zofran can help with the nausea. What is she doing for pain management? Many of the pain management meds also slow the bowel down. I take half a dose of Oxycodone (2.5 mg) every four hours for pain. It is enough to dull the pain but still think clearly. Epsom Salt bathes and a heating pad also help with the pain. I would not recommend the bathes if her incisions are not completely healed.

Is she following a low residue diet?

Recovering from the j-pouch surgery is like being in a war. Every day you are exhausted from fighting so hard just to survive until one day you discover that things are improving and that the catastrophes are fewer and fewer. Finally, you have a day when you have not thought once about your j-pouch and you start to feel at peace with the changes in your life and body.

Recovery is a roller coaster of ups and downs. Plan for the downs and celebrate the ups. She will get better but it will be rough in the beginning.

There are very few of us that do not get better and live active and long lives. It is still too soon to tell what her future will be.

Please be patient. Silly things my husband did that helped: Epsom salt baths with scented candles, foot massages, bringing home a single rose, not taking my complaints and pains personally because he knows sometimes I need to vent. Before I felt very well, he made me walk at least a block every day. On Dec, 2 I completed my first half marathon.

We have many people on this site active in karate, rock climbing and white water kayaking. Having a j-pouch has not stopped many of us from continuing as doctors, lawyers, writers, nurses and many other competitive careers.

Statistically, she has a great chance of having a long and fulfilling life. Hang in there and believe in the best of futures.

Szm

great summary and advise from szm..

if i understand you she had stoma and than a take down9went to jpouch?

i can say after my operation i was told 6 months at least ..and i had various things to get me through some of the worst..in my case it took me 2 years to finally get a grip on it by finding the right things to do..but even with the best of situations after this operation which is major,major,major.. there is no such thing as 3 weeks or a month recovery..

szm sounds like she has a wonderful husband and i do too sounds like you are doing a good job too..hang in there for her and you..my life is pretty good now..i am very active..workout almost everyday at gym and zumba classes..i have a new normal but it works..people on site get married ,have kids,work and so on...its way to early to think the worst..

rebe

One of the hardest things about the J-Pouch sugery and recovery for me was watching my poor Partner suffer, it just broke my heart that I couldn't just wave a magic wand and take it all away from him.

He, like you, just wanted me to get better and could not understand the rollercoaster ride of ups and downs. He also found it hard to accept that there was no quick fix. To he honest, it did put a huge strain on our relationship.

I have a similar outcome to your girlfriend, my 1st sugery was in May this year and takedown in August. However, I had disabling UC and related sacro-ileitis for 33 years, so I at least can see a huge improvement to my quality of life now from before the op. I would imagine your poor girlfriend has a much poorer quality of life than before, which must be awful.

It is still early days and I hope your girlfriend continues to improve. It is definately a very slow process. On the tiredness front, have they checked her iron levels? Mine got very low and improved after an infusion. Also, dehydration affects me so I make sure I drink plenty of electrolytes.

Please please remember to take time to look after yourself too. Have some time to yourself, I had to push my partner to do this but it definately helped both of us.

We have now reached a point where we both accept each day as it comes and make the most of the not so bad ones. I hope and am sure I will improve, but if I don't we will just have to work life around it. Life just will never be the same again.
Caroline

Hi All

And thanks for the replies. I meant to come back and post earlier but been a busy time of it but here's the update. Things are - from my point of view - slightly better, although still having to go to the toilet very frequently, plus itching, rashes and bum hole pain in general as it (very very slowly) builds up tolerance.

She is putting on weight, which I might see as a good thing! It's been 3 months since last op and have been told it can take up to 18 Months to get to any form of normality. I know that it will never be back to a normal "normal" but hope for the best.

I do hold some fear for her future because it seems like the current rushes to the toilet are going to be the norm rather than the exception, and it just seems to be affecting her whole lifestyle and now seems like her demenour is changing slightly for the worst.

That's about all I can make of it just now.

G

Has she been seen by her surgeon or GI doctor since her last surgery. Has she had a scope done? She could definitely have pouchitis or something that needs medical treatment. Many of us were privileged to have pouchitis and cuffitis immediately after takedwon. If she really has that much urgency, I suspect that there is something wrong.

I don't think it is right that people say always wait wait wait.. things will get better. Because if there is something medically wrong, then medical help is needed.

Hi Liz

She hasn't had a scope up the butt since I don't know when, only recently had one into stomach to check some polyps there.

Had a check up with the surgeon about month and a half ago. I'm not usually there so don't know exactly what they said or advised her. I think sometimes she tells me things that maybe aren't so important but leaves out the things are important and I can help with, maybe about advice for diet etc. She is a slacker with food and doesn't listen at the best of times, and is obstinate.

She has been getting better regarding toilet visits and the sudden toilet pangs are not so frequent but can come on sudden. It generally starts with wind pain in the front then has to go; i've had that myself so know the feeling, it's like you have the runs.

It's a bit of a bind as we meet up on Saturday and I get to hear and see all the groans and hear all the pains. I know it's not her fault but it's just a bit depressing hearing it over and over. In saying that I do not want her to keep it in, but then I get the full load from her.

Not sure if there is a support group about her area that she could visit and let rip to like minded people.

I also think visiting a nutritionist might be a good idea. Also meant to say she was saying she was having dizzy spells but mentioned something about vertigo she had previously but not sure.

G

I don't have much to add other than it can take a full year to really recover for some of us. Emotionally as well as physically.

What I really wanted to say is YOU ARE AN AWESOME BF in that you are searching for answers and caring so much that you want to help her through this.

I would have NEVER made it without my husband. Was it rough? Yes. Was it worth it? Yes. He patience and caring of me only brought us closer.

Well done and thank you from this side of the pouch.

quote:

I don't have much to add other than it can take a full year to really recover for some of us. Emotionally as well as physically.

What I really wanted to say is YOU ARE AN AWESOME BF in that you are searching for answers and caring so much that you want to help her through this.

I would have NEVER made it without my husband. Was it rough? Yes. Was it worth it? Yes. He patience and caring of me only brought us closer.

Well done and thank you from this side of the pouch.

Thanks I want to help and I do help it's in my nature. I only met her shortly before she got the news so could have walked, she thought I might. Guess that's a good thing from her point of view. I do still moan at her as she is a bit sloppy in her ways and been a bit slack in her ways recently so need to get her back on her feet. I know if you are ill it can be easy to let things slip but that's not good for the mind body or soul!

It's very depressing to go through. It is a disease and surgeries below the waist and people don't want to talk about it and hardly anyone knows about it. Ask them about FAP and you'll bet blank stares. She should have better control than she does so she could have a problem like pouchitis or and infection like c-diff. Lucky for her she won't get cuffitis. Is she taking anything to thicken her stool like Metamucil and Imodium? Those are very helpful.

It's hard to explain how we feel because then you guys think we are complainers but if we don't then you think we are lazy because we aren't moving much and don't want to move around much. It's a delicate balance.

Is she seeing a therapist that deals with chronic illness or is she taking an antidepressant? There is a mind and gut relationship and for a lot of us we will need to take an antidepressant the rest of our lives because part of what we needed for the mind was lost when we lost our colons.

Take care and remember it's hard on you too. My husband has been great but he gets frustrated at times.

My husband has a pouch and it has been a difficult road for both of us. It is hard to see your loved one go through such pain and agony for solo long. My husband had his colon removed in Aug 2012 and first was able to have his take down on Christmas eve. We are slowly starting to figure everything out. He is still tired. Not a lot of energy. Chronic pouchitis. But we are starting to have more good days then bad days. This website has helped us greatly. All you can do is be positive and live each day one at a time. She is lucky to have you!