Worried about my fiance....

I sleep on bed an a washable underpad every night.  It saves me from washing the sheets all the time. I don't often leak but when I do it seems to occur for a while and then not happen again for months. My husband and I both were using them after his prostate cancer surgery last fall. I love them and they are more comfortable than towels for me - it might be because there is the added benefit of it keeping the sheets clean.  Here's a link about them.  They wash up nicely too.

 

http://www.amazon.com/s/ref=nb...le+under%2Chpc%2C277

 

If he isn't having any other problems - like increased frequency during the day etc, then you are probably right and he is just not managing his eating times.  Being under a lot of stress also plays into things as well.

 

Is his GI an IBD specialist?  My local GI referred me to Mayo's when the normal treatment of my then problems didn't work.  He said he was a generalist that dealt with the entire GI tract and that I needed someone specialized.

 

Congratulations!  (Planning a wedding is REALLY stressful too.)  It sounds like you two are really in love.  He is fortunate to have you and your concern about his health 

 

 

dhan, he's very lucky to be with you. This is not normal J-pouch functioning, particularly when it's a change. It's true that some J-pouchers have nighttime leakage even after proper treatment, but failing to bother to try treating it suggests that his doctor is an idiot and needs to be replaced. In addition to treating his probable pouchitis, he might want a bowel slower at bedtime. I take Lomotil at bedtime, but some prefer Imodium.

 

This isn't his "fault," but it does sound like his eating habits may be making things worse. If he's willing, perhaps he could shift some of that food bulk to a bigger breakfast. I've never seen anyone here recommend a giant feast at bedtime, though a *small* meal is fine for many. The food residue has to go someplace. Eating habits are tough to change, though - is he willing?

Does he empty his pouch just before bed whether he feels the urge to or not?  Just as a precaution....

Thanks all for your replies! I try to make "healthy" meals, he just seems to never be full. I've seen him eat an entire box of spaghetti before! And he's of course, very tiny. Doesn't gain weight at all. To give more background, he will work, get out at 6:30pm, goes to the gym and comes home around 8:30 pm and feasts. I understand to a certain extent, because of course whenever I work out I come home and have a large appetite. I also try to pack him a lunch for work, because I know if I don't he doesn't eat which maybe leads to binging later when he gets out. I think maybe if he planned his meals more, it might be easier. But he just eats, a lot. I never hear him say "I'm full." I can't convince him to get a new GI  doctor. He moved around a lot with his father, and has gone through so many doctors because of it, so I think it gives him anxiety. But I'm really just not impressed...even my mother who took him once for a procedure didn't care for him. I guess at this point there's only so much I can do. I don't want to be one of those nagging wives, but I'm just worried about his health. Again, he's OK during the day, it's just a night time problem it seems. And he does stay up to try to use the bathroom before he goes to sleep, but he still seems to have an accident once a night.

Ideally embarrassment isn't where it stops. It's useful only if it drives the question "what can I do about this?" He probably doesn't have to live like this, but he may not be willing (or ready) to do something about it.

 

It's tempting to blame his eating, but if he's not gaining weight he probably needs the calories. If his eating habits haven't changed much, but his bowel habits have, then you probably won't fix it with dietary changes, and you may not even help it much.

 

BTW, I have no idea what you mean by "healthy" meals. Everyone seems to have different food tolerances, preferences, and (especially) beliefs. For example, some J-pouchers are able to keep pouchitis at bay (or under better control) by nearly eliminating carbohydrates from their diets.

Couple of things:
Is he on this forum? That might be a good suggestion for him. Also I can't help but wonder how he might feel knowing you are posting about him. I think communication between partners on this is critical for a good relationship.

Lots of jpouchers as well as uc sufferers behave differently with food than those who don't have an illness. It sounds like he's abstaining from eating all day as a coping strategy. Preventing an accident during the day is important for us. Sometimes that means little food and fluid until you are home and near a private bathroom. The overindulgence at night makes sense if he's not eating all day. It's working to avoid accidents but causing night time issues.

If it's not a problem for him then I wonder why you are posting on his behalf? If it is a problem for him then this is his journey. Support him and love him. This illness is chronic and difficult but you must accept that you cannot cure it. No one can.

I would definitely locate another doctor who has j pouch experience and get a “second opinion”.  Your fiancé can then decide if he wishes to make a change from his current doctor who does not seem to be effective in dealing with his current pouch problems.  Another thought is to keep a log of everything your fiancé eats and note the results.  He can then alter his diet to what produces the best results, particularly with the evening meal and snacks.  I found that eating a light supper well before bedtime reduced my nighttime problems significantly.

I guess what I mean by healthy meals are home cooked healthy meals. I know what foods to avoid for him. My fiancé doesn't cook at all, so when he does prepare food it's frozen meals, pizza, subs...lots of processed, high in fat meals. Again, I don't know enough to know what's good/bad for him in regards to the pouch,
But I know from eating those types of foods, I myself have problems afterwards. As far as communication goes, we do talk, all of the time. He actually knows I am on the forum and am concerned about him. I wouldn't be posting on this if I felt it would upset him. I'm just trying to reach out to others who may have this issue to see what could help it. He isn't obstaining from eating during the day, he just never prepares meals for himself. I know sometimes at lunch he will go out with a friend from work, but most of the time his job is hard to leave site so he just doesn't eat. He's never had an accident during the day (at least for the years I've been with him.) I know this can't be cured, I'm not trying to find a cure for it. But in the years we've been together, he's never gone 3 weeks, every night, having these issues. Just trying to get perspective, as I believe it's the foods he's eating, the amount, and the time of night. But I was also worried it could be pouchitis that I'm now just learning about.

Thanks for all the help.

IMO there is nothing wrong with her anonymously discussing her fiance's j-pouch here.   There are and have been many people on here discussing their children, spouses etc.

 

I joined a Prostate Cancer Group when my husband was facing cancer.

I think he most likely has pouchitis. Leaving it untreated makes no sense to me.

I tend to disagree about the pouchitis.  If he's fine all day and without issue, one nighttime accident doesnt seem likely to be pouchitis. 

 

While I am continent and do not have nighttime accidents, if I eat late, or indiscriminantly, I face a bathroom trip around 1-2am.  If he has less sphincter control, or is a super deep sleeper, and he eats enormous amounts of food late in the evening, I think you might be right that there's some dietary involvement causing the seepage or accident. 

 

If he's that bothered by it, he would have to be willing to change his habits to give it a test run to see if things could get better by eating less in the evening, or choosing wiser meals.  I think that's the only way to rule out food = the issue. 

 

Agree about potentially trying a new doc, too. 

 

I suppose, though, he might see if a physician would order a trial dose of antibiotics like Flagyl or Cipro, in *case* it's something else. Cipro for me slooowws me down, though,  so a decrease of stools with an antibiotic can = constipation side effect, but certainly not always. 

 

 

Rachel, the OP wrote "for the past couple weeks, it has happened once a night."

 

It doesn't sound like his dietary habits have changed appreciably. Just his accident rate, from rare to once nightly. If I haven't misread something, *that* sounds like pouchitis.

Well, the few times I've had what was suspected to be pouchitis, I had urgency and issues 24/7, not just a specific time of day. So that's where I was coming from.

Each of us notices (and fails to notice) different things about our bodies. For me the nighttime "events" tend to be the first pouchitis sign I can't explain away or fool myself about. Even if things are a bit worse during the day, I've had the experience of not noticing/acknowledging worsening daytime pouchitis symptoms consciously for *months*. A messy bed isn't ambiguous at all.

 

My personal approach now is that a single event puts me "on alert." A second event in close proximity puts me "on high alert," and I reassess whatever I might have been ignoring in the daytime. A third event means I probably need new/different treatment. I wish I were self-aware enough to notice smaller degrees of worsening.

 

Sometimes I will have more accidents at night when my body is worn down and I know this is one of my first clues to get a little extra rest. If he has picked up a second job, he just may be pushing himself more than usual? It may be that he has also developed a bit of a stricture? this can also cause this for me sometimes. Just a couple of different ideas.

 

Good point. I missed the 2 job thing. Perhaps he's exhausted, and the very large late meal is pushing him over the edge?  I still am not 100% I'd be convinced it was pouchitis.  I suppose I'm a lucky poucher who rarely gets bothered with that (my 2012 issues were likely due to a lot of NSAIDS).  Maybe I'm just naive to what most get as symptoms when they have it or something, because of that. 

Guys we still haven't heard from the patient himself so we really don't have the whole picture here.

I just thought there was a friends and family discussion board and this one was for patients and pouchitis.

@katenet,

You've made some good points, especially about how we don't each much during the day so we won't have problems then.

 

I don't know why it bothers you for her to ask questions about pouchitis in the "pouchitis" section.  There is a family section but I think that has more to do with how to deal with the family members/care takers issues since a loved one is ill.

@te Marie thanks! I've  had this for a very long time. it's just my opinion is all. Aren't we all posting our opinions?

Personally i wouldn't want anyone posting about me (that I wasn't married to) without my permission. This is private stuff. Patients themselves get to determine what is shared and what is kept private.

when you have a loved one who is "ill", wouldn't you want to research as much as you can about their condition/illness so that maybe you can offer them some constructive advice from those who have walked the path?

 

While I am no longer married, I do know that my husband would never have participated on a forum, done his research, etc.  He would have had me do it for him, just like I was his social secretary, vacation planner, medical / dental appointment maker, banker, tax preparer, cook, housekeeper, and all around general assistant.

 

He was so "form" phobic, that I eventually had to fill everything out for him and just point on the dotted line and told him to sign there.  He trusted me, my advice and opinion, because he knew I did my homework/research.

Neither I nor my husband would care if the other researched issues one of us was suffering.

 

Also, it's not like she said, "My fiancé, John S. Smith of Littletown, AK, USA, who is a manager at the local Barnes and Noble, is having nighttime accidents, what do I do?"  No real personal data is here. 

 

What about mothers posting or asking questions on their kid's behalf?  Sharon talks of her hubby's issues in France... I've offered suggestions about arthritis because my hubby has psoriatic arthritis... I don't think it's unusual to seek information to help the ones you love. 

Just to make it clear, this thread is in the appropriate forum. Friends and Family seems to be more of a social meet-up sort of place. For specific advice, it is best to post in a specific forum. We are here for support directly or indirectly.

 

Also, it is fine to be posting on the behalf of a family member or friend. It is between them as to what is or isn't OK. It is not as if she was trying to impersonate him.

 

Jan