Help!

DH has had severe Chron's disease for 40 years.  Numerous abdominal surgeries, rectal surgery and he has had two abdominal fistulas, necessitating ostomy appliances, for about 5 years.  The latest development has been fecal incontinence during sleep.  As if this disease has not done enough damage to him, and to us, it seems it just keeps on "giving".  I know many of the subjects related to this chronic disease are not pleasant and not easy to discuss, but I am wondering if any one else is experiencing this and how you handle it.  There doesn't seem to be any "good" product available.  Thank you if you are willing to share or just sympathize!

I know someone on the lupus forum was experiencing this problem a few months ago. You might like to pop over there and ask your question too, as the lovely people there might be able to remember who was experiencing this. I know they offered a lot of helpful advice at the time, so maybe they will be able to refer you to the right person so you can find out how they learnt to manage (or even fix) this problem.

All the very best to you and your husband.

Ivy.

I'm sorry you are going through this. My husband too has crohn's disease, and it sure isn't fun. I can certainly identify with where you are. When my husband was really badly off, he didn't know that he was having a bowel movement - it was so liquid, and he was just so tired, he didn't even feel it. And his poor bottom was so chaffed from the constant going to the bathroom, I felt he really needed cotton clothes, and being aired out, instead of wearing diapers. I know, this is probably too much information, but I do get where you are.

When my hubby was going through this, I used super absorbant disposable pads over the bed (with a plastic liner underneath - I had several of these, so I could wash them out with bleach and hot water). I made sure the plastic liner was all the way tucked around, so it wouldn't get on the sheets (so there was a plastic liner from his chest down to his knees on top of which was the absorbant pad). Also, he is a side sleeper who likes a pillow between his legs - so I covered the pillow with a thin plastic liner (bought several at bed bath and beyond), and put the pillow cover on top of it. I could spray the liner with bleach and keep it clean. At worst I had to wash/toss out the pillow cover. I also found these disposable wipes - that are made for a french bath (I think I found them at walmart) - you can warm them up slightly (or not) and use it. He used this to clean up when he was too tired to shower. If he woke up at night with a mess on the bed, it was easy enough to just whip the soiled pad into the trash, and put a fresh one on, and hand him the french bath sheet (or 2) to clean up, wash hands, and go to bed again (if you could).

I bought about 20 cheap very light cotton shorts (with drawstrings - he said it hurt to wear something elastic) and washed them in very hot water and bleach, and ran the washer empty once a week, on a very hot cycle with just bleach. Not perfect, but it worked for the few weeks that he was hurting. And of course, a complete must - a trash basket that closes all the way, and I took the trash out twice a day. I also washed the sheets on the bed daily - when he woke up in the morning, and went to the bathroom etc, I changed the sheets out, and put them in the wash, and made the bed, with the fresh liner, pad, etc. There was lots of laundry being done when he was having incontinence issues.

I hope some of this helps. I don't know about using immodium - his doc just didn't want him to do that - since my hubby was suffering from c-diff. I've heard questran can help solidify things a little as well. It may help to ask his GI what he thinks. It sure isn't easy is it?

I hope it gets better.

((Hugs))
PV

It sounds like his quality of life (and yours) is pretty bad right now. Is a temporary ileostomy an option? I've heard a lot of people's lives improve (maybe not general health, but at least this kind of stuff) after having that surgery. Maybe giving his colon a complete break for a while will help?

I'm guessing he's already tried all the biologics with no benefit (Remicade, humira, cimzia) in conjunction with MTX, Imuran or 6-mp? If not, I highly recommend giving that a shot.

Also, maybe TPN is an option? Giving his bowels a break seems like it maybe a good idea. Is there maybe a trial that you can try - like for vedolizumab? Don't give up! I sure hope it'll get better.

(((Hugs))).

PV

You have certainly been through the wringer! I've heard some people claim that Cimzia is probably the most effective of the anti-tnf agents - that it works a little better than Remicade and Humira. Maybe you can ask his GI about that.

I've heard an enteral diet (liquid) like on ensure is almost as effective as steroids - maybe that's something you can give a try to give his bowels a bit of a break?

Also, some people report success on methotrexate. At this point, I'd recommend perhaps asking your GI about enrolling in a clinical trial (phase III trial of either vedolizumab or prochymal) and see if that will help.

My heart goes out to you. I can't imagine how difficult this has been both emotionally and physically for both of you. (((Hugs)))
PV

I just want to say thank you to those of you who have posted with your suggestions and messages of support!  It is truly appreciated!  We all know much of the dealing with this disease, (as well as others), goes on behind closed doors.  When dealing with a chronic illness, family and friends soon tire of hearing about your illness and much of the subject matter is not exactly dinner table talk!  As the years go by, and the disease itself or the effects of having had the disease for years, takes it's toll, you find that your circle of friends grows smaller and smaller.  It is so nice to be able to post on a forum such as this and find true support!  God Bless!