I can't take this drama anymore. Chris has pouchitis. He is impatient and frustrated but brings on his problems.
I just discovered this morning that he took 4 bottles od liquid lomotil over the past 2 weeks(boxes empty in trash)2 bottles missing, he says they are gone! as these last string of problems with intubating have started.
He said he's ready to go back to an ostomy.
I know he will not be any better off with that and could end up with short bowel syndrome.
I don't know what I can do any longer.
I want to run away and be alone. I want to cry as I have done so much and all he does is LIE.With the current pouchitis and he still has problems getting the tube in I see why now.
Thanks for letting me rant.
I had to say good bye to my 86 year old social worker yesterday as she moved to Michigan. I am grieving my own loss and lack of someone to talk to now.

This message has been edited. Last edited by: "Holly2",

You poor thing. Holly, I don't know everything that you've been through even though I've followed your posts over the years, but I know you've had lots of problems with Chris' condition, and I know that you have fought tooth and nail for him to get better. And that is a wonderful thing and what a mother is supposed to do for their child - he is very lucky. He's a teenager, right? Therefore he knows everything and you don't and you're just being a nosy nag. Add to that that he's taking you for granted - many times we take for granted the people closest to us who do so many things for us. Everyody does this. I say grab the kleenex and have a really good cry - you deserve it. Perhaps this isn't the best advice but maybe you need to step back for a while and let him be responsible for himself come what may. Then he'll be able to see for himself what he needs to do to get himself better and keep it that way.

I'm sorry that you've lost your social worker to another city. If you have her phone number then perhaps she could recommend someone else in your town that you can talk to. Another thing you could do is keep a journal. I have always found that being able to vent on paper has helped me. After a couple of years you can look back and see how things were and how you have progressed and learned. In the meantime there's all of us here.

Hang in there, Holly, it will get better.

Suzanne

Holly, I'm so sorry this is all happening, it must be very draining on you both. Disregard this if you don't feel its a good idea, but has Chris ever been in counseling?? It seems like after the fact, he can always identify the wrong choice, just not before. It seems he can't understand that he can BENEFIT from making the right choices. He can feel better, the k-pouch will function better, if only he could get that he will be better off by doing the right things. The same gratification he gets from drinking the soda or eating the wrong thing that tastes great, he could get from treating his body right and feeling better. It just takes a little more patience to get the gratification. I hope something changes soon for both of your sake, you both deserve a break.
Best of luck to you, I hope things start to improve,
Cheryl

Holly, I don't have any advice for you but just wanted to offer an ear and a shoulder to cry on. Having brought up 2 teenagers myself I know just how difficult they can be and that's without the health problems that Chris has.

Take good care of yourself too, I know how draining this must be for you.

Shell

I am a little at a loss of words right now. I can sort of understand what was going on, if Chris is anything like my youngest son, Nick. Nick is an open book when everything is peachy. But when something is haywire because of his own lack of attention, he hides it from me and the rest of the family. He will try to fumble around to fix things, but just makes them worse. Part of it I think is his desire to not have me control him or do the "I told you so" routine. The other part is his lack of insight and planning that makes him feel that we will think he is inferior for it. He is 20 years old and still pulls these stunts.

It is so frustrating as a parent to see our kids make foolish choices, when we have given them such good guidance. We tell them over and over, "Come to me if you are having trouble and I'll help you work it out." Instead, they just sweep it under the carpet and hope it goes away. I guess some kids just take longer to mature.

Of course, pouchitis is not the end of the world. But he needs to get treatment for it sooner rather than later and know that you cannot cure it with Imodium. Of course, even after the pouchitis is taken care of, it is possible that he might need a maintenance dose of Imodium to keep things simmered down. Some people just have a very active gut.

Sometimes the only thing you can do for your kids is be there to pick them up when they fall. You can't run around with a pillow for them to fall on. But, how do you keep from going crazy while you watch them fall?? I don't know. Let me know when you figure that one out. At least you can come here to vent.

I was wondering...can they convert a k-pouch to an end ileostomy without removing the pouch? That would at least preserve the small bowel there.

Jan

I'm so sorry Holly. I don't have any real advice for the current situation, but know that I feel for you and the struggle you are up against. I know how I reacted to my MOm's help when I was sick and I was 26. All I can say is that now that things are good, I could never have survived it without my Mom's relentless pursuit of answers and I am so grateful to her for being who she is...even though I resented it and rebelled against it at the time.

I was just talking with my Mom about issues she's having with my brothers (not GI related) and I was talking about a book I read when I learned I was having a son. It is called "Raising Cain - Protecting the Emotional Life of Boys" I found it fascinating to learn about how boys think and what motivates them. There is a whole section on lying and why boys do it... Might be worth a read for anyone with sons...

This message has been edited. Last edited by: JillM,

Thank you all ever so much. As always I don't know what I would do without this invaluable support.
Jan,
The nurse suggested a temporary diversional ostomy, stoma on the other side, leave everything in tact just disconnect the valve? I think.
I have to talk to Chris.

Cher, Chris has refused counseling until a few days ago, he said he may need to talk to a medical therapist. I am working on finding one here.Suzanne, I am waiting for my social worker to get settled. Her daughter says she's in a daze from this major move at her age. I will get a referral eventually.

I am so very sorry that your family is facing still more problems! I know you're disappointed with Chris, but I'm confused as to why he was taking lomotil. Did frequent cramping in his k-pouch (perhaps caused by pouchitis) lead to a frequent need to intubate that he tried to slow down with lomotil? Which came first, the lomotil or the pouchitis. In an earlier post you mentioned sludge in his pouch, and maybe that was due to the lomotil.

I know you said his stoma was inflamed, but was that a result of pouchitis or frequent difficult intubations brought on by pouchitis?

I had what the drs. said was pouchitis for 8 years (or at least every single time I was scoped I had varying degrees of pouchitis). Frankly, it never occurred to me to take lomotil since I had previously found it to work for a while but when it wore off, a deluge would begin. Once on tour in Scotland with my j-pouch I took it to enjoy a day of sightseeing; the morning went fine, but early afternoon brought on my most embarrassing moment, not making it to a restroom in time and having to walk back to the hotel in an awful state. UGH! But maybe Chris just needs some period of time without the need to intubate and he thought lomotil might do the trick. I can see why he might conclude that even though it might not be a good idea in the long run.

My experience with "pouchitis" and a k-pouch ended only with prednisone gradually replaced with 6MP. But maybe antibiotics will work.

Anyway, lots of people out here think highly of both you and Chris--you are a font of information for us and I'm not alone in wishing you both good luck and easier times.

Holly,
I think that Jan (as usual) had the best advice, just be there when he's ready to admit he needs help. It is usually impossible to stand back and let them learn on their own especially when their health is involved. Love them let them grow and be there without recriminations or judgement. That is what we wanted from our parents and now our partners.
Norma

What came first? He's not talikng.
Fine after he left for school. Nights are worse. Time will tell.
Thanks again for your kind and encouraging words.

Holly,

Not sure if this will help or not. One of your comments was that you were concerned over short bowel disease for Chris. Now each of us is different so results may vary. I couldnt remember how much Chris has had removed, but I just wanted to let you know (or remind you if you remember) that I had my original jpouch removed for a second pouch. Lost the second pouch for the KPouch. Even with all of that surgery and intestine lost, Fazio still said if I ran into problems he felt comfortable that he could remove my Kpouch and give me an ostomy.
I know that Chris reads this sometimes so I hope he reads and realizes how much his actions impact you both.

Mike S

Holly
I too am on my second pouch and will be okay if this has to come out according to Fazio.

I had a thought
If Chris has trouble coming to you when things aren't right...maybe he would be okay calling Fran..

Mike, Chris has very little small bowel left. An extremely large amount was used for the k pouch.
It is very close if he needs a diversional ostomy to not end up with SBS.

Leslie, I put him on with Fran once in awhile. He was face to face with her Sunday and failed to mention the lomotil. I do understand that he was thinking it would help him, not knowing he had pouchtitis.
It's the not telling me part that we can't seem to get past.

Holly, I'm so sorry you are having such a tough time with Chris right now. Having a good cry isn't a bad thing when things are rough, been there! Just make sure it's a box of Puffs! Please know we are all here for you to vent to and are sending you both our thoughts and prayers.

I just wanted to offer any healing vibes I had.
Although I don't know all you and Chris have been through, I can remember the too many times I would hide my flares, etc from my mom because I hoped it would go away. I also never wanted to worry her and was myself scared and frustrated.
I hope you find the answers to prayers. I am thinking about you!