Fight like a girl, wow is all I can say.  I guess you learned a lot from that surgery!  Life is a learning experience that's for sure.  I'm glad you are doing so much better!  I have to call tomorrow to get that apt with Dr. Remzi, but I don't have time this summer.  I'm a pet sitter and am totally booked.  And these are people that booked us last year!  I guess I should just call and perhaps we can do a telephone meeting Or conference call.  

 

Zupps, we already had the abscess and fistulia!  That's why we had the reversal.  It's been such a long and difficult journey.  We are hoping that the fistulia just goes away with the bowl rest, then we don't need to come out to Cleveland.  I really don't want to go there.  I don't know why, but Ohio just doesn't do it for me, and I make everyday like a vacation!  Even when I'm home.  I'm a little nutty!  But since I e almost died 3 times from my own issues, I live every day like its my last.  Some day it will be and I have a long bucket list to get through!!  Ohio is not on it!  I'll call tomorrow.  I've been avoiding it, don't know why, but I guess we need those consults.

 

continue to be well.

It does seem too soon to be playing lacrosse to me but the surgeon told us it´s fine to play and she can do whatever she feels up to. I know it helps her mentally just being involved. She really only had pain about the first week after takedown. Her issue is being exhausted from lack of sleep because of frequent night time BMs and getting dehydrated. I can´t pound it into her head enough how important it is to drink a TON of water!  Last night she was dizzy and weak, I made her drink a couple bottles of water with electrolytes and she felt better.  She had to go back to the hospital once because of dehydration. I hope she learns soon because she plans on going to college in the fall and I would love this to be all sorted out by then. Very scary for this mama!

 

Good luck to Jeff, hope he continues to improve!

Marybeth, good for her!  She sounds like she is healing just fine.  Jeffrey is still on heavy drugs but he has a dependency right now.  I called our primary and she is going to start getting him off the stuff.  The problem is he has been on it since Sept.  But part of the pain issue is the drugs.  But he will get off of the Drugs, I'm not worried about.

 

glad Lily is doing so well!

 

Glad he´s going to be getting off the drugs, scary stuff!  Lilys surgeon wants her to keep taking codine twice during the night, even though shes not in pain, to slow things down and thicken things up. I don´t think its working so thinking about taking her off, last thing she needs is to be hooked on that. Plus I talked to the pharmacist and she said narcotics can cause more GI problems. Great.  Now hes going to prescribe her an anti anxiety to see if that helps her sleep. She´s a pretty high stress kid unfortunately, type A personality. It is so difficult trying to figure these things out especially when everyone is so different. I am really hoping within a month she will be off the hard drugs and be able to manage just with the Lomotil as needed, fiber and probiotics.  Good luck!

Marybeth, codine Might do the trick, I do t know.  Jeffrey wasn't on his pouch long enough for me to know what worked or didn't.  I know he is constantly up all night.  Because of his sensory issues, and OCD, he is constantly checking thing.  He is so upset if he has an accident, now keep in mind, an accident to him is a little bit of leakage!  He also was in constant pain because the abscess and fistulia were developing.  Personally, it's easier for me with him back on the ostomy.  The problem we are having now is leakage of yucky stuff from his incision.  Part of it didn't close so a little bit of blood and some other yucky stuff is draining.  It keeps going under the ostomy adhesive and loosining it up.  He has been changing the appliance 3-4 times a day!  But like I said, he is a little OCD.  You have to see his skin from all those changes.  It's dry and raw.  So red too.  

 

Ok, I'm tired.  Hope Lily had a good day.  Poor kid!

 

Hi everyone.  I just wanted to check in a see how everyone is doing.  Marybeth, how is Lily doing?  I can't believe she is back to sports!  Amazing.  

 

SM, glad to hear Scott is doing well at school.  Zupps, how are you doing?  I hope everyone is doing well.  

 

Update on Jeffrey.  We are working on getting off the drugs.  What an ordeal that is going to be.  I was surprised the doctor, our primary, gave him more narcotics, just a lower dose.  But she also gave him Clondine, and Ativan.  He should be off all the stuff in less than a month.  We figured out what the icky stuff coming out of his incession is.  It's a, oh I can't remember how to spell it.  Anyway, it's still coming out and keeps lifting up the wafer but jeff is dealing with it.  I just wish the darn thing would dry up and go away.  But other than that, he is doing great.  I booked a trip to Disney for all of us.  I figure it's been such a crappy year, we need to go to the happiest place on earth!  And I'm finally getting to get down to Florida.  so I will be there before they get there, pick them up in Orlando, then drop them back at the airport and go back to Delray beach!  I can't wait.  If I don't get out of this frozen tundra soon.............

 

Would like to wish all a wonderful Easter and a Happy Passover!

 

jeff is doing great.  I can't believe how well he is doing.  He is eating again, a little too much, but at least he is eating.  Now we are working on getting off the drugs.  And on that note, he will just have gotten off of them and will wind up back on them in June!  We are going to Cleveland and have an appointment with Dr. Dietz .  I thought it would be good to meet with him rather than Dr. Remzi only because if it comes down to it, we don't want the pouch redone.  We are going in June.  my question, what should I expect when we get there?  Dr. Dietz is going to do exploratory surgery to look at Jeffrey's pouch and maybe find the micro leak.  Just wondering how long to expect to be out there.  Anyone know anything to do or any good places to eat?  I don't know why I think I'm going to the end of the earth.

 

dianne

 

Hi Dianne, 

Glad to hear Jeff is doing well and you're going to Disney!  A well deserved vacation for sure!  

We just got back from Cancun, Lily's senior spring break. Several of her friends/families went.  We had a PRETTY good time but Lily was frustrated because she really couldn't keep up with her friends, staying out late at the resort clubs. She did very well the first four days as far as BM frequency but then it started up and by the last night she had several accidents. I was so ready to get back home. She also had blood in her stool a few times which freaked me out. I have no idea what it could have been but I'm wondering if it could have been the buffets, they're crawling with bacteria and several of us had "issues".  If Lily had something bad I'm sure it would affect her 10 times worse than anyone else. She also got into a few cocktails which I told her was NOT a good idea! I wonder if that could have been part of the issue. Live and learn I guess. She'll be off to college in the fall and I'm not going with her!  Now that we're home she's feeling better and the frequency is back down and no more blood.

 

I really think the Lomotil/Imodium COMBO (one Lomotil/1-2 Imodium) is working. Before she had issues, her BM's were less than 10 and are back down now.

 

Good luck to you guys and have a great trip!

Mary Beth

 

Hi MaryBeth!  Glad Lilly is doing well!  She sounds like a spunky young lady.  Good for her.  Funny that you guys went to Mexico.  When Jeffrey was first diagnosed, the doctor told us two places to never go, Mexico and China!  Some of the issues she was having we probably from the trip. The resorts are fairly save as far as the food goes.  Maybe having a few drinks, stirred things up.  Jeffrey has a little bit of wine, he and my husband are big on the Reds so they are always trying new stuff, collecting the stuff and making me crazy with it!  Did she go swimming in the ocean or the pools ?  And any change in water is always going to be an issue.  When Jeffrey was little we always carried bottled water with us, but I rarely let him have tap water even at home.  Our water stinks, literly!  There is so much cholorine even I can smell it and I don't have. Good sense of smell.

 

disney is going to be awesome.  I'm so excited.  I'm leaving Wed. to go down to Delray Beach for about 6 weeks.  I usually go for two months, but obviously that's not happening this year.  But I'm happy for the rest.  Then when i come back, I think we will be heading to Cleveland Clinic.  Long story, but I have requested that our surgeon and Dr. dietz in Cleveland talk before anyone does any more surgery!

 

hope things continue to go well for Lilly.  She is a brave girl!

 

dianne

 

I wouldn't have taken her to Mexico but we booked it way before we knew she would need the colectomy. She would never have forgiven me if I canceled. I'm sure the water and food didn't help!

Have a great time in Florida, a much needed break for you I'm sure!  And good luck in Cleveland, keep me posted. I hope Jeff continues to get better as well