Just Spent 3 Weeks in the Hospital - Now have Colostomy

[traceyn11]

Several of you have read about my problems with my colon. Well on Halloween, I was in lots of pain and had a fever so they admitted me. I got a colostomy on the 12th. So far, everything is healing well which we were worried about given my low WBC and neutrophils. This of course will put off the stc until I am healed and the oncologist wants me to try Vidaza again as well.

Anyway, just wondering if anyone has a colostomy or had one when they had a transplant.

Hope everyone is doing well. I am going to try to catch up posts I missed.

Tracey

[PaulS]

Hi Tracey - So sorry to hear about your continuing struggles - I don't recall the colon problem - just the lung problems - has the pneumonia at least cleared up? When are they thinking about the transplant now? How is your marrow holding up? Is the colostomy permanent or temporary? The colostomy is probably another area where they need to watch for infection and another risk factor - might influence the type of pre-transplant conditioning they use - the heart condition they discovered in me caused them to change to a not fully ablative conditioning regime - something you can ask your transplant team about, if you haven't already. If you ever want to discuss something in a private message i'm happy to - in case you don't want to go into too much detail on the board. This roller coaster must be extraordinarily difficult - so hang tough - You continue to be in my thoughts and prayers.
Paul

[traceyn11]

Hi Paul,
The colostomy is temporary at least until sometime after the transplant. My colon problems have caused me to be in and out of the hospital since I had my only 2 rounds of Vidaza in April & May. The drs. think the bad part of the colon has been there for a while, but was exacerbated by the chemo regimen. I have to call the transplant team today to find out what they want to do, but I think it will be several months before I can get it done. I will definitely ask them about a less ablative conditioning regime.

My bone marrow is okay I guess. The last BMT I had in Sept showed the blasts down to 10% from 14%, but my counts are all still low and they are worried about my weight since I just keep losing. At least I am off most of the antibiotics for now. The fungal infection is improving so that should be cleared up by the time I am healed from the surgery. Thanks for your continued support. It's hard for other people to understand everything I am going through.

[PaulS]

Hi Tracey - so sorry - you must be exhausted - but glad the colostomy is only temporary. I was sick for about three years before my transplant - slowly declining - slowly losing the ability to do all the sports and outdoor activities I loved - until i had become a full time patient - getting weekly transfusions etc. Before the transplant, as I mentioned somewhere I think (brain fuzzy) they found heart disease - needed stent - changed transplant plans - a very depressing time In many ways the period leading up to the transplant was worse than the transplant itself - that all said - my pre-transplant sounds like a picnic compared to what you have gone through. The good thing about finally getting the transplant is feeling like I can actually get better - back to normal -or at least close enough.

At this point just focus on getting stronger - try an eat and gain weight - don't worry too much about what you eat - healthy is better but calories are better than no calories- maybe try protein bars or drinks - ice cream is always good - so rich in protein and calcium Move as much as you can and appreciate your loved ones. Don't despair - stay hopeful and grateful - you will get through this - a positive attitude is critical - i believe this in many ways will be the hardest part - not to say the transplant will be easy - but at least you be on your way up and not hanging in limbo. Talk to your transplant team and see if they can do the transplant sooner than later - they may be able to work around the colostomy - especially if you don't have any active infections. During my transplant they were careful not to do things that would be too stressful for my heart - they are used to dealing with many "co-morbidities".

My transplant team and cardiologists made it a priority to just get me in good enough shape for the non-ablative transplant - not totally fix the heart first - just some duct tape. They also felt the MDS was contributing to the heart problems - and it may very well be contributing to your other problems

Sorry if I'm rambling - but I want you to get the transplant done and on your way to being well again - and I really want you to stay strong and positive until that time - I fully intend to hold you to our summer coffee date - you are in my prayers and if can be of any kind of help let me know -

Stay strong! paul

[traceyn11]

Hi Paul,
Thanks for supportive and kind words. I didn't realize you had been so sick leading up to your transplant other than the heart issues. I guess I should really consider myself lucky in that up until I had my appendix burst a few months ago, I was pretty healthy. I am trying to remain positive and keep thinking about how the surgeon told me in a few weeks I would feel better than I had in months. I just mainly worry about the effect on my kids. It's really tough if your mom is in and out of the hospital for months. Even though they ae teens, I can see the effect.

The surgeon told me that they had no problem with me getting the stc in 4-6 weeks, but I do need to talk to my oncologist next week because they really want me to start chemo again.

LOL on the coffee date - I look forward to it!

How are you doing? Are you still at the hotel?