Hi guys! Haven't updated in a while, so here goes.
Today is day three with the same bag which is awesome for me. I know that most people go on average about 5 days per bag, but so far that has not been the case for me. I was having to change them every other day or they would start to leak, but ever since I started using the Coloplast SenSura bags (thanks Nyx!) I have had a lot more luck. I use the one piece. The longest I have gone so far is four days, but the cool thing about these bags is, although they finally do deteriorate on the inside near the stoma (eventually), they are great on the outside and do great under water which means that I may be able to go swimming this summer after all.
I am really excited (the strange things that get me excited these days) because it looks like the new design offers a peak-a boo window so that you can use the tan bags but still be able to look inside and check on your stoma. This will mean no more guess work as to when I need to change them. I haven’t gotten any like this yet and am hoping it is because they are cleaning out their old stock before sending out the new and improved stuff.
Since getting this done, my life has changed a lot, mostly for the better. I have ended up in the ER several times for major pain, but major pain a few times a month even is better than the non-stop pain I was in before this. On the other hand, I have been able to work, go out and live because of this decision.
The best part of having a stoma is that I have been able to eat whatever I want for the first time in 14 years. I have to be careful with foods like corn (I don’t eat it), but other than that, nothing really causes me any pain. Before I had this surgery, chicken broth was causing me problems. I was even afraid to drink water. Only other crohnies can understand what a blessing it really is to be able to eat without pain. I will miss this super power when (and if) I am able to get this reversed.
I have been gaining weight at an alarming rate since I am now able to eat what I want (ummm, ice cream…) and also because I am able to absorb nutrients. I am trying to remember that it is a good thing, and trying to learn the art of self control (harder than I thought).
My only real concern is leaking. I have only had one bad leak where the bag actually came off at work (ahhh! Bad day), but I have had several close calls.
My bottom and the rest of my body seem to be healing up nicely, so my hope is that when I see my Dr in a few weeks he will be ready to start talking about coming to the end of this journey. I am doing so well now that it is hard to remember how bad it was before, and I am pretty focused on getting this reversed and having a “normal” life again. Hopefully it will be the right decision for me. The way I see it, I can always have the stoma put back on (pulled back out? I don’t know how to say that), but I would like as many years without it as possible. I guess I am still holding out hope that there will be even more breaks in medical science before I have to make this decision again. There have already been so many in my lifetime.