Surgery-versary

Yesterday (Wednesday) was my one month "surgery-versary"!! I figured that was a good excuse for at least a quick update. If you aren't familiar with or don't remember my story, and are curious...please don't hesitate to ask any questions to help fill in the blanks. For that matter, any and all questions are encouraged. I'm very happy and excited about my new, healthy life and love to share my story.

MOST important thing to me in my healing and positivity, is that my family, boyfriend and friends have all been extremely caring, supportive, open and understanding through this whole process. My Mom has taken care of me completely for a long time now and I will never be able to repay her. She has helped me in more ways than I could list here. My boyfriend has been loving and caring for me through all of my sickness, totally supported my decision to have surgery and the ileostomy. I know that in his eyes, I am no different than I was before this all started...I still feel beautiful and totally loved and know that he is just thrilled to have me healthy again.

Things have been going quite well since my surgery. I can honestly say I have felt better every day. Not once have I had big doubts, or a day where I felt overwhelmed with my "new normal" or questioned my decision to have the surgery and end ileostomy. My Mom is still with me and continues to be amazing, even though I can do almost everything on my own now. It will be so weird and sad when she finally leaves....in a way I don't even want to ask her how much longer she plans on staying.

Healthwise, I could not feel better. I worry that I'm gaining weight back too fast....but I lost so much that my body is totally out of whack, so I'll just keep an eye on it and see what happens. I am crazy hungry ALL the time and since I hadn't been hungry AT ALL for over 3 months, I may be going a bit overboard with how much, how often and the things I choose to eat. That said, I have had no trouble with the things I choose to eat so far, sticking to the normal ileostomy limitations. I am very happy to have an appetite again and being able to eat such a wide variety of foods.

I've been tapering my Pred...down to 10 mg/day and if all goes well will only be on it for 2 more weeks....YAY!! I have had some side effects, but no weird withdrawl stuff or problems tapering yet...Hopefully it stays that way. Aside from that, the docs have me on one baby aspirin a day, forever I think, though I'm not sure why...a pain pill here and there and my vitamins. I don't have much pain, but my big incision does hurt now and then...usually brief, sharp pains that DO hurt a bit, but don't last too long. The worst is the back/hip/leg pain I seem to have developed from being laid up so long....maybe sciatica (Sp?)...it acts up the most when I'm walking a lot.

I don't have any big problems living with and managing my ostomy. Things are still settling...stoma has some shrinking to do, my output varies in amount and consistency, watching what and how I eat and am sure to drink a lot. I've done a few appliance changes, and am trying out different brands/styles etc...to see what I like best. I will probably write more about this in another post. I have stressed a bit about how I'm going to dress around my stoma, but I know I still have some healing to do before I can totally figure that and a few other things out.

For the past week Mom and I have been visiting family, a trip I didn't think I would make so soon. Being able to travel again was a wonderful feeling. Feeling good enough to be excited about things, to enjoy the company of family, not worry about bathrooms, eating nice meals and well, everything, has been great. I've had the energy to do anything they have wanted and have been able to help them out a lot with errands, house/yard work, stuff like that...and still having energy left to just spend time visiting and loving on their new baby. It was also great to experience what it is like to manage my ileostomy on the road and at someone elses house....I even changed my appliance the other day. All of it has gone very well. Now it's time to head back home and start easing into real life again, not just "rest, recover and figure it all out life".

I feel like I've rambled a bit, yet should have more to say, but I don't know what...so that's it for now. Thanks for hanging in if you read this whole thing! Hope you are all feeling well and again, feel free to hit me with any questions!

HAPPY SURGE_VERSARY!!!!
So good to read your post!! Ramble or not, I enjoyed seeing how it is all going..
Sounds like you have an amazing handle on all of this!

So many people in this cituation can't handle it or don't know how to function after it all ..

Great to see your trip with mom going well, and enjoying family and things you haven't been able to do for so long now.. keep up the good work and the good news!

~best of luck for continued success~

Thanks for all the kind and positive words!! The trip back went very well, and I'm now trying to get back in to the swing of things as far as "real life" goes. A few issues have cropped up since returning home.

First night back I experienced my first pouch leak...and of course it was while I was sleeping. I woke up in the morning and knew something was wrong when my pouch felt empty...and then I noticed I felt what. I had quite a mess to clean up. I've been trying a different appliance every time I change, figuring out what will work best for me. It was the third day the newest one had been on, and I wasn't sure the seal was holding very well around the stoma. On top of that the weather had been hot, and I had a long car ride back, which was also quite ward. I worried that all of this might lead to a weakening of the seal even more, and I guess it did. But, the next 2 nights I had a problem of my bag getting TOTALLY full, with nothing but liquid, in under 2 hours. (I wrote a separate post about this problem, and would LOVE some feedback) The leak did contain a lot of thicker output, but maybe there was also a lot of liquid that contributed to the blow out. Either way, cleaning that up first thing in the morning when I had somewhere to be (I was very late) was no fun.

The upcoming week will be pretty busy for me, and I'm going to try and start developing more of a routine. I will be returning to work before I know it, and am getting VERY comfortable with having no schedule and doing whatever whenever!! Going back to work will maybe be easier if I get used to some sort of 'schedule', even if it's a fake one. That said, I do have a few for fun things I want to do before going back to work...most of that involves camping and fishing with my amazing boyfriend....things we love and could not enjoy while I was sick.

Hey everyone!!

Now I am at 5 weeks post surgery, and still things are going quite well. Today my prednisone taper hit 5 mg, and if all goes well I will be DONE with that horrible drug by this time next week....YIPPIE!!! Speaking of Pred, I also went for my bone density scan today to see if it is doing any damage that might be causing me to have an increased chance of osteoperosis. Next month I go to the eye doctor to see if the blurry vision is a permanent and/or serious issue. Gotta love the Pred! :P

Yesterday I jogged for the first time in a LONG time and it was great! I just did intervals of light jogging while out walking my dogs, but still, considering how sick I've been and the surgery I had, it was a pretty big step. I'll be so happy when I can get into a good exercise routine again...just have to figure out all the "dos and don'ts" for excercising with the ileostomy.

I have been trying out a different pouching system each time I do a change, in a quest to figure out which ones work best for me. In the end I would like to pick a favorite one piece and two piece, one or two different types of seals, and get some closed end bags for outdoor adventures that might require such a thing. Speaking of, I will do another change tonight, and will be trying a Coloplast system for the first time. I'm hoping that it works very well, because the features seem better than the others I have tried.

I have been keeping pretty busy lately, and today it seems to be catching up with me. Still not getting enough sleep, mostly due to my nature of not sleeping much, the pred, and waking up to pee or empty. I head back to work in about two weeks, so hopefully my energy levels perk up a bit before then.

Guess that's enough for this update, hope everyone is doing well!!