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!

awesome what ! thanks for the update -

and why did someone decide to call "it" an appliance ?

So wonderful to read how well you are doing and all the positive support you have! Good for you!!

This is encouraging to those of us who might need to consider surgery as well.  I appreciate your sticking around to share.

Hey Njjelly, visit us on the Ostomies board! Loads more post-op people. Glad to hear you are doing well.

I also thought I couldn't roll on my side after surgery, and then one night I woke up and I was on my side... and everything was fine. I have no trouble with it now, I just make sure when I"m on my right side that I don't crush the pouch under my body or roll so far that I'm laying on my stoma. Cheers!

UCwhat? heartfelt joy to hear you're doing so well!

You'll lose some of the weight after you're off the pred....that part will take time from what I understand.

Please give your mom a huge from me...seriously. Thank her for me for being such a caring mom...no, not all moms are able to do as she has. OK, and your boyfriend too..lol...the support of others during such an ordeal is certainly helpful in one's healing process.

Looking forward to your other updates....continue to be well!

qxx

Thanks so much for all the kind words and responses!! I am sorry I haven't been back here to respond or update for a while.

Quincy~ I DID give my Mom a hug and told her what you said....she was very touched. She is starting to think about when she is going to leave. I think she is starting to feel like she HAS to leave because I don't really need any help now. But, it is still great to have her here and I told her to stay as long as she wants...but I think she'll take off in the next week sometime. I owe so much to her.

I DO want to and will come back soon to answer all the questions from the comments above, just don't have a lot of time right now. I will paste the update I just typed up on the ostomy board though. Hope everyone is feeling well and enjoying the spring!

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!!