Feeling hopeless right now!

Doggiedo said...
I can understand your feelings of nervousness and being scared, along with just wanted to know which path to take. I recently went through th surgery myself and am only two weeks out from the third surgery that rehooked up my small intestine with my pouch. It’s a tough road, sure. I have good days and bad days. The bad days are just more of me being able to cope with such a drastic change. I did go through a day or two after my first surgery, and after this last one, asking myself if this is truly better than before when I had the worst of my UC. I have to remember i was pretty sucky so sick that I simply wasn’t living life. I couldn’t even walk my dog outside in the yard without having an accident. The surgery is a tough decision, but you’ll know if it’s the right step for you. If you can’t live with how things are now, then you’ve got to try something.

That being said, I am glad I have the pouch even though I’m still adjusting. I wanted to give it a shot, since it would give me more of a “normal” life. I use the term normal loosely bc normal is a relative term-normal is what you make it, right? Anyhow, the ostomy wasn’t that bad but I didn’t like having this thing hanging off of me. I hated the smell most times. I got used to getting up at night. Most of the time I didn’t really wake up, but just head to the bathroom, empty it and head back into bed. Your body adjusts. Some people don’t even need it empty it at night. Or, you can get a large capacity bag that holds more so you don’t have to get up. It as always good for me to drink something in the middle of the night!so getting up reminded me to do that. I’d leave a bottle of Gatorade in the bathroom (cover on) and take some beforehand I went back to bed. Is having an ostomy ideal? No, of course not. But it’s better than the severe symptoms of UC that many of us have and deal with on a daily basis.

Others can tell you the long term outlook on the pouch. I hear it’s pretty favorable (once you get past the initial stage where I am now). Even though you go numerous times a day, it’s not as bad as when y U have UC. The body is a wonderful thing and can adjust.

I do have to say I’ve been super tired THIS surgery. The first one took me 5 weeks to really get back into the swing of things and 6 weeks to get back to work. Even then I should have only twine half days. To months, almost to the day, so I didn’t have to deal with for adjust to having an ostomy for that long. This surgery was easier to recover, but the tiredness has stuck. I’m just taking naps and going with it.

Sorry to blabber- hopefully some of this info was helpful. You’re so young to have to make this big decision. It’s a tough one to make. Do you have a good support system who can help you in weighing your options? Good luck in whatever your decide.

cupcakespinkgal said...
It is not an easy decision and online can be good and bad. It's great for education and seeing others experiences, however remember with an ostomy and a jpouch usually the people that had complications or less than ideal situation are the ones posting more online.

There is no guarantee how it will turn out but your health and age definitely play a role. Your age is definitely on your side for better healing and positive outcome.

Definitely don't listen to the disease free folks
Or take their advice with a grain of salt. Others input and opinions were a big part of why I did my second surgery instead of pursuing changing my temp loop ostomy to a permanent end ostomy which deep down was what I wanted to do.

One thing that really helped me with my comfort level and determining if I could handle this was seeing other people of similar age and sex online. For example Instagram has been great. So many young women 20s-30s going through jpouch process or have an end ileostomy. Maybe it's dumb but seeing other young people living life and how they dress helped me with my comfort level and accepting life with my ostomy.

And for what it's worth, I sleep through the night 90% of the time. I rarely get up and like doggiedo said, when I do it's easy peasy sleep walking almost. Not like when you wake up in the middle of the night with a flare.

Doggiedo said...
I should also mention that when i didn’t have a bag, i kind of felt like empowered. YEa, sure I’m different but i can rock this. I can say I’ve but gone through a lot and i can do anything you all can without a bag. It made me feel a little special given the tough journey i had gone through.

It’s an emotional process and you’ll figure it out, with all those emotions that come with it!

Shaz032 said...
I had my ileostomy surgery at age 10 (I'm 51 now). From the beginning, I was changing my own bag by myself and looking after all things ostomy - I was way too independent to let my parents help me. I think they've only seen my stoma once and that was whilst I was in hospital just after surgery lol.

If a 10 year old can do, you can do it too

Somebody said...

Shaz032 said...
Anus and rectum were removed a year after my ileostomy surgery. My parents say it's the hardest decision they ever made for me but believe me, I have never ever regretted my surgery. It's so much better than living with UC.

cupcakespinkgal said...
The rectum and anus removal is one thing I think the internet makes worse. I knew I wanted my ostomy permanent and was not scared of the colectomy but I was so scared about the rectum removal.

For me, the anticipation what what I imagined was way worse than reality. I did both surgeries in one. Since I already had 2 surgeries my surgeon would only do it as one because he didn't want me to be opened again.

It was uncomfortable but by the time I was home from the hospital I could sit on a memory foam pillow without pain. Slight discomfort but not at all what I expected. And for me, my rectal disease had gotten so bad before surgery I think it was actually less pain than going 20 times a day with fissures and a fistula.

cupcakespinkgal said...
I was in the hospital 10 days. Longer than they anticipated but I was very sick and they did the colectomy, fistula repair, and rectum /anus removal all in one surgery. It took 2 surgeons.

They originally told me 4-5 days like my first surgery but afterwards my surgeon said things were even worse than anticipated so I would have a slower recovery.

I was so afraid of surgery and turned down the first referral for a surgeon a year earlier. the first time I saw a picture of stoma I was queasy and thought there was no way I could ever handle this. However my first stoma made me feel so much better it is amazing what we can adapt to with time.

NeedUChelp said...
I'm in the same boat, last resort for me as well as there other treatments have failed me and the dysphasia findings in my biopsies at 20 years old is too scary to mess with. Sometimes it just feels like I don't have a lot of fight left in me to go through battles with surgeries and recoveries, especially when it usually means more than one. Just seems like so many battles to face and can get overwhelming, even with the support of my boyfriend

Aba said...
Making the decision for surgery is a difficult one. It was my last resort after remicade failed. I was hospitalized numerous times in 4 months. I had blood transfusions, was extremely weak, barely able to walk. Heck I could barely take care of my self. After meeting with the third surgeon, whom explained the procedure much better than the others, I decided to do it. It turned my life around. I was back on my feet, no longer confined to a bed and the bathroom. For me having the bag is not bad, I made it permanent. I rarely get up at night to empty it. It's extremely easy to conceal. As mentioned before, the internet is great for information. It helped with my decision to forgo the j pouch. As mentioned, having support is necessary. My wife and parents helped me so much to get through it.