How to deal with emotions of new ostomy

And you are tapering Prednisone which can wreck havoc on your emotions.

It took me 3 changes before I got the hang of it but that was an end ileo. Loops are trickier. What ostomy products are you using? Try to get a convex appliance, they work much better with loops. Try adding ostomy accessories like a belt and barrier sheets. Things will get easier and better.

I had the same high output issues. Everyday as you heal the output will decrease. Just drink a lot of fluids. There are meds to slow the output down but your surgeon may want to hold off for a few more days after the blockage.

The Prednisone taper, pain meds and recovering from surgery will make you tired but you will feel much better in a month. Ask your surgeon for a b-12 shot.

You will probably lose weight with this loop ileo and high output.

I kept telling myself that I felt better with the ostomy than with UC.

It is emotionally draining, especially the loop ileo. When I had the end, after step 1, things were so easy. I had a moment where I wondered if going on to the jpouch was the right decision. I was still 2 steps away and it seemed like a lot... I moved forward, and I got the loop ileo after step 2. The loop is very challenging. Never for one moment was I comfortable with my loop. It output a lot, very quickly, lots of liquid, I suffered from dehydration, low blood pressure, had a blockage... A lot of what you describe is just from it being new, like the riding in the car discomfort, but the stuff with not sleeping well, I did not sleep well with my loop. I remember one night I woke up with a really small leak in the middle of the night. I had to change. I couldn't get a new wafer on without it outputting. I probably wasted 3 wafers and some bags. It was awful. I was ready to sleep in the bathtub and give up. My loop was a nightmare. It's only 8 weeks at least. The jpouch, you will likely have ups and downs while adjusting. There may be some times you feel defeated, but overall, I know I made the right decision for me. It wasn't going to get any better with the UC. It responded to nothing. I was up all night, with pain, on tons of drugs... Things are a lot easier for me now. I hope you can figure out a plan for your loop & just get through the next few weeks. When the blocks, it really makes you want to reverse ASAP. I reversed at 7 weeks. It was the earliest my conservative surgeon would do it...

I'd recommend you go see an ostomy nurse and work on finding solutions.

How long do you have to wait to get reversed?

Thanks for all your responses. I think I just need to know I'm not alone. My family is supportive but they can only do so much. Thanks for the tip for the pillow while driving. I'll try that the next time I go out.

Ks1905-
Does tapering predict have an effect on emotions? I was on 40 mg before so I thought if it didn't make me all wacky on that dose than tapering would be fine. I'm down to 15 now. I def feel like this crying is not normal for me. Maybe it is the pred idk. Not much I can do about that right? I use a convex wafer and a belt. I had to wash the belt bc it got dirty with the leak. I use hollister bag and try to empty it at 100 ccs before it gets too heavy. I ordered barrier rings and adhesive strips so hopefully that'll help. I wish I had them right now.

Cmfdrama. Thanks for the suggestion. I know they said showering doesn't effect the bag or stickiness but I'll prob do this tomorrow when I shower. I did find a support group but they don't meet until the last week of the month. So I've got a few more weeks to go. Thinking about maybe talking to a counselor or seomthign but idk. I just feel so down about it all.

Ntosostickygirl- so sorry to hear your frustrations too. I just gotta push through until I can move to the next part. How was the second surgery? Easier than the first? How long did it take u to adjust to the j pouch? I am getting married in 6 weeks so I have to wait until after that for the reversal. I told my fiancé today that I want it to happen asap. I hate this. We already cancelled our honeymoon to Hawaii so might as well 😔

Yes, prednisone can be very difficult emotionally once you get below 20 mgs. Your body will have to adjust. I think that I mentioned in a previous post (prior to your surgery) that for me the Prednisone withdrawal was the worst part of my 1st step. I had a much smaller surgery than you for my first step of 3.

After I got down to 5 mgs I started to experience headaches, everything felt cold and very bad aches in my joints. I may have been on Prednisone for longer than you, 8+ months, most of the time at 40-60 mgs.

The adhesive strips will definitely help. See if they have barrier sheets; you cut a hole in them and put them down first and then your waffer goes over it. They will protect your skin and help a little bit with the leaks.

Another pillow tip: keep one handy and hold it on your stomach for support if your going to sneeze or cough....it can be painful the first couple of weeks after abdominal surgery.

I liked Coloplast products much better than Holister.

Doggido,

How was your night? I hope that it was better than the night before.

Not everyone's takedown is as easy to recover from as NSSG's; I spent 11 days in the hospital after I was reconnected. I developed a minor abscess.

Some other people take a few months for their pouch to adjust during the transition period with butt burn and difficulty emptying.

Don't be disappointed if yours doesn't go as smoothly as others, you need to look at this in terms of months and years, not days and weeks. All of this will be a distant memory in a few months. I don't even remember this stuff unless it comes up in threads on HW or J-pouch.org.

Doggiedo, I have another suggestion for you and everyone else. I've made a pouch cover for my ostomy bag using those bed liners for kids that may still wet the bed. I put it on every night before bed. That way, if I ever do have a leak (which luckily I've never had) while I sleep, it will go into the absorbant pouch cover and not over me or anything else.

Happy to hear you're sleeping a bit better. I would love to get more sleep. I don't want to have to set an alarm in the middle of the night to empty the bag, so I only get 4-5 hours of sleep a night. It will be nice when I can sleep longer again and also sleep on my side as well. Since my surgery, I've only slept on my back. At first it was due to abdominal pain. Then it became more of fear of rolling over on my right side (stoma side). I have a body pillow on my right side just in case. So glad my reversal surgery is in a couple of months.

Wow they paid you for recovery- never heard of that!

Cmfdrama- I hear what you're saying about not being comfortable sleeping. I'm not a natural back sleeper either and just wanna roll to my side! I leak even when on my back so I don't think rolling is gonna happen any time soon. Sucks right?

Im home alone this weekend for the first time, and already getting really anxious about it. I'm staying at my parents so I'm not alone. I don't really want to be alone. My fiancé is gone from Fri afternoon until Sunday.

My nerves stem from the fact that he's been my rock. He's helped me emotionally but also with the bag changes. He helps me measure and do the process quicker than if I were doing it alone. This allows me to have less leaks (stoma likes to squirt as u all know, at the most inopportune times). I'm terrified to do it myself. Can I? Yes. I mean I know I'll have to do it myself eventually. But I really don't want him to go.

He said he can stay home but it's his bachelor weekend with his buddies. He's not a partier by any means but I do want him to go and have fun with his friends. He offered to stay home a few times but no way would I let him. He would stay if I asked him to, and never hold it against me. But he needs to have fun.

I know if I need help this weekend I can just have my mom help me. She's watched as the nurse helped me change the bag so at least she's seen it done.

doggiedo, I was an emotional wreck when coming off the prednisone carousel. Tried all the traditional meds to try and stabilize my anxiety. It took a short period of experimenting with different strains, but since starting medical cannabis (ingested or vaporized) my mood and outlook is 100% improved. I dodged surgery for as long as I could because I thought the stigma of being an ostomate would be too much to bear. MMJ just sweeps all this away (for me anyway)

It doesn't suit everyone, but it's certainly worth looking into. Most of the medical profession are now advocating it to wean the unfortunate souls who (through no fault of their own) off PRESCRIBED OPIOIDS from which they have sadly become dependant.