Sick of this already.

For general discussion of ostomies and continent diversions.
Anyone can read. Only registered users can post.
No commercial posting allowed.

Moderators: Bob Webtech, Jimbob, ot dave

Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Post Reply
ThatFLguy
Posts: 29
Joined: 2021-12-18 21:25:36

Sick of this already.

Post by ThatFLguy »

Only been a bit over two weeks and already feel that this was not worth it. I got an infection right after surgery on the 15th of April that put me back in the hospital on the 18th for another three days. Now I am going on 18 hours with very little output except urine. Nothing I have tried has worked. I see my ostomy specialist tomorrow so I hope to get some more answers then.

Also, I have had a burning feeling around my stoma that will not go away for a week now. Talked to my PCP about it and he just wanted me to wait to see my ostomy specialist.

Not liking this at all and I know that the alternative to this is not something that I can/could do anymore but this sucks a lot.
I fart in your general direction!
User avatar
Diane C
Posts: 975
Joined: 2005-10-02 08:30:29

Re: Sick of this already.

Post by Diane C »

ThatFLguy,

Sometimes the reasons to get an ostomy in the first place, the hospital stay, the maintenance -- all of it seem too much to bear. I remember 2 lonely nights at the hospital in 2015 when the pain was so intense I wondered if I could continue. We didn't want to use heavy duty painkillers to slow down movement. Eventually, time and "stuff" passed. I also recall fearing I had a blockage at a skilled (?) nursing home afterwards. If no output, I'd have to return to the hospital. My family is far away and I wasn't in the mood to see friends. An older nurse asked what used to work. Prune juice! So she heated some up and visited me for 6 hrs during the night as I sipped on it. It worked. Hallelujah!

Keep the faith. I found that with open surgery, when gas passed over raw tissue, yikes! But all this passed and I lived to tell the tale. Sometimes it gets discouraging because I've various digestive disorders but the alternatives are worse. I hope tv, music, a view outside or something can keep your spirits up. And that your doctor is receptive and has answers!
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
User avatar
steiconi
Posts: 1051
Joined: 2015-05-18 03:12:03

Re: Sick of this already.

Post by steiconi »

I assume you have a colostomy.
18 hours is less than a day, why are you worried? Unless you have an ileostomy...

What have you tried? Magnesium citrate? Fiber? Are you hydrated?

Is the area around your stoma red or blistered? Itchy?
Might be a yeast infection or allergy to the wafer.

It might help to rinse your pouch and stoma area every time you empty, poop can irritate skin. Best way: take off the pouch and jump in the shower. I also have a bidet sprayer hooked into my toilet water line to make it easier to rinse ($35 at home depot, easy to install). At very least, use a water bottle for rinsing.

Are you using powder or barrier wipes before applying the wafer?
You do CHANGE the wafer, right? Just making sure...

PCPs and even C&R surgeons rarely know much about ostomy care. It's good your PCP didn't make things worse.

Work on accepting this thing you cannot change. Being mad about it only makes it worse.
Lee

I am not my disease.
ThatFLguy
Posts: 29
Joined: 2021-12-18 21:25:36

Re: Sick of this already.

Post by ThatFLguy »

Sorry that I did not get right back to say what is going on.

I have an Ileostomy. Right now is like a horror ride. One day is all liquid that burns like hell. The next is like oatmeal that was left on the stove after breakfast. I am getting samples of a different wafer from Coloplast because my stoma pulls in when I sit or bend. I have also had quite a few leaks due to what my ostomy specialist feels is due to the stoma issue.

Here is the thing, this was done because I have pelvic floor muscle and nerve damage. The medication helped for a bit but stopped. I was bowel and bladder incontinent so the issue was that without medication constipation would/could kill me due to my history with diverticulitis (Surgery for it in 2019 when I had two massive abscesses and a perforation)

My Ileostomy is reversible but not in a good way because a colectomy would essentially leave me bowel incontinent like a newborn baby. (We tried botox into muscles and that is how it left me)

Long story short, this is not going away but I hate dealing with the issue that comes with it. My hope is once I get the right wafer that issue will go way down.
I fart in your general direction!
User avatar
ot dave
Posts: 2094
Joined: 2010-03-04 19:26:19

Re: Sick of this already.

Post by ot dave »

If you could share your application procedure, we might be able to suggest some things that we think will work, or things that we think that you might need to stop doing/using....
stage III rectal CA 12/08 - colostomy 3/09
"Gatoring since 2010"
Psalms 91:2
User avatar
Diane C
Posts: 975
Joined: 2005-10-02 08:30:29

Re: Sick of this already.

Post by Diane C »

I also ended up with an ileostomy due to pelvic floor issues and constipation/distention. It's been a loooong journey. Before my ileostomy, I had a colostomy and before that, more surgeries, biofeedback, acupuncture, galvanic stimulation -- and how much time do you have?

Different manufacturers provide different kinds of products to help you. Best bet is to work with an ostomy nurse to figure out reasons for leakage and other problems.

Most of us learn by trial and error and much experimentation. You will get there but we know it's tough at times. I agree with Dave. Please explain how you apply your appliance and what you are using so we can help you. The dark days will subside.

Wishing you some relief!
Diane C
2000 MACE
2002 Colostomy
2018 Above + anus removed; Ileostomy
2020 Scar tissue removed
ThatFLguy
Posts: 29
Joined: 2021-12-18 21:25:36

Re: Sick of this already.

Post by ThatFLguy »

Diane C wrote: 2022-05-06 23:28:28 I also ended up with an ileostomy due to pelvic floor issues and constipation/distention. It's been a loooong journey. Before my ileostomy, I had a colostomy and before that, more surgeries, biofeedback, acupuncture, galvanic stimulation -- and how much time do you have?

Different manufacturers provide different kinds of products to help you. Best bet is to work with an ostomy nurse to figure out reasons for leakage and other problems.

Most of us learn by trial and error and much experimentation. You will get there but we know it's tough at times. I agree with Dave. Please explain how you apply your appliance and what you are using so we can help you. The dark days will subside.

Wishing you some relief!

I too have Pelvic floor issues. Dyssynergic defecation with rectal hypersensitivity, incomplete bowel. My doctors feel that it all comes from my first surgery back in 2019 for diverticulitis. The main point is that I ended up with muscle and nerve damage to both my puborectalis muscle as well as all the lower abdominal muscles that control defecation. I was on medication, had biofeedback therapy for two year, tried botox into the puborectalis muscle, and even tried sacral neuromodulation. Nothing helped. Once a month I ended up in the ER with cornic pain and very constipated even with all the Miralax, Bental, and Colace I was told to take every day.

Doctors felt that this Ileostomy was the only thing that might give me some quality of life back but never enough to be able to work or function 100% again.

As far as products, Right now I am using Coloplast with the starfish-like wafer and extra tape strips. Before that, I had the covatech brand that the hospital gave me but I blew out of those every other day. The covatech had a lof of wax like stuff with a tape stip all the way around it.

The big thing is that when is sit down my stoma turns into a crator and then my stoma is like a little peak in the middle.

Also, I have a loop Ileostomy but I was leaking around my skin (three places were passing stool like a water gun squirting) and my ostomy specialist said that is not right and to get to the ER asap but before 3 pm Friday as that was when the ostomy specialist leaves.

Well, I got there at 2:35 pm but they did not get to me in time so I got a ct and then sent home and told to come back on Monday with the specialist is in.

I felt this was wrong because there were three colorectal surgery doctors on-site, and did not want to have me taking my bag/wafer off. Two were too busy to deal with me after the CT did not show anything major/life ending.

I am getting other samples from Coloplast on Monday and then going to call/go back the hospital because my stoma burns all the time and this just sucks.

They have to help me find something that works or fix the fact that my stoma pulls in so much. The other options are the way too bad for my doctors to let happen because they are trying to not make me bowel incotinen again.
I fart in your general direction!
User avatar
steiconi
Posts: 1051
Joined: 2015-05-18 03:12:03

Re: Sick of this already.

Post by steiconi »

Sounds like you have a *recessed stoma*--that's not uncommon. Most ostomy suppliers offer convex wafers designed to give a better seal in your situation.

An ostomy nurse (or probably the specialist at the ER) can help you find products that will help.
Lee

I am not my disease.
Post Reply