Stoma Revision

[Chris Penna]

In October I had a non-mesh hernia repair for a very large paristomal hernia.......after a few weeks the surgeon decided he needed to do a stoma revision to bring the stoma further out. Said it was a simple procedure and would take about 15 minutes. This was last Monday and I was sent home the same day. I was asked if I had supplies at home and said yes. When I got home and did my first appliance change I was shocked! My stoma is 2” which is 1/4 “ larger then my flange and feels hard and swollen. I know the stoma is swollen and will get smaller but it just seems exceptionally large. With the Corona Virus both my surgeon and my primary doctor have closed their offices so I Sam unable to get a new prescription for a appliance that will fit. I found what I needed on line and am paying out of pocket for a 2 week supply until I can have my ostomy nurse look at it. My appointment is on Wednesday and in the meantime I’m making what I have work barely. My original colostomy was in 2017 and I don’t remember my stoma being so huge and swollen. I wish I had just left everything alone since other then the size everything was working and manageable. This situation is being made more stressful and difficult by the Corona Virus! I just pray they don’t cancel my appointment with my WOCN in a few days! Forgot to mention that today it’s been 5 days and haven’t had a bowel movement even though I’ve been takin Miralax daily for 3 days now. Just a lot of gas and rumbling with only a little liquid output. So I’m getting so worried and stressed out with no where to go for help! Am I expecting too much to soon? I just want to get back to a manageable ostomy! Has anyone gone thru this?

[To Dream a Dream]

Dear Chris: Please try to reach one of your physicians and/or WOCN thru the hospital switchboard or an answering service. Tell them your surgeon's name & stress that you just had surgery & are having problems. Look on your original discharge instructions to find a contact number & any other pertinent information.

Having an ileo, I have no direct experience with a colostomy & its supplies. I do know that in the past whenever a stoma was swollen, my ET nurse recommended cutting the hole in a new wafer a little larger to accommodate it. I now use ConvaTec's moldable durahesive wafers (they are more flexible) which you don't cut but roll back to the size you need.

Your post sends me back to November 1985 when I was in Upstate Medical Center for for an elective revision of a recessed ileo stoma which I had been living (& gainfully employed with) since its inception in 1977. Immediately after the surgery, we (including my surgeon, all the residents, many of the staff nurses & aides) developed a horrible GI bug. (Pretty bad when the leading gut surgeon in the area had to cancel all operations for two days. The poor residents couldn't take time off & suffered accordingly.) My fresh post-op stoma swelled up then. Please know you have my empathy trying to contend with this alone during a major pandemic.

Again, please contact a professional as soon as possible. They will be best able to assess your condition & direct you And hopefully provide the reassurance & support you need at this time.

Know you are in my prayers.

[Chris Penna]

I have an appointment with the surgeon Tuesday morning and on Wednesday with my Ostomy Nurse....... Right now it’s manageable with no bleeding and no signs of infection.......If anything changes I will definitely make some more phone calls.....

[To Dream a Dream]

That seems like a good plan to me. And don't don't hesitate to reach out to your professionals if symptoms worsen. God bless.

[Chris Penna]

I got a hold of the surgeon this morning and he said I should be ok and no they don’t have any ostomy supplies so I will have todo the best I can until my order comes in on Monday! He said it would be ok to take Milk of Magnesia and after an hour it’s already working! Just so frustrating that where I live there is no Ostomy support! I have to drive 90 minutes to a outpatient clinic and they are only open a couple days a week!

[sassie]

Best of luck Chris, I was going to type try Milk Of Mag, it seems to work fast, i never had luck with Miralax ...I understand how your feeling, when i had my first colostomy my surgeon was 2 hrs from me, and so i had to use the net alot to figure stuff out, that was in feb. of 2018, sense then i went in for a reversal sept of 2019 and ended up with my entire colon removed and had a stroke during the unexpected 8 hour surgery because they removed most all from my right side my surgeon stated it was the longest surgery he ever had to do and hoped it was the last....It was a shock to me but time is a healer and no its not smooth sailing but i'm still here and coping with what life deals us....this site was a huge help and i read here alot, keep us updated.. God Bless YOU, sassie

[Chris Penna]

I got a hold of my surgeon and he said it was ok to try Milk of Magnesia and it worked within an hour! Miralax didn’t do anything! I have always avoided eating a lot of fiber but it looks like I’m going to have to figure out a better balance! And yes, thank god for the help we get on this site and other ones! For the number of us that are out there fumbling there should have better support! Very frustrating

[To Dream a Dream]

I don't know how the current crisis is affecting the ostomy supply manufacturers, but I know that many have WOC nurses on staff to speak to clients. I've found them to be informed & supportive. Glad you are hanging in there.

[To Dream a Dream]

Thinking of you today as you see the surgeon.

[BillGK]

I got a hold of my surgeon and he said it was ok to try Milk of Magnesia and it worked within an hour! Miralax didn’t do anything! I have always avoided eating a lot of fiber but it looks like I’m going to have to figure out a better balance! And yes, thank god for the help we get on this site and other ones! For the number of us that are out there fumbling there should have better support! Very frustrating

Chris, Miralax WILL work. I can pretty much guarantee this, because it is the chemical that is used in high concentrations in Golightly (yes, spelling, I know), and we KNOW that that works, grin. If you use enough, for long enough, you will get a result. I use nearly two full capfuls per day, one morning and one at night, and I have relatively low output volume because I eat low fiber.

For me, personally, fiber is a terrible idea because it bulks my stool which increases intestinal wall pressures and gives me problems with diverticulitis. High and low fiber is an area of increasing controversy among the professionals, for people with bowel issues. For those who think that high fiber is the way to go for people with bowel issues, I ask why it is a universal recommendation to go low residue when the bowel is distressed? This is what made me think about the need for high fiber, in my case. Why not just go, all the time, with what everybody agrees is helpful for a bowel that has acute problems? We need the proper balance of nutrients, but this doesn’t necessarily mean high fiber. I think that what all professionals agree is that constipation is a bad thing and is to be avoided! The way I accomplish my goals is to eat low fiber/low residue in order to keep the intestinal load down and to avoid blockages, then use Miralax daily, in the amount that works for me. The value of Miralax is that it thins the output. I don’t know what MOM does, for sure, but it would seem as though it stimulates bowel action...? I want thin output and not too much of it.

Please take this in the spirit it is offered: This works for me, and we are all different. But, I have thought about this a lot and have tried various ways. YMMV.

[Chris Penna]

After taking the MOM I felt ready for a colonoscopy!!!! Don’t think I will use that again! It did the job but made for a long afternoon!!!! I’m seeing my Ostomy Nurse Wednesday so I will talk to her about how much Miralax to use......Thank you for your input!