reversal before finishing Folfox

[Deb1957]

Hi All,

I am having bag issues. No bag problems the 1st six weeks after surgery. Stoma nurses say they have tried everything they know to try.

I have an appt with my surgeon tomorrow. I have finished round # 8 of Folfox. Onc wants to go to # 12.

Also my surgeon will be out of the country the entire month of May.... so it's kind of now or June. I don't think I could handle leaking bags daily until June.

Anyone else had reversal prior to finishing chemo? Any feedback would be great.

Thanks in advance,
Debbie

[Bob_Weiss]

I also had no major bag problems during the first 4-6 weeks, and then I started to have continual leaks which made me consider an early reversal. Fortunately, I received a great piece of advise about how stoma shrinkage during the first few months makes it necessary to change style of pouch used: from FLAT to CONVEX. This made all the difference; in the subsequent months I had no further problems and adjusted well to wearing a pouch.

Suggest you try the stoma website which was very helpful to me during those stoma wearing days. They told me useful things never mentioned by hospital staff.

[Surroundedbylove]

I don't have that experience but I know that when my surgeon did my reversal he wanted me off chemo for at least a month before he would operate. Also he wanted me blood counts to all be in the healthy range before he operated.

SBL

[nicola smith]

A few things to consider

- Folfox causes diarrhoea - with a pouch (mine was for an ileostomy), this is not so much of an issue. Chemo D plus the frequency of BM's and other adjustment associated with new plumbing anyway would not be my choice (ouch, ouch!)

- My surgeon was not prepared to consider a reversal until at least 6 months after my first surgery and certainly not during chemo or immediately post-chemo because of the compromised immune system. I actually waited 6 months post-chemo (my choice)

- have you asked for advice on the uoaa website? Bob is right - the people there have heard it all and can offer so many potential solutions to leaks that many WOCN's have never heard of.

- Bob is also right that stoma shape always changes over time - especially over the first 8 weeks- and this needs to be reflected in changes to the appliance. Convex wafers were also the solution to my leakages that, like yours, started about 5-6 weeks post op.

Good luck

[Surroundedbylove]

And a short P.S. - just in case you haven't tried it. I went through a bout with lots of leaks - in my case it was a combination of things. I couldn't eat tomatoes or much lemon - would break through the seal. I also needed convex wafers and Eakins seals.

[tammylayne]

I also suffered from leaks, sometimes 2 and 3 per day!!!!!! My visiting nurses were no help, but once I was able to start working with an ET nurse, and asked for ideas from this board, things changed BIG TIME! I now can go 6 -8 days between changes, with no breakdown of my appliance or my skin. What worked for me:

1. Convex appliance
2. Eakin seals !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
3. Stopped using all skin prep products - I was told that for many people this actually causes leaking issues
4. Used part of a second eakin seal to fill in my divots/dimp, at 3 and 9 o'clock on my tummy
5. Originally eliminated sodas, as I felt they were causing my issues. I have been adding the odd one in here and there, with no issues and I believe this is due to the eakin seals
6. My ET nurse also mentioned to avoid bags with filters - if your output is watery, it can actually leak out of the filter
7. Stopped using baby wipes - again, this can cause leaks as it comprimises the seal between your skin and the appliance

You may have tried all of these ideas...but thought I would mention what worked for me, as it took 2 months for me to get things under control. In the last 2 months, I have only had 1 leak, and it was a faulty bag....the seams had holes in 3 places, so it was a fluke.

Good luck,,,,and please feel free to PM me with ANY questions....

Tammylayne

[BrownBagger]

I'm one of the rare souls who got reversed before chemo, albeit only 4 rounds of Xelox. I didn't have any problems beyond the "normal" adjustment to the new plumbing. That was pretty uncomfortable, but by the time I started getting chemo, it was pretty manageable and the oxi didn't give me a lot of digestive problems. Some people do get a bad digestive reaction to the juice.

My reversal was mid August 2009 and I started chemo in early October of that year.

Getting chemo wasn't my favorite part of having cancer, but I wasn't crazy about having an ostomy for 10 weeks, either, so I was pretty happy about the reversal. Good luck with whatever you decide to do.

[Deb1957]

Thank you for all your help!

I cancelled my appt with my surgeon this morning after reading your posts. Just seems like I would be going from bad to worst if I did the surgery now.

I received some sample bags from "Coloplast" in the mail yesterday to try. I was told to avoid Oranges but never tomatoes. I have also been drinking the lemonade Gatorade. Maybe a few changes will get me through this part.

Thanks again
Debbie

[Cj51]

Debbie,
About 4 rounds into my chemo, my appliances stopped sticking to my skin. It was absolutely maddening. IMy ostomy nurse said she had seen this before with chemo, though the onc said he hadn't. I had been using a Hollister system with adapt or eakins seals, and had no problems with it until then. My ostomy nurse gave me some samples of Hollihesive to try and those worked. They stuck! It's a 4X6 sheet of adhesive that goes next to your skin, then your appliance goes on top of it. We used Cavilon no sting spray underneath, and some special dressings on the raw/bleeding areas. It worked when nothing else would. If you have not already tried it, you could call Hollister for some samplesor ask your ostomy nurse if they have some. After awhile, the toxicity build up was too much and my Onc reduced my doseage of Xeloda (oral version of 5FU). Three weeks later, things began to stick normally again. They might have worked again sooner, but I was too chicken to even try before then. Perhaps you are having a similar problem with the 5FU.
Best of luck. Leaky pouches are no fun, but perhaps there is a solution. I would absolutely try some of the other sites that are more "ostomy" focused, people there have more experience with this sort of thing.

Cj

[Terry]

I would be very surprised if your surgeon would do that before your off it for awhile. Try and hang in there, you want to be in the best shape possible for surgery.

[GreenLakeGirl]

Are you wearing an appliance with a belt? I changed to a convex style with a belt, and that helped lessen my problems. Also, Gatorade is pretty sugary so it will contribute to watery output (which will wear out the seal faster). I'd move away from the Gatorade and try for straight water, as dull as that is for some folks.

Keep posting if things aren't getting better.

[jjlist]

i had an ileo for 10 months. i usesd a convex coloplast one piece pouch with a belt . and i used the skin prep. i dont think the skin prep helped with adhesion. it was more of a protection thing for irritation. when i was in the hospital right after surgery, i had leakage probelms for the first 5 days. when a senior ostomy nurse visited me, she said i needed to use a convex seal which i wasnt using. after that , I had pretty good success. also, sweating or physical exertions detoritiated the seal. I only did brisk walking when i had enough energy which wasnt often enough, damn OXI sapped most of it. One week i had a problem with 3 leaks in a row. I had another box of pouches and went to that one. and there was no problems. there was something wrong the the pouches in the problem box and i discarded them. i had to cut the stoma hole and it is very important that the hole is the right size. the hole has to be up against the stoma with no gaps. too small is just as bad because the seal does not stick to the stoma. try and seek out a good ostomy nurse for expert advice
good luck
Jim

[Surroundedbylove]

Good comments above about avoiding sugary foods/drinks. The acidic food/drinks and sugary things did break down the seal. If you think about it anything that would enhance diarrhea would cause a more watery output and the more liquid the output the quicker the seal breaks down.

The "normal" changing time when you have an ileostomy is about every 3-4 days - especially during chemo when you are likely to have watery output. I think I usually changed the appliance every three days. If you can change your diet and get to the point where you can go 3 days don't try to go longer as the seal may be compromised - see if you can consistently get to the 3 day point.

Best of luck to you.

SBL

[nicola smith]

Good comments above about avoiding sugary foods/drinks. The acidic food/drinks and sugary things did break down the seal. If you think about it anything that would enhance diarrhea would cause a more watery output and the more liquid the output the quicker the seal breaks down.

The "normal" changing time when you have an ileostomy is about every 3-4 days - especially during chemo when you are likely to have watery output. I think I usually changed the appliance every three days. If you can change your diet and get to the point where you can go 3 days don't try to go longer as the seal may be compromised - see if you can consistently get to the 3 day point.

Best of luck to you.

SBL

my experience on Folfox6 was quite different...notwithstanding my watery ileo output, I only needed to change weekly and, even during chemo, found that foods like mashed potatoes and pasta would thicken the output (although in many ways the liquid output is easier to deal with imho). Also I drank a lot of lemonade as it was about the only drink that still tasted ok.

I used the convex Hollister New Image two piece drainable appliance with no problems.

One has to find out what works and it is great to know that there is a range of situations/solutions and they are all 'normal'.

[BrownBagger]

Also I drank a lot of lemonade as it was about the only drink that still tasted ok.

Me too, except I called it "razorade."