Question regarding post ostomy takedown

For discussing ostomies that are intended to be temporary, and the reversal/takedown of such ostomies.
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CarolC
Posts: 3
Joined: 2016-07-31 16:07:21

Question regarding post ostomy takedown

Post by CarolC »

I'm new here. I wish I had thought of looking for a board like this while I still had my ileostomy!

Three years ago I was diagnosed with breast cancer and had six months of chemo. During the last several weeks of chemo I became constipated and couldn't seem to find any relief. Eventually my oncologist referred me to the ER. I knew I had diverticulosis and a fibroid tumor, but somehow the combination of those things and chemo caused me to develop a bowel obstruction. I had surgery five weeks after my last chemo, and ended up with an ileostomy. I had it for a year. There were many complications after having such a massive surgery while my body was weakened from chemo....the surgical incision became a wound, the ileostomy leaked to the point where my skin became raw, I developed a fistula...including the first surgery I had three in the space of a year.

My ileostomy was closed in March of 2015. It was difficult in the beginning, but things finally settled down. The colo-rectal surgeon said it might be a year or a year and a half before things got "normal." My plastic surgeon (one of the most compassionate doctors I've ever encountered) said in my case it might be two to two and a half years.

Right now I'm at one year, four months. My bowels seem to be up and down. Usually I go several times a day. Some days it seems to never stop, and it's frustrating but I figure it's just par for the course. Then there are days like today. Regular bm, then the constant feeling of needing to go, but nothing happens. Is that normal?
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: Question regarding post ostomy takedown

Post by To Good Health »

Carol, I can't answer your last question but wanted to greet you and welcome you to the board. Yes, too bad you didn't find us before. Has anyone mentioned immodium to you? It slows passage of food through the bowels. I believe it's non prescription. There is something else which is prescription but I'd have to look it up! I know I took both at one stage post reversal/takedown.All the best
TGH ps Not a lot of people come here compared to the general ostomy board. You are welcome to post there too.
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
CarolC
Posts: 3
Joined: 2016-07-31 16:07:21

Re: Question regarding post ostomy takedown

Post by CarolC »

Thanks To Good Health! I noticed the other boards had more interactions, but I posted here since it was specifically about after ileostomy take down.

I'm afraid to try Immodium for the simple reason that it seems like a cycle for me. From overboard to almost constipation. On the other hand, I'm told that if I'd taken Colace every day once the constipation started I might have avoided the bowel obstruction. So, if it continues I might give it a try. Thanks for your input!
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: Question regarding post ostomy takedown

Post by To Good Health »

Hi again, Carol. Very frustrating since it seems to cycle. I enjoy eating 2 or 3 'bite sized prunes' most days - right from the bag. It might help or you might be afraid to try since you often have the opposite of constipation. Good luck,
TGH
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
Windchimes123
Posts: 1
Joined: 2016-06-09 19:52:15

Re: Question regarding post ostomy takedown

Post by Windchimes123 »

I'm new also :)
What do you think of microwaved warmed up prune juice with a dose of Milk of Mag mixed in ?
The MOM will provide the laxative and so are the prunes.
Warming them up to coffee temp will stimulate your bowels with the warmth.
Good luck...
CarolC
Posts: 3
Joined: 2016-07-31 16:07:21

Re: Question regarding post ostomy takedown

Post by CarolC »

Thanks! I might give the prunes a try....they are quite tasty! And warming up prune juice is a good idea, I might try that too!
snowyinMINN
Posts: 19
Joined: 2015-04-24 17:58:03

Re: Question regarding post ostomy takedown

Post by snowyinMINN »

Hi Carol, I am 10 months since take down, (I had illleostomy 13 months) due to colrec cancer. I have some of the same issues you have.with frequency and also sometimes urgency. What my surgeon recommended was Meta Mussle and high fiber diet which has helped some. Last time I went in she recommended Immodium as needed I take half a pill in morning any more than that constipates me. things have improved but still not good. Once I eat I rarely leave the safety of my house (bathroom) My surgeon tell me there are more things to try. I hope you can figure out what works for you, so far I have not.
best wishes ,
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: Question regarding post ostomy takedown

Post by To Good Health »

Hi snowyinMINN and windchimes (a big welcome to you)
I remembered the name of the prescription drug which slows the bowels down (lomotil) if that is what anyone needs. Snowy, I'm sorry that you can't leave your house once you eat - that's not good. Ask your surgeon what else you can try.
How are you doing CarolC?
TGH
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
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SandyRN0224
Posts: 199
Joined: 2009-05-17 17:49:35

Re: Question regarding post ostomy takedown

Post by SandyRN0224 »

I'm only 6 weeks colostomy takedown/hernia repair post op but I do have the feeling like I've got to go even when I don't. I think it's most likely that my rectum and anus are trying to get used to stool passing their way again. It's not constant but it's there enough that I understand.

As for regulating the bowels fiber is a good option. It works for both constipation and diarrhea. I take pain meds every day and that can cause constipation. Trying to find the fine line of how much and how often to take these things can cause major headaches but I think it's just part of the process. It's been since 2009 that stool passed this route so it's not going to be overnight to get it all perfect. You know...that one satisfying morning bm after a cup of coffee. HaHa. If I ever get to that point I'm not sure what I'd do. Laugh uncontrollably while explaining that I now have the perfect bm routine!!!
Emergency colo for rupture 4/18/09
Crohn's. takedown/hernia repair 8/3/16
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SandyRN0224
Posts: 199
Joined: 2009-05-17 17:49:35

Re: Question regarding post ostomy takedown

Post by SandyRN0224 »

Ps....I take miralax every day and colace as needed. Also, I keep 500mg magnesium citrate tablets on hand. It's the stuff in the milk of mag but much cheaper with the same benefits.
Emergency colo for rupture 4/18/09
Crohn's. takedown/hernia repair 8/3/16
Lvatrout
Posts: 2
Joined: 2016-09-30 12:47:51

Re: Question regarding post ostomy takedown

Post by Lvatrout »

Did you have colonoscopy reversal and hernia repair at the same time? I have incisional and parastomal hernias. It is too soon for the surgery- I am having a revision next week. But my doctor made it sound as though it would be difficult to find a surgeon who would do both the reversal and the hernia repairs, and he also said it would be difficult to get doctors to tag team in the OR. Did you have a general surgeon or a colo-rectal surgeon to do both surgeries at the same time?
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SandyRN0224
Posts: 199
Joined: 2009-05-17 17:49:35

Re: Question regarding post ostomy takedown

Post by SandyRN0224 »

I did have both at the same time! I had a colo-rectal surgeon and a general surgeon that specializes in extreme hernias. I had a parastomal hernia, an incisional hernia and an umbilical hernia. The main hernia was the parastomal hernia was the largest by far but they all caused issues for me. I was so sick for the year prior to surgery I went back and forth between being ok and having severe blockages. It got so bad that I was hospitalized with a PICC line for TPN and lipids along with potassium and magnesium infusions. I was malnourished and my potassium was so low it was dangerous. I would vomit for 6-8 hours so forcefully that my retina was on the verge of tearing. I still see a flash of light on occasion in the far corner of my right eye.

In the hospital trying to get me healthy enough for surgery the colo surgeon got in touch with what he called a "world renowned hernia surgeon ". I'm not sure about that but I was thrilled they were collaborating on my case. They got me healthy enough that my labs were not deadly anymore (potassium levels), took that nightmarish NG tube out and sent me home til they could get their schedules together. I had a 4 hour surgery 8/3/2016 with biological mesh. Hurt like CRAZY those first days and the ostomy hole is left open to heal from the inside out. I got nerve shocks as that tissue started healing. But, once I got home things slowly started working. I had rectal spasms from hell and a few accidents. I will say, however, it was all worth it. That huge hernia is gone. I have normal bm's through the regular way. I can EAT and not be terrified I'd have another blockage and vomit like the exorcist for hours st a time. There were not so fun things at first but it's worth it!

I'm in Charlotte NC. If your colo surgeon isn't willing to set things up with a general surgeon you need a new surgeon. I'm not the only person who has had this done in tandem with two surgeons.

If you have any questions please feel free to ask. It's not all roses but most surgeries aren't. I do wish I'd done it years sooner.

Hugs!!!
Emergency colo for rupture 4/18/09
Crohn's. takedown/hernia repair 8/3/16
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