ileostomy reversal

At least your surgeon is being realistic. I am existing without the lower 1/3 of my colon (due to cancer). I haven't had to wear depends but I've had to wear pads, for minor drips and near accidents. I also do not have my sigmoid, this is the reservoir that collects stool through out the day, and swells to accommodate stool. Ideally being released once or twice a day (folks w/o bowel disorders). Being w/o a sigmoid, I don't have a good internal place for stool to collect and back up. So I experience multiple bm's, per day, for life I'm told.

I had a temporary colostomy for 2 months, post colon resection and I sometimes think I'd be better off with an ostomy. But our insurance is inadequate so I am existing "as is", with my wacky colon.

I certainly couldn't tell you what to do but I would ask you, have you adjusted to having a temporary ileostomy? If so, seek another opinion perhaps. I also recall my stoma nurse telling me that my stoma was temporary so in hindsight had I wanted to keep it, I would have needed more stoma revision surgery anyway.

But your questions are valid. I had to go on a low residue diet after my ostomy reversal. I'm still on the diet about 75% of the time. 13 years later. The diet kept me from living 10 feet from a toilet or wearing depends. So tuck that advice away, if you go ahead with the reversal. If you changed your mind down the road, would your doctor give you a permanent ostomy? That's another question to ask. You'd have that option if the adjustment phase he cautions you about becomes too much to bear.

Finally, I have come to this conclusion - having an ostomy is certainly not the end of the world. I sometimes miss having one, even if it's so long ago now, and a blur at times to remember the details. Having an ostomy made things so much easier for me.

Personally, I think as you describe, diapers, or as I describe, depends, is worse than having an ostomy.

At least when your colon relieves itself with an ostomy, it's in a closed bag and the smell is only released when you empty the bag.

With depends, the smell is immediate.

I'm 57, near your age and again, I cannot tell you what to do, but in your shoes, I'd give having an ostomy considerable serious thought before trying to be reconnected.

For another aspect, my original surgeon moved out of town on me, 1000 miles away and I got passed to two more surgeons, one was his partner, excellent surgeon BTW but he knew how much trouble I was having so he referred me to an even better colorectal surgeon than he and his former partner combined. She's THE surgeon I want should I ever need more surgery (I'm in the Cincinnati area). As she evaluated me and examined me, she said - get dressed, meet me back in my office (I really like this approach! So much more dignity than discussing all of this in a paper gown). Anyway, I sat there and she sat there, she sighed and said okay here's why you have so much trouble. She got out a brightly illustrated journal with a picture of a normal colon. Intact. Then on paper she drew my "new" lower colon. Removing the chunk I'm missing - mainly the sigmoid area. As she finished with the diagram, she said - this right here is why you are having so many daily bm's, you don't have your sigmoid anymore. It's gone. The pulled down part of the upper colon cannot swell like the sigmoid did, it's not designed to swell like the sigmoid, so internally you can't collect stool and allow it to back up. It has to be released.

Then she grew quiet, waiting for me to absorb this and I am a literal learner, I so appreciated that hand made drawing (should have asked to keep it huh?). I broke down crying and I mean crying. Sobbing actually. She got tears in her eyes and said these words......

"Sometimes I wonder if we should even be doing these procedures".

Meaning - reconnecting people because they want to use a toilet in a normal way (not with a bag).

I never forgot her words. And since then well I've made the best of my situation. But in hindsight, I probably should have been given a permanent colostomy.

Finally, my Gastro doc whom I see for my colonoscopies swears up and down that my original surgeon did an excellent reconnect/surgery and wants me to look when I have simple Flex-sigs. He wants to point out sections that he thinks are superb. I never want to look at that! I laugh and say - no thanks.

And yet even though from a doctor's POV, I know my original surgeon did a great job patching me back together and I'm sure he was patting himself on the back afterwards, I imagined interns observing too (he said I was the "blue plate special" in surgery that day), I do sincerely wonder if I should have had a perm. ostomy (of sorts).

Don't dismiss an ostomy. As I said way above, having one is not the end of the world. I think you have more control with a bag than with reconnect.

No matter what you do, good luck. And if you have great insurance, maybe just knowing you have plenty more options than I have, you could always go back to your surgeon and say - I want a permanent ostomy, if the "diaper" stage he describes becomes too much.

I do admire your surgeon for painting a realistic picture. My surgeon did not - all he said was - this is going to turn your world upside down. I thought he meant post-op pain!

Post Edited (Marsky) : 9/19/2012 5:55:06 AM (GMT-6)

Terri,
First of all, nothing you can say about our bodies here is gross. We have all gone through this and are used to the best and worst our bodies can present to the world. Secondly, your doctor is legally obligated to give you the worst-case scenarios so you cannot sue him afterwards. The percentage of people that go through what he described is very, very small. Finally, be very skeptical about anything the doctors and nurses say. Come here to find out what people really go through and what we have found works and does not work. We cannot give medical advice but we are happy to share our experiences. Here is a summary of many things I learned at healingwell.com.

Some of the myths that get told:
"You may be in Depends for six months to the rest of your life." Fact: There are exercises you can do before the reversal to prevent that from happening. Pretend there is a stone in the upper part of your rectum. Squeeze around it as hard and as long as you can. Release and repeat as many times as you stand it. I got a little fanatical about this because I did not want to end up incontinent. I did between 30 and 90 of these a day before takedown. I learned about this from someone here and then my colorectal surgeon also suggested it.
Kegel exercises are also priceless to strengthen your pelvic floor muscles and make sure you do not develop urine leakage right after the surgery or 20 to 30 years down the road. Pretend you are holding your urine in for about 10 seconds and release. Before the surgery this exercise will be easy to do. After the surgery, it will take about a week before the pelvic floor muscles respond the way the way they use to. The first week you may want to wear Depends just to feel safe. Sometimes being continent just means how fast you can race to the bathroom. After that period is over, you may want to wear a panty liner until you feel confident about your control. As time goes on there may be bumps in the road when you resort to a Depends for a day or two, mainly for confidence after eating a food that sped up your system too much. Some people will wear panty liners for months just to feel safe or to take care of small leaks. This goes for guys too.

"You can eat anything you want to after you go home." Fact: Stick to as gentle a diet as possible. I used the Mayo Clinic Low Residue Diet as a guideline. Any time I strayed I had major problems. For me mushrooms and anything with a lot of animal fat or sugar can cause problems by creating blockages or speeding up my system too much. Cream, butter and fatty cheeses are included in the animal fats. Pizza can be very painful during the first month or two. After a few months, your body adjusts and you can start adding in foods that were previously a problem.

Some things not every doctor will talk about:
Sex-My surgeon and gynecologist both advised that intercourse is often not comfortable or safe for women up to three months after the reversal. After that, it may be a little uncomfortable at first but will quickly get better. For me it felt like I was a virgin again! It was very strange. If it is doesn't feel better, there are dilations and other things a doctor can help you do to make it more enjoyable. For men, I was told it can be anywhere from one to six months before a man has a renewed interest in sex. If he has any discomfort, he should talk to his surgeon. There are a few very rare complications that can be addressed.

The dreaded butt burn or monkey butt-Some people never get this which just amazes me. I know one j-poucher that does not even believe it is real! My second week, I developed terrible butt burn. I have extremely acidic output anyway so I started taking prescription Questran that binds up the extra acids. Other priceless tools were prescription topical Lidocaine, and over-the-counter Calmoseptine and Balneol. I bought a bidet because many recommended it to soothe butt burn. It did not help me at all. A little Balneol on toilet paper cleans better than flushable wipes and soothes the pain. Calmoseptine prevents acids from causing more damage and also soothes. Both products are available at pharmacies. During the worst times, I would place a small gauze pad with Calmoseptine on the effected area and leave it there. I would also use a panty liner just to keep my underwear from getting embedded with Calmoseptine. It is hard to get out of clothing. A bath with 2 cups of Epsom Salts dissolved in it can give you heavenly relief.

Medicines and vitamins-Some of us have malabsorption issues because our system is too fast to absorb some vitamins, minerals and solid meds. I take a liquid vitamin/mineral supplement. If you ever experience unusual fatigue, have your primary care physician check your vitamin and mineral levels. I had to experiment a little to find the right supplements. The first one I tried made me close to incontinent. I used medicinal patches for prescriptions until my system slowed down enough to handle the regular pill. Any enteric-coated pills or extended release medicines may not be fully absorbed.

Post-surgery depression and posttraumatic stress syndrome-Some people will experience this on and off for a few months. If this does become an issue you want to address, your colorectal surgeon should have a list of doctors who specialize in post-surgical depression and PTSD. This does not mean you are crazy or that you will automatically be put on anti-depressant or anti-anxiety drugs. Most people seem to be given coping exercises that help them recover faster. For many people, the anti-depressant and anti-anxiety medicines helped them return to a much happier and fulfilling life.

Individual recovery rates and experiences vary wildly. It is best to measure your improvements in months, not days or weeks. I have almost reached my third month. I am amazed at how far I have come. I could not imagine how good things could be three months ago. I am training for my first half-marathon!

I hope others will post with their opinions because we all have experienced such different things. It is normal to be scared. The best way to deal with it is to tell others here and learn how they handled it. If you weren't scared, then I would be very worried about you!

Is there a possibility you could have a j-pouch instead of a reconnect? The procedure creates a reservoir for stool to collect in until you can get to a bathroom.

I would love to give you better advise, but without knowing what initially caused your colon resection, I can't answer. Everyone is different too depending on age and circumstance. Incontinence is a major issue and yes some people prefer an ostomy. But you might be over worrying and your doctor might be giving you his 'worst case' scenario.

My logical suggestion is to maybe wait. If your hesitant, give yourself more time to figure things out. Speak with your surgeon some more, and your other doctors. Resections are so common and very successful. But some cases, where theirs been disease, this leads to further questionability as to your quality of life in either circumstance. You deserve to go into this surgery knowing YOU will have a most successful outcome.

i want to thank you i'm doing a lot of thinking on this. I'll let you know what answer I come up with.