The Colon Club

Hello. It has been a while since my last post on my mum.
She is now having her Chemo break at home, which made her reconsider the reversal of stoma.
Her tumor was very close to anus. The doctor said she is lucky enough as he got the skill of helping this kind of patients and it is possible for stoma reversal.
She has been using the stoma for almost one year as the surgery was in last August. She was then told to be stage 4 and started folfox.
As she is now having her chemo break, she is considering whether it would be better for her to reverse the stoma back.
We are extremely worried, however, as we do not know if she is going to start chemo later (we hope not sincerely) and her eating habit must be carefully manage.

My problems are
1. How long does it take for one to get used to reversal? I have heard that it is difficult to control stool coming out.
2. How do you manage your eating habit?

Thank you so much for any experiences and inputs. We appreciate any comments.

Sorry for my grammar since I am not a native speaker.

I believe she had rectal cancer? Some people it takes a while to adjust to the new plumbing when dealing with rectal cancer.. Me I have a permanent colostomy because radiation destroyed my rectal muscles. Best decision i made. I can honestly say it gave me my life back. Thanks to chemo and radiation, I go from firm stools to liquid in one bowel movement. But thank to my stoma, it's under my control and not my bowels.

My 2 cents, since she is dealing with stage 4 and more chemo to come, keep the stoma. Chemo will give you the runs. Throw in adjustment from reversal, she could be tied to toilet for a very long time . . .

Lee

It all depends on how much rectum she has left and damage done during radiation. Every person is unique. I was back at work a month after my reversal surgery. I started seeing a pelvic physical therapist before my surgery and continued with her for several sessions afterwards. The tools she gave me have really helped me to gain control of my bowel movements. I still have my bad days, if I try a new food or my stomach gets out of whack for some reason, but in general I only go an average of 3 times per day. Right out of reversal I was going about 20 times a day. I still wear diapers for now, I've told myself that if I can manage a month without an accident I can switch back to regular underpants with a pad (I'm at 10 days, currently).

Aqx99 wrote:It all depends on how much rectum she has left and damage done during radiation. Every person is unique. I was back at work a month after my reversal surgery. I started seeing a pelvic physical therapist before my surgery and continued with her for several sessions afterwards. The tools she gave me have really helped me to gain control of my bowel movements. I still have my bad days, if I try a new food or my stomach gets out of whack for some reason, but in general I only go an average of 3 times per day. Right out of reversal I was going about 20 times a day. I still wear diapers for now, I've told myself that if I can manage a month without an accident I can switch back to regular underpants with a pad (I'm at 10 days, currently).

I need to look into finding this kind of specialist as I'll be there in five months. I also need to find a source for diapers as I like to be prepared.

If I were stage 4 and more chemo was likely, I'd keep the port and the illeostomy. Anyone that's had a bag for a while knows the consistency that goes into it and that it can vary and change quite a bit from hour to hour.

NHMike wrote:

Aqx99 wrote:It all depends on how much rectum she has left and damage done during radiation. Every person is unique. I was back at work a month after my reversal surgery. I started seeing a pelvic physical therapist before my surgery and continued with her for several sessions afterwards. The tools she gave me have really helped me to gain control of my bowel movements. I still have my bad days, if I try a new food or my stomach gets out of whack for some reason, but in general I only go an average of 3 times per day. Right out of reversal I was going about 20 times a day. I still wear diapers for now, I've told myself that if I can manage a month without an accident I can switch back to regular underpants with a pad (I'm at 10 days, currently).

I need to look into finding this kind of specialist as I'll be there in five months. I also need to find a source for diapers as I like to be prepared.

If I were stage 4 and more chemo was likely, I'd keep the port and the illeostomy. Anyone that's had a bag for a while knows the consistency that goes into it and that it can vary and change quite a bit from hour to hour.

I actually wear the generic ones that Walmart sells. They are comfortable enough that I don't feel like I am wearing a diaper, and have never once leaked when I had an accident. I obviously can't vouch for the men's version, but it would be worth a shot to save yourself some money.

Aqx99 wrote:

NHMike wrote:

Aqx99 wrote:It all depends on how much rectum she has left and damage done during radiation. Every person is unique. I was back at work a month after my reversal surgery. I started seeing a pelvic physical therapist before my surgery and continued with her for several sessions afterwards. The tools she gave me have really helped me to gain control of my bowel movements. I still have my bad days, if I try a new food or my stomach gets out of whack for some reason, but in general I only go an average of 3 times per day. Right out of reversal I was going about 20 times a day. I still wear diapers for now, I've told myself that if I can manage a month without an accident I can switch back to regular underpants with a pad (I'm at 10 days, currently).

I need to look into finding this kind of specialist as I'll be there in five months. I also need to find a source for diapers as I like to be prepared.

If I were stage 4 and more chemo was likely, I'd keep the port and the illeostomy. Anyone that's had a bag for a while knows the consistency that goes into it and that it can vary and change quite a bit from hour to hour.

I actually wear the generic ones that Walmart sells. They are comfortable enough that I don't feel like I am wearing a diaper, and have never once leaked when I had an accident. I obviously can't vouch for the men's version, but it would be worth a shot to save yourself some money.

I will look into them. Thanks. I actually tried finding these on Amazon when I was going through radiation and could only find stuff for incontinence. It turned out that I didn't need something that heavy for the radiation but I wanted something just-in-case.

Thank you for all your inputs.
My mum and I are going to meet the surgeon in Wednesday, and we are quite sure he is going to ask my mum to have the reversal.

My mum is now 50-50 as she knows life will be tough after the reversal , but she wants to get rid of the stoma.

Comments here are realistic and true. I will challenge the surgeon if I have to. Our decision is to visit the surgeon first.

My reversal was the best thing I did. I don't think I could live with a permanent stoma, but im young and love the beach. So no emptying my bag in the water anymore as emergency's and the stares. omg the stares.. The reversal is hard, and the first couple of weeks to months is very difficult, with urgency and clustering. Even getting to the toilet on time. Its a long term healing process this one, well in my case, but im now a year out and even though I still have bad urges, ive got control and life is great. however everyone is different in what they want and choose.

I pop by his forum from time to time to honor my friend and former Colon Club member, Belle, and to provide perspective of living with a permanent ostomy.

I have a permanent end ileostomy, the result of an extensive intestinal perforation due to high dose corticosteroid use that thinned the intestinal lining. Mine was an emergency surgery so I did not have the decision algorithm that many of you face in proceeding with a reversal or staying the course with an ostomy.

What I can tell you is that the shock factor of sharing space on your abdomen with a turtleneck of intestine does soften and fade with time. For me, living with a stoma is simply no big deal. It has become as routine as wearing a pair of eyeglasses.

There is a wealth of ostomy products to choose from - literally hundreds of different wafer and pouching permutations. Taking time to find the optimal pouching system is key to living a life in harmony with a stoma. I wear a one-piece wafer/pouch combination from Coloplast that is discrete and low profile, with an elastic polymer that allows the wafer to move with the body. The pouch is a mere 5 inches in size. No one would know that I have an ostomy by looking at me, and chances are that you have walked by others with an ostomy and not been the wiser.

My friend, Belle, wrote a personal narrative about her decision to opt for a permanent colostomy that remains available on this forum for others to read . . . and to feel comforted. Belle’s three part blog series is titled: “The Colundrum of Deciding on a Permanent Colostomy” (or something similar to the title). Look at section of blog postings on the front page of this forum to access the series of writings. Belle’s narrative is a poignant piece of writing that I would encourage anyone feeling undecided about an ostomy to read. For information. For perspective. For inclusion. To dispel misinformation of ostomies.

An ostomy does NOT preclude living a full, meaningful, and enjoyable life.

In loving memory of Belle,
Karen

I loved NWGirl. I miss her.

I'm eleven years out from an ileostomy reversal and I still think about going back to the bag almost every day. It has not been an easy adjustment from the bag. I have bouts of constipation that end in episodes of "clustering" bowel movements that go on for days. I can only work from home and I have trouble making plans for any social occasions.


I have appointment in the middle of June with my colorectal surgeon. I want to talk to her about a permanent colostomy.


Ann

ams5796 wrote:I loved NWGirl. I miss her.

I'm eleven years out from an ileostomy reversal and I still think about going back to the bag almost every day. It has not been an easy adjustment from the bag. I have bouts of constipation that end in episodes of "clustering" bowel movements that go on for days. I can only work from home and I have trouble making plans for any social occasions.


I have appointment in the middle of June with my colorectal surgeon. I want to talk to her about a permanent colostomy.


Ann

I miss Belle too. I have a permanent colostomy, best decision I made. Radiation destroyed my rectal muscles, thus I was tied to the toilet any time I ate.

Have you looked into daily enemas? A lot of people on this forum have found success, and it did give them their life back.

Good luck,

Lee

P.S is not sure about everyone else but after reversal I fart extremely a lot and the smell.. omg. Work colleagues aren’t too impressed sometimes when we are in a confined space as it’s diffucult sometimes to hold in. The gym I just put my ear phones in and pretend I didn’t do it.

Still I’d rather not have the bag. I can live with the farts but other people can’t.

I’m also a heavy vehicle mechanic and when I had the bag I had it pop a few times, even playing with the young kids climbing all over accidents happen. So I’m happy with my decision. Everyone is different it’s your choice.

NHMike wrote:I will look into them. Thanks. I actually tried finding these on Amazon when I was going through radiation and could only find stuff for incontinence. It turned out that I didn't need something that heavy for the radiation but I wanted something just-in-case.

I order a box of 48 through Walmart's website. Inside the box are 3 smaller packages. The free 2 day shipping can't be beat!

I opted for a permanent ostomy and have zero regrets. I can travel and exercise and pretty much do whatever I like and never need to worry about incontinence or bathroom access. I too had a very distal lesion and although it might be technically possible to reverse many of us, it doesn't always result in a better functional result or higher quality of life. I would ask very detailed questions about the likelihood of LAR syndrome and then make the decision that works best for her...I had many people, including other survivors and providers, trying to talk me into reversal but I didn't want to take the chance that I would have long term limitations secondary to LAR syndrome

I totally agree that living with a ileostomy would not be a problem at all for me, but it is a big decision to make without knowing the outcome of reversal. I can now run, go to the swimming pool, work, eat all I want, and I am a bit worried about life after reversal. I have reversal scheduled in a week. But I wondered if a permanent ileostomy means that the colon is removed or is is it possible to keep it disconnected?

All the best

Claudia