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Colostomy And Normal Life

Dear friends:

I had surgery for colorectal cancer on Aug 22 and have been recovering nicely since then. Since the tumor in my descending colon was too close to my rectum, the surgeon decided to remove my rectum and replace it with a colostomy. Prior to surgery I had full radiation treatment (23 sessions). Everything went well, the effects were temporary and I am left with 6 of the original 7 feet of my colon. I use a colostomy bag (which can be quite expensive, as you all know).

After two months I still feel pain in my abdomen and of course my behind was sealed and I guess a lot of this is a matter of adjustment. I have solid stool, and I consider myself lucky to be alive, etc. etc.

I recently heard about colostomy irrigiation and I am very interested. I talked to my surgeon and nurse about it. The main issue, they said, is that I am on a strict macrobiotic diet (and have been since Dec, 2005 and I attribute my strong immunity and perhaps my survival to it). They said that for a colostomy irrigation to work I would have to switch to a more normal diet so that I would only have one or two bowel movements a day instead of the frequent ones I have right now as a result of my macrobiotic diet (plus lots of white fish). Actually I eat two or three meals a day and each one is followed by a big bowel movement (sometimes in the form of two or more colostomy bags).

Is anyone on the forum on a macrobiotic diet or knows enough about it to answer my question? Should a macrobiotic diet prevent me from colostomy irrigation?

TI would very much appreciate it if you could share some of your experiences with me.

I am told repeatedly that a colostomite can live a normal life, even including swimming, hiking, etc. etc. And that’s with colostomy bags. Naturally, colostomy irrigation would make it even better.

It’s been 10 weeks since my operation. Fortunately, due to the excellent medical team at Knoxville’s Baptist Hospital, I survived everything as best as can be expected: no metastasis anywhere, local or distant, no lympth nodes. The surgery was preceded by radiation, which killed my rectum and the tumor inside and the multiple lymph nodes in it. All tests, including a PET scan showed that there was no trace of cancer in my body.

I attribute much of that also to my macrobiotic diet, which I have been following since Dec, 2005, when I was first diagnosed. It has given me a very strong immune system, and that is probably what protected me from metastasis until my operation. It also helped to protect my colon during the 5 weeks of radiation.

I have been making a lot of progress, and I thank God for that. I walk two miles every day (though with some difficulty since my thigh and arm muscles have lost their muscle tone — I lost 70 lb before surgery, down from 175 to 105). I am now gaining weight (I now weigh around 120).

My surgeon’s nurse says that if I walk 2 miles a day I will be getting my physical therapy and that my thighs and arms will fill out and return to normal strength but that it may take as along as a year. Others have said the same thing.

All of that is fine and good, but there are two issues that I am unclear about:

1) Because my rectum was removed, my behind was sewed up, that is, sealed. I feel constant low-grade pain when I try to sit or walk. My question: will my behind eventually stretch and adjust and feel completely normal?

2) I feel as if something is pulling me up front where my stoma is. My surgeon says that my stoma had to be surgically attached and that is why I feel that it’s pulling me inside. Again, I am wondering what your experiences have been? My surgeon says that the stoma has to adjust to my body and organs inside and vice-versa and that this will eventually happen.

From your experience, will it? It doesn’t matter if it takes a year. The question is: can I look forward to an end to the pain both in my behind and in my stoma? If so, then this will make a big difference and allow me to put up with the temporary situation.

Thank you all so very much and thank you for your moral support.

Benjamin

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Colostomy And Normal Life

The Anatomical Apron By Joy – Colostomy Demonstration

We are proud to present Joy Hooper’s video on ‘What is colostomy?’

From Joy:

As a Certified Wound, Ostomy & Continence nurse, I feel that I have been given a very unique calling and duty to provide care and education to patients and their families. I view my nursing as my own personal ministry, and it is by far the most meaningful and enjoyable challenge that I have ever had. I thoroughly enjoy every minute that I spend giving patient care, teaching, and helping my clients adjust to and overcome the changes that have occurred in their lives. From this end, I am always looking for ways to make my patients’ lives just a little bit easier and for ways that they might better understand what they need to do to move on with their lives despite their health problems.

The Anatomical Apron by Joy!! was conceived as an educational tool which helps patients and others understand the physiologic and structural changes that take place when ostomy surgery happens. Many have already found it to be extremely useful for bedside teaching and in classrooms, and I sincerely hope that you will enjoy using it as much as I have enjoyed developing it to share with you.

MedicalCraft is a small, home-grown company but we have plenty of big ideas which we are currently busy with. We hope to have more unique projects to add to our line of healthcare, instructional, and geriatric items very soon. We look forward to hearing from you about any of our products, and we certainly welcome any suggestions and ideas that you may have!

Joy Hooper, BSN, RN, CWOCN

Here is a link to the Anatomical Aprons website.

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The Anatomical Apron By Joy – Colostomy Demonstration

Urge Incontinence And Colostomy Surgery

Hello I’m Richard. I am a relatively new member, but also new to using this message board. I really need some help please.
I’ve had my colostomy a long time and am used to living with it now. However, I suffer from Urge Incontinence, which was caused by the colostomy surgery. I’ve got by with a good system for coping with it, but it’s worsening. I’ve got the medical side covered, been seen by urologist and about to be seen in the continence clinic, but feel it would really help if I could chat with others who are in the same situation. I find that wearing a nappy, as well as a colostomy pouch can be a bit hard sometimes.
This has been hard to post, because I find it embarrassing, but I believe that I can’t be the only one on a site like this.
If anyone can help, I’d love to hear from you please.

Thank you again and best wishes
Richard

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Urge Incontinence And Colostomy Surgery

Girls Aloud Star In Colostomy Call

Interesting! There is a lot of publicity nowadays …

Girls Aloud star Nadine Coyle has said she wants to help "smash the taboo" that surrounds people who have to wear colostomy bags.

The singer, who is launching a solo career later this year, said the "pretence of body perfection" makes it difficult for patients recovering from bowel surgery to feel sexy or confident.

Ms Coyle spoke out after her friend, hairstylist Connor Grant, had an operation in January which left him needing a colostomy bag for the rest of his life.

She said: "This was a big worry, especially in our industries where there is so much pretence at body perfection.

"I was amazed at the negative connotations that surrounds people with a stoma and also shocked at the lack of exposure in the mainstream media. This is one taboo which I am right on board in helping to smash."

The LA-based singer has agreed to be a celebrity ambassador for "designer colostomy knicker" company Vanilla Blush.

The company was founded by Glasgow-based Nicola Dames after she had major bowel surgery in 2006 which left her needing an ileostomy bag.

The 33-year-old wanted to help men and women who have had bowel surgery to cope with the aftermath of treatment and rebuild their confidence with "sexy" underwear and swimwear, turning a "medical problem into a fashion challenge". Her underwear comes with a built-in pouch to conceal the bag.

Ms Coyle said: "Nicola has turned people’s lives around with her underwear. You can still look and feel gorgeous whilst having a colostomy or ileostomy."

She is now set to appear at a nursing conference in Arizona in the US with Vanilla Blush models to promote the firm. Nadine will be giving away one of her tops and write a letter to the people who give the largest donation to a fund to raise the £6,000 needed to take the models to the US. All other donations made will be given to charity.

Here is the original:

http://www.pressassociation.com/press-office/press-releases/perlego-trials.html

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Girls Aloud Star In Colostomy Call

Pending Colostomy For FI And Surgery For Prolapse Bladder

Hi Peeps
I hope someone can put me straight on this topic. I will at some stage have to have a colostomy for enduring FI following multiple surgeries on rectum for disease and recurrant fistula. I have now been told I have bladder and bowel (no suprise there) prolapse. This means the clock is starting to tick for an op of sorts.

Will they do the bladder hook up op at the same time as the colostomy? I would much prefer it if it was all done in one hit but have not had the chance to speak to my surgeon yet.

I cannot see the point of me having one proceedure left till later unless there is some dark medical knowledge I have not been made aware of.

Just to be clear I still have my uterus and do not want to get shot of it.(yet).

I would be expecting my bladder to be back to normal function and the colostomy to do the rest.
Not that I am asking for the sun, moon and stars, but I was hopeful that this could all be done by keyholes rather than the big midsection? Ok so I still have abs I do not want distroyed, a girls gotta have some vanity issues amongst all the bodily fluids.

All information very welcome.
Thanks

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Pending Colostomy For FI And Surgery For Prolapse Bladder

I Was Told Today That I Need To Have Surgery And A Colostomy Bag. I Am A Ultra-newbie.

Hello,

Are there any things I need to be advocating for with my surgeon that will make life better with a bag? Don’t really know what is possible so Im asking what you have already found out. If you are wearing one, you know what you wish you knew before you got it. 

Thank you for sharing whatever info you can. Full of doubts and fears, but I have accepted that its happening.

I am currently very active. Swimming, sailing, bike riding and surfing. An energizer bunny type.

Its such an intimate subject I really do appreciate that you are sharing your own thoughts on it with me.

The Ludicrous Frog

 

1 Replies:
I Was Told Today That I Need To Have Surgery And A Colostomy Bag. I Am A Ultra-newbie.

Colostomy Reversal Guidance Needed

Had a colostomy 5 months ago due to grade 3 sigmoidocele causing complete elimination obstruction. Sigmoid was removed, but the rest of the colon remains. Resection was not done at the time due to severe malnutrition.   I have had ZERO quality of life since then, although it is outputting  fine, this pouch and maintaining it  & the stoma has completely taken over everything I do, along with the near constant discomfort of wearing this pouch. I cannot live like this! Doc seems anxious and enthusiastic (almost too much so)   to do a reversal. Have gotten a 2nd opinion which agrees with that of my surgeon, for the most part.  All I’m hearing is the negative possibilities, neither doc has really given me anything positive to hold on to, but perhaps they are just trying to keep my expectations in check.  I want to get rid of this bag and return to a normal life, but . .  will that happen?  I must have it done IN JUNE to allow recovery time prior to my seasonal business kicking in , so I must make a decision on this quickly in order to schedule the procedure.  

What am I in for? How long in the hospital?  How might my condition be during the transition? Will my life return to ‘normal’ as in when my digestion was working normally?   I have NO HELP at home, I live alone, will I be able to handle the recovery?  I need as much guidance as you all are kind enough to provide. I am terrified of doing this, but more terrified of living another year, or even the rest of my life as I am. 

 

I am meeting with my surgeon again tomorrow (4/19) to hopefully get more details, but I need to be sure I’m getting the right info and asking the right questions.  Thank you !

1 Replies:
Colostomy Reversal Guidance Needed

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