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Posted 11/11/2006 4:20 AM (GMT 0)
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
Posted 11/12/2006 4:20 AM (GMT 0)

Delphi123 said...
Dear friends:

I had surgery for colorectal cancer on Aug 22
I recently heard about colostomy irrigiation and I am very interested. Should a macrobiotic diet prevent me from colostomy irrigation? 

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. 

Benjamin

Welcome to Healing Well, Benjamin! 

My APR surgery in Feb'06 for anal cancer, resulting in permanent colostomy, sounds very much like your situation - except I didn't need chemo/rad.  I'm doing great - swam all summer, etc, much like before my diagnosis.  I did macrobiotic years ago, but that was so long ago I can't attribute to it.

Your behind will be fine with a little more time.  Make it a point to sit on flat, solid, surfaces ... no fluffy pillows or donuts, otherwise you could have too much stretch which would allow your innards to drop further into the new rectal cavity.

The only suggestions I would have about abdominal pulling would be #1, your muscles are healing, #2, you've gained enough weight to increase the distance between abdominal wall and stoma, and #3, the developing scar tissue inside is causing some restrictions.

I've purchased my irrigation kit, but have been travelling a lot this summer and haven't taken the time to use it.  I don't know that your diet would be a major issue.  There are a lot of irrigators on Ostomyland who could better answer your question; or perhaps Shaz, whose friend wrote the complete how-to guide.  It's a matter of training your bowel with regular irrigation.  Whether you'd get 24/48 or more hours without output is questionable - but 24 hours just wearing a patch (like a big band aid) or a stoma cap, would be a blessing!

Good Luck!   :-)

Posted 11/12/2006 4:52 AM (GMT 0)
Hi Ben

I think we've chatted before in Ostomyland :) I still haven't been able to find any irrigators who are on a macrobiotic diet for you but I guess the only way to find out if irrigation will work for you is to try it out for a couple of weeks.

The 'pulling' that you're feeling is probably just healing. As time goes on, it will feel like it's pulling less and eventually go away altogether.

You'll probably get what's known as 'phantom rectal pain' which is much like when someone loses a limb but can still 'feel' it there. In this case, you may still get the urge to go to the loo in the old way even though you know it's impossible. Your body has to adjust to it's new plumbing. The good news is that it eases over time and eventually goes away completely but this can take 3 - 4 years for it to disappear. The only way I know of easing it is to go and sit on the loo even though you know nothing will happen.

Hope this helps and hope to chat with you again soon.

Shaz
Posted 11/12/2006 6:18 AM (GMT 0)
Dear wmnak and Shaz:

A million thanks for your detailed information and invaluable advice. A few comments:

First, Shaz is right: I have been feeling "phantom rectal pain" for some time. In fact, that is the very phrase that came to mind. Good to know that that is all it is and that it will go away in time.

Secondly, I have located a colostomy irrigator in Chattanooga, TN, not far from Knoxville (where my wife and I live). She will come here in January to experiment with her own special brand of colostomy irrigation. Because it is an experiment (which, if successful, she hopes to market), it will cost me nothing. She has had many years of experience with colon irrigation and is interested in extending her work to colostomy irrigation.

Third, my special thanks to wmnak's report and advice: Thrilled to know that the pain in my behind will eventually disappear and that I need to sit on a FLAT surface (and not on a pillow -- I just got rid of my pillow as a result) and will also avoid those velvety, soft cushioned couches when we go out. I understand that I need to toughen the skin on my behind. Will do. Also, very glad to know that the abdominal pain is a symptom of healing, that the muscles that were cut open have to heal and that this will take months or more but that eventually the pain will go away. That is all I need to know. Very thrilled to find out the cause and prospect.

One last thing: I have no problem urinating normally (no need for the catheter any more), but I tend to go to the bathroom too often. My urologist said that this is probably because my abdominal and bladder muscles are not strong enough yet to allow me full control of my urinating. Still, I can control things quite well. At night, my body wakes me up 5 or 6 times. No peeing on myself. I just get up and go to the bathroom and go back to sleep until next time. By the way, while my leg muscles are fine, my thigh muscles are still somewhat weak (even though I do take a 2 mile walk every day -- with some difficulty).

Question: Did you have this kind of urination problem and did it also go away after a while? Do you believe that the cause for this too frequent urination is the one I gave?

By the way, I have been wearing Depends since my operation. Never had to actually "use" it. Just in case. Do you think I should abandon it and wear normal briefs as part of my therapy?

Thank you both so much.

Benjamin
Posted 11/12/2006 4:27 PM (GMT 0)

Delphi123 said...

Question: Did you have this kind of urination problem and did it also go away after a while?

By the way, I have been wearing Depends since my operation. Never had to actually "use" it. Just in case.

I had a leakage problem after surgery.  Not frequency, or urgency, but there always seemed to be a bit left after going to the bathroom.  Urologist called it a "pressure leak" - would appear when bending over, coughing, or some other movement that would squeeze the bladder.  Considering how much the surgeon had to move stuff around inside to get to and remove the rectum and anus, I figured the bladder was replaced with a wrinkle in it or something, some where that would collect a bit of urine.  I also had stints in my uretha during surgery and didn't know if that may contribute to the leakage.  Ultrasound showed that the bladder was emptying properly, even tho I! knew there was some left.

Panty liners have worked fine for me.  I was given an Rx for frequency/urgency, but abondoned it after a few days - seemed to dehydrate my bowel and I wasn't willing to put my brand new stoma in a position to deal with a firmer output.  Medication may be an option for you.  My panty liners have been sufficient protection ... AND ... at almost 9 months post op, there is considerably less leakage,  If progress continues, I doubt I'll need the liners much longer.

Glad to know you are in Knoxville and have connected with someone to help with irrigation.  We are in North AL during the summers and I look forward to knowing what this lady has to offer.  Please keep us posted.   :-)

Posted 11/12/2006 5:52 PM (GMT 0)
Dear wmnak:

Thanks so much for sharing your urinary experiences with me. My situation is also improving and I'll just let Mother Nature take care of things: Here is June Drennor's web site. Feel free to contact her:

http://www.stillpoint-inc.com/

Benjamin

Posted 11/14/2006 6:31 AM (GMT 0)

Many Thanks!

:-)
Posted Today 9:37 PM (GMT 0)
Dear friends:

I had my test run of colostomy irrigation a few days ago. It was administered by a registered Ostomy nurse.

Bottom line: it works very well but it is disgusting. You have to sit facing the toilet for at least a half hour while you watch your @#%$ pouring out of your stoma. Not much fun. Utterly disgusting. So I've opted out of it.

Instead, I got my colostomy liners today from Colomajic Liners (through their reseller Edgepark.com). Just tried it and replaced a full liner with a new liner. The liners are strong but very thin. You are not even aware of them. Main thing: they are FLUSHABLE. That is, they are made to be flushable. Tried it. Works perfectly. This way, I only need to replace the colostomy bag once a day. Instead, I replace the liners, which are very cheap (300 liners for $60 plus $6 shipping). Highly recommend them.

My thanks again to Jon of the OstomyLand Forum for this all-important tip.


Benjamin

Posted 9/3/2009 2:29 PM (GMT 0)
HELLO GOING ON FOR RECTUM SURGERY NEXT TUESDAY ITS GONNA BE A LONG SUGERY THEY ARE SAYING WITH MY COMPLICATIONS SUCH HAS A KIDNEY AND PANCREAS THAT ARE TRANSPLANTED WHICH THEY HAVE TO WORK AROUND TO PUT MY COLOSTOMY IN SO I HERE TRYING TO FIND SOME ONE IN MY SITUATION OR CLOSE TO IT IM 36 YEARS OLD HAPPILY MARRIED WITH A GREAT HUSBAND WHOS ON MY SIDE ALL THE WAY THROUGH WHAT EVER THIS COLOSTOMY MIGHT BRING I HAVE RECTUM CANCER SO THIS HOPEFULLY WILL GET IT OUT OF ME AND I CAN GO ON TO DO THINGS I LIKE LIKE VACATIONING SWIMMING AND ALL THE FUN STUFFF

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