Waiting for Surgery - Seeking Advice on Options

I have a big decision to make soon. I have almost no bowel control.There are two surgeries that I can have - a colostomy which Iunderstand isn't a really major surgery or a muscle transplanted frommy leg which is a serious surgery.

Any information would be appreciated.

You did not give the reason for your poor control.  If I were you i would seek the advice from a couple of GOOD colorectal surgens.  I would also get ahold of the Cleveland Clinic and arrange to be seen by them.

As far as the Colostemy its not the operation it self, its the emotional state it may well put you in.  Your life instead of revolving around where every bathroom is, will revolve around the ostomy.  That's not to say it is life altering, it is not.  It is however a nusance!



As far as the muscle graft, what is the success rate of that surgery?



I would like to stay in touch to see how this plays out.



Whatever you decide, my hopes and prayers are with you.



Rick.....

I will speak for myself here so please understand.............I am going to disagree with the previous reply from juno ...........I too had no contrel control for a number of years and I did live my life around the bathroom and was actually a real prisoner of such bathroom..........Once getting my Ileostomy I have been freed from the issues of embarassment, humiliation, and sheer panic at the loss of control of said bowels.....I do not live my life around my Ostomy and have gotten my life back and then some..........My life is 1000%,,,,,,Yes I said 1000%  better and you couldnt give me 100,000,000 dollars,  thats right 100 Million dollars for me to take my recutm and anus back  and give up my pouch...My Ostomy has given me life ,  and I do more now then I have ever done pre sickness as well as when I was sick.....My pouch is worth well over 100 Million........In truth you couldnt pay me enough.......Im am whole.alive, free and healthy and Yes with an Ostomy....How cool is that?.............Way cool.



Since I do not know all your medical issues I will say consult the medical establishment,  but find a doctor that doesnt look down on becoming an Ostomate.....Many doctors feel its a bad thing because they do not know just how great and life saving it can be.From there limited visual view, carrying waste on ones person sounds bad,  but when it gives you your whole life back, its agreat thing and really is only a minor issue....You can alwasy reach out to me if you have any questions..........Michael

Pastorpatricia,



What Beyondpar says has a lot of merrit to it.  It seems he may have come across doctors that were reluctant to do an ostomy, in my case the opposite was true.

The thing is if you need the ostomy you need it.  Just make sure there are no other viable aternatives.

I have a couple of friends with severe U/C.  They basically have two choices, either not eat before they leave if no bathrooms are availble. Or carry plastic bags and clean up items. However in your post you do not mention either U/C or Crohn's.

In your post you said you had chioces to make.  When I hear the word choices I think alternatives.

All I am suggesting is be sure you are getting the best medical advice.  I can assure you thru my experiences. Not all surgens are the same.



I can fully understand anyone with uncontrolable bowl movements, getting an ostomy would be a Godsend.



Keep one thing in mind, an ostomy can always be put on as last resort, because it is the cure of last resort for intestinal problems.  If a person has an intestienal problem, simply just bypass it with an ostomy, that is the prevailing thought of many doctors.  Unfortunatety There are surgens that think that way.



From what you are saying in your post, it sounds like you have a unique problem with your anus muscle.  You are suggesting there is a possible fix with a graph.



It all depends from which side of the fence you are deciding from. Both uncontrolled bowl movements and ostomys are a nusiance to say the least.



Rick.....

Wow, I feel a bit passionate about this topic... and I can glean important truths from both junopete and beyondpar. That is, without a clear idea of what brought you to this medical dilemma, any response might be shooting from the hip.



For example, in my case, I had no digestive issues... none, nada, zilch! I was in great shape and led a holistic, organic lifestyle (admittedly, I traveled quite a bit with my job and worked too many hours, but I had a great life pre-diagnosis.) My life turned upside down during a routine OB/GYN annual exam! The point here is that I never suffered from digestive disorders, so the mere thought of an ostomy, as a single, relatively young female, choked the life out of me.



My second resounding thought is that please, please, please find a competent colorectal surgeon. Trust me, they are not all created equal! My first surgeon was an arrogant and vulgar butcher, to say the very least... He misdiagnosed my cancer and told me (leaning back in his leather chair with his hands clasped behind his head) I had no chance of a 'temporary' ostomy. Permanent, final, end of story. I immediately got a second opinion at Johns Hopkins and my life has been full of hope and recovery (not to say that it's been easy

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). I've been through pre-op chemo and radiation to shrink the tumor, surgery to remove the tumor + 14 lymph nodes (all negative, thank God!), temporary ileostomy (remember the first surgeon told me I had no chance!) and now I'm facing 5 more months of post-op chemo before the reversal. But despite this bumpy road, I still have a great life, in part, because there are so many lessons to be learned from the journey.



So, the moral of this story is that if you were blessed with great plumbing as I was

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, then find an excellent colorectal surgeon (Johns Hopkins and Cleveland Clinic to name a few) and if they (confidently) recommend rebuilding your parts from your leg muscle, then I'd definitely give it some serious thought.



We'll be here for you in the meantime! My prayers are with you... think positively and trust your instincts.



Sharon

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

addendum:  pastorpatricia, also meant to say that 'no bowel control' for some surgeons might be, as Junopete suggested, an immediate(prevailing) route to an ostomy. However, remember that surgeons are humans too, and some surgeons dedicate their research to and orient their career focus around preserving the sphincter and controlling/curing fecal incontinence.  I specifically looked for those qualities as I screened resumes/bios of the surgeons I would consider for this very important operation.



Good luck!!!!!

I have had a couple of grafts to try and repair a recto-vaginal fistula, unfortunately neither has worked as I keep getting infections - despite having an ileostomy to direct waste away from that area. Never had a graft of muscle from my leg, although that has been suggested. The stoma isn't great, but I find it is better than the alternative which I was for about 6 months before the ileostomy was formed. Good luck with whatever you decide, Rachel

Hi

Be sure that you get a clear diagnosis of your condition before you decide on the right option!



I had my operation in 2003 I was put under at 07.45am and back up 5.45pm plus I have had 4

more stays in hospital because I caught MRSA. I was told My op was very dificult because the condition of my large bowl also it was the only option I had.



I am here to write this so you can see I made the right choice. I am a lot better with the pouch

and no problem bowls.



If you have a lot of problems like you say I would recommend have a pouch You learn to live

with it quite quickly and the releif from the pain is magic.

Thank you all for your replies. I have no bowel control as a result of child bearing. I am in Canada and have an excellent surgeon. He has offered me the choice of the two surgeries but he thinks that the colostomy would be best and easiest on me - I'm 66 years old and have had a lot of surgeries including one to try and fix this problem. It was a nasty experience and didn't work. I still work part time and it's becoming a major problem. I appreciate everyones kind words and advice.

Colostomies are easy to take care of oncwe you get the hang of it,a home health nurse after surgery will help you adjust

Sharon, Could you get in touch with me. I wanted to know what your experience was at Hopkins?  I am seeing a colorectal surgeon at Johns Hopkins. I currently have a colostomy and I have severe issues with motility and pain. Because I have had eight previous abdominal surgeries and have severe adhesions, they can not do another revision and are saying it would be best to get an ileostomy. My colostomy is permanent. I had back surgery in 08 and the surgeon screwed up and I now have cauda equine syndrome which caused me to loose bladder and bowel control. Thanks,  Sharon, Eldersburg, MD