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Functioning but no satisfaction / The Elephant in the Room .

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Sat Sep 26, 2015 7:09 pm

Upon reading my pot again I realize that it may appear a bit whimsical but I am asking a very serious question here. I am facing some serious surgery in the near future. If someone can enlighten me as to the results of this surgery....from first hand experience I would be eternally thankful.  

This is Real Life , unfortunately !!

Thank you again my friends.

 

 

Hi my fellow Baggers,

                               I already wrote this post but was too chicken to submit it !! I will do a rewrite and see if I get the Cajones to actually post it. Bearing your soul, frustrations and weaknesses is never an easy task...for anyone. I don't feel anonymous on the site because I've known people on here{ not in person } for a while and I guess I'm reluctant to reveal all my little secrets LOL .

     I'm quite happy at the moment with my life . I get to travel and spend lots of time with my big family. I'm the only single one so I have nothing to tie me down and lots of brothers and sisters to visit in the US I'm currently in DC and heading out to San Francisco tomorrow for about two weeks for a family get together.

     My problem .....

     I have no other medical problems except for my Ostomy, due to Ulcerative Colitis. I am healthy and love the outdoors, swimming in the Ocean or a pool . biking ( when my Butt is up to it !! ) and soon ....Kayaking..hopefully ?? Sexually everything works as well as when I was 20...getting an erection is no problem and finishing the job is no problem. I think I could make some lady very happy if the opportunity arose. I have met one or two like minded ladies but a meeting has yet to be accomplished. I hope I don't seem like a lecher saying this but I think it's a legitimate concern . our desire for intimacy and the touch of another human being is a natural human need. I see from the site that many people are very lonely because they find that non-ostomates just don't really get it. They think they do and offer a sympathetic ear and I really appreciate that. Intimacy and concerns in that department will of course never come up in conversation with family...even less with acquaintenances. We have to keep those emotions locked up inside..We Need Affection Too !!! and sex is one of the most satisfying acts of affection, there should be no shame in talking about it . Most of us have been celibate for so long that STD's are not even a consideration !! If our bodies are up to the task we should have no shame in being open about it.

    I have become way more social in the past few years, more outgoing and open to women i meet. However I still can't bring myself to risk the potential  rejection and humiliation of the dating scene with non-ostomates....I know I'm being a wimp but hey we all have our faults. When I had a working J-Pouch I had a very pretty girlfriend for about a year. We would be in a club or pub listening to a band etc etc..and I would suddenly jump up and run to the bathroom ( the J-Pouch is not perfect even when it works !!!)...I wound up with the nickname " The Tidy Bowl Man ". I didn't get into the mechanics of it so the first time I spent more than 15 minutes in the bathroom she thought I was shooting up drugs or some such thing. This is when I explained the situation to her...the nickname stayed !!! She could not have handled an Ostomy. I know this.

    I am now quite happy with the Ostomy . I was at the beach for a few weeks recently on the Virginia coast, Chincoteague Island...Sooo beautiful and a photographer's dream there with warm ocean waves to play in. I took my shirt off to get a tan and just wore low hanging swimming shorts. I taped over the top of the bag to prevent peeling in the crashing waves and didn't care what anyone thought of my plastic friend. As it turned out nobody even appeared to notice it. I lay on the beach among the "Beautiful People " and didn't even care. I got no funny looks or questions so I'm good with my baggie at this point. However I still will not venture into the dating sphere !!

    Getting intimate with a woman who does not have an Ostomy would be quite a challenge for me. I guess I haven't bumped into the right one on any of my trips or back in Ireland...not yet anyway.

     The Problem :   I will probably need to have surgery in the coming year or sooner to remove my defective J-Pouch and whatever is left of the rectal stump...probably just the defective Sphincter. They are both causing me major problems at the moment, much inflammation and pain for the past week or two. I've been taking Flagyl and it seems to have stopped the Fungal infection causing my problems. This is temporary only and I will need the surgery when I get home. I would love some input from anyone, especially males who have had this surgery. I hear that it can damage the nerves , muscles etc that allow the penis to function sexually. Maybe I should keep this to myself but here goes ( possibly TMI haha ) . As I said above I have fully functioning parts down there , everything does what it was made for. Frustration mounts at times and the only way to relieve it is by a little. ..."Self Service " . I can get an erection just fine and complete the deed as nature intended it.....this satisfies my momentary need for relief and that's fine.....except for the absence of a woman !!!

     OK now I've opened myself to all kinds of jokes etc but hey guys and ladies...we've all done it and we all still do it if we physically can. The sense of relief from my frustration is better than any drug I could take !!! The tension that builds in my rectal area and my lower belly goes away almost immediately. It's the best therapy...what can I tell ya !!! Just do it, if you still can, so sorry if you cannot.

     Will I still be able to administer my "Self Therapy " after I have the Op ??? I hope so. Will I find the warm woman to share it with ...who knows ?? All I know is that I will keep on enjoying life and travel, swimming in the Ocean and my wonderful family. I'm sure I will survive without finding that warm empathetic lady to share all my experiences with ...and I mean All ...LOL !! I will be disappointed if I don't but hey that's life !!! ...Live it.....

      Did I embarass myself enough ladies ?? I would like your opinion on my relaxation methods....if you are adventurous enough to answer ???

Thank you for getting this far ....if anyone does ??

Magoo

 

    



Last edited by magoo on Thu Oct 22, 2015 11:47 am; edited 2 times in total
Sun Sep 27, 2015 12:42 am

Well Magoo, the painful truth is, it is very likely that you will be rendered impotent from more surgery.

 

Good luck getting a straight answer from the surgeon. Watch his eyes very closely.

 

VJ.

Sun Sep 27, 2015 2:34 pm

You did a fine job of explaining and I am so proud of you == your concerns are so real and I cannot go there with advice but from a woman's standpoint whether "it " works or doesn't should not be the basis of love and a relationship... A real woman is going to love you for who you are not what is "out of order" - I have had a massive surgery and I still enjoy very dear relations and friends -- basically nothing is different except people care enough to be there even when I don't realize I need them!!  

I am enjoying the gift of life and living within the issues that I have and have more quality of life because everything is even more precious that pre surgery- mine was FAP and a cancereous piee in the pancreas - that is gone and I am fine -- scary but gave it over to the Lord and refuse to take it back!!

I cannot safely SCUBA in cold water now and I cannot run but the rest is up to me as to whatever I put my mind to  -- I also discovered that the freedom of single is not bad either -- much better than a disasterous, dangerous  marriage and I can manage my own ...farm, family, projects, etc....

Have the surgery - realize it is another chapter in life and enjoy the changes and benefits that come with LIFE .....kill the pain and other issues, not your personality!!

 

A huge bear hug for sharing!!

 

 

 

Mon Sep 28, 2015 8:50 am

i found the publication from the Canadian Cancer Socitey ' Sexuality and Cancer" helpful. http://www.cancer.ca/en/support-and-services/resources/publications/?region=ab scdrol down to the S's.

Mon Sep 28, 2015 12:39 pm

Hi Magoo. Good post. Here's my experience. In 2010 I had to have my J-Pouch removed because of precancerous cells found in the area. My doctors installed a smaller K-Pouch which I eventually decided not to operationalize because my sphincter did not feel strong enough to control leakage.  (At that time the only leakage was normal mucus; but I was convinced if I could not retain that, I would have a bigger problem if reversed.) Anyway, after this surgery, all inflammation and pain associated with my ulcerative colitis went away forever.

To your question, this surgery had absolutely no negative effect on the full and proper functioning of my penis in any respect. As a matter of fact, with the elimination of rectal inflammation and pain, things only improved.

I have no idea how the removal of the rectal stump or sphincter could lead to erectile disfunction. Your surgeon and your primary care doctor can best advise you, but it certainly does not hurt to find out what others experienced. So far in this thread you have not heard expressly from anyone whose surgery had the results you fear. I can only advise you to be sure you choose the best colorectal surgeon available. In all of my 3 colon surgeries, a urologist was part of the surgical team and he insured that I would not be trading one problem for another. (This apparently is standard procedure because the ureteric injury is a possible complication of colorectal surgery.) You should consult with the urologist who will be on your surgery team. I suspect you will find that your worries are understandable but unnecessary. I feel very fortunate because I have come to trust all my doctors implicitely. I hope you can too. Good luck!

   PB

 

Mon Sep 28, 2015 1:22 pm

Hey you!  We've all done what ?  I have no idea what you could possibly be talking about. "Little smile on my face, looking up at the ceiling, mind wanders. Heehee"innocent

 

Only you would know if you are embarrassed by this, though I see no reason for you to be.  Since I am not a man, I can not answer as well as Primeboy has. However I have had my behind removed (well the insides anyway, the outside is still as glorious as it's ever been) and I can say I still get excited, horny,.... ( I will stop there so I don't get banned for some reason, but think you get the picture). With your mindset I doubt very much you will have any problems. One gentleman I did speak with a few years back told me he had erection problems, but that it had something to do with the urethra (?) so I am really replying (besides the fact I wanted to tease you a tiny bit ) to say Primeboy's information about talking with your urologist sounds really good. 

It took about 8 months before my butt felt anywhere close to normal again. But I think once all that goes away from the surgery you will be happy you did this. 

Good luck and HUGS !

 

Tue Sep 29, 2015 5:18 am

I recently had the same surgery for similar reasons,  total removal of my j pouch and anal and rectal tissues.   I call it the barbie butt surgery. Although I am female and without a partner,  the nerves seem fine as my "self service" orgasms are just as good as before the surgery!  Good luck! 

Tue Sep 29, 2015 9:12 am

Hi Magoo.  I'm in the San Francisco Bay Area.  I have had an illiostomy for 16 years...active, happy and single...age 66.  I feel the same way about  initiating a relationship with a non-ostomate.  Send me an ema if you care to meet and talk while you are in my home town

cheers,

Maureen

****

Tue Sep 29, 2015 12:23 pm

what is the infection from? do they know?

are your white cell counts OK??

just askin

=scarecrow

Tue Sep 29, 2015 5:21 pm
veejay wrote:

 

 

Good luck getting a straight answer from the surgeon. Watch his eyes very closely.

 

VJ.

your surgeon should warn you of the risks involved. mine did. thats a very confined area and the prostrate and related plumbing are all very close to the spot he will be working on. i had some damage , dont know if it was from the surgery or the radiation. however mine did improve some with time. might want to get a few opinions. best of luck to you.

Wed Sep 30, 2015 11:54 am

dead right,Veejay,ya hit the nail on the head,they,ll tell ya one thing(to avoid any extra pre surgery anxiety,on your part) and then chopitychop !!!

its been five years now and nada......still....I,m alive,i guess............

Wed Sep 30, 2015 12:11 pm

 

 

 

All is perfect again so I will NOT be having this nasty surgery any time soon. My problem only arises once a year for a fee weeks....I will put up with the inconvenience until they have to wheel me in !!!  I enjoy life as I am the Flagyl works for me.  Since my Cape Cod friend died I like surgery even less ....if that is possible. !!! 

    I will put this off as long as the problem occurs only two weeks out of the year.

All the best...Eamon

Fri Oct 02, 2015 12:22 am

Thank you Maureen. Life was a challenge for a long time. In recent years I feel like a new man. Apart from my fairly rare bouts of butt cramps, which I now understand, I am feeling better than I have in years.

still didn't get your email add. Would be nice to chat ? If you wish ?

magoomoran@. gmail

Eamon.

Thu Oct 08, 2015 5:32 pm

I never heard of a fungle infection in a disconnected j pouch. R u sure u don't mean diversion pouchitis/ colitis? That's what I have. What r your symptoms

Wed Oct 14, 2015 9:02 am

I thought I should reply to this in the Forum also Susan.

. whatever they wish to call it the fact is that it comes from a common Fungal infection from the Pouch to the Anus. The short piece of intestine just inside the Anus becomes inflamed and excoriated, raw and even bloody. This causes much pain and discomfort , especially while sitting. There is some discharge, clear or reddish mucus, generally.

Particles of food end up in the Pouch and that causes the Pouchitis, the Flagyl attacks the Fungal infection both in the Pouch itself and in the area just inside the Anus. These are my conclusions , my doctors agree. Try Flagyl for ten days to two weeks and the Pouchitis will dissipate and you will get great relief.

if anyone else has tried Flagyl could you please let us know how it worked for you.

thank you, Eamon

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