sex after reversal? (gotta ask) and a few other questions about reversal

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Notuffda
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 2/13/2010 9:36 AM (GMT -6)   
Hi all,
I'm new to this site and have some questions (feeling bold after reading so many posts this morning).

I was diagnosed with Crohns Jan 2004. I have been through almost everything I've read posted on here this morning from being extremely ill to having the surgeries, and all the side-effects. The emotional rollercoaster, the inability to work, and being controlled by my disease.

In July 2007, I had a total colectomy and in Dec 2007 I had the reversal. However, I didnt have the take-down as my local doctor said that there were some spots of inflammation in the part of the ileum and that no doctor would do the take down surgery. I live in a smaller community and have an excellent doctor, but hospital personnel (and others) are very uneducated. My surgeon is in Minneapolis at a colorectal surgery center and its like being in a different world when I travel there. I emailed the surgeon recently and explained my case and asked if he would consider doing the take-down. After more tests, he's agreed to do it!

So - my questions to you all:
I finally have my life back after getting my ileostomy (although with a fast-flowing intesting, I still have some food issues) - but managable.

Is this a mistake? I don't want to be wearing a diaper again.

My reasons for having the take-down really is mostly cosmetic, but I want to go swimming with my little kids again and wear something besides ostomy underwear again.

My life is still very much dictated by my ostomy/eating habits/fasting as many of you experience yourselves and I am hoping for a little more freedom getting rid of my bag - although this may not be the case.

Also, the big question - what about sex after the take-down? If your worried about having diarrhea all the time, can you ever have a normal love life? When I was ill, the relationship with my husband greatly changed (in many more ways than just sex). And, since I became "healthy" our relationship has greatly changed again. So, I am wondering what I can expect if anyone else is bold enough to share their experiences.

I also was only taking 2 weeks off from work. I am an outreach coordinator and spend several days a week out presenting to students in high schools, but was planning the surgery for early May. I will be wrapping up school visits by then and have mainly desk work for the summer. For those of you that have gone through this, should I be reconsidering this time frame? My surgeon says the surgery itself is pretty simple - a couple of small incisions and just dropping the stoma back down, but that I can be expecting some diarrhea. Everything that comes out now is water or undigested (which is another reason that I have not pursued the take down - scared to death!)

I know this is a long post, but I appreciate any feedback. I wish I would have found this site 6 years ago when I was going through all the turmoil alone. My family still believes that if I would have just not eaten that spicy food or that McDonalds greasy burger, this wouldnt have ever happened - ahh, I give up!

Keep smiling and thanks a lot for the feedback!

Notuffda

daisystar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/13/2010 11:23 AM (GMT -6)   
Please remember that everyone is different and some people bounce right back and they are out living life.
 
It has been 5 1/2 weeks since my ileostomy reversal and it is something I wish I had never done.
 
I'm suppose to go back to work next week and there is no way I can do this unless they would consider moving my desk, computer and phone into the bathroom. LOL
 
All they told me before the take down was I would have more bm's. OK I can live with that. However they didn't mention about running to the bathroom every 5 - 10
minutes for 3 - 5 hours daily.
 
I wish I had asked more questions and did more research. They said some people want the stoma back but they would like them to wait at least 6 months. I just want my life back
and if it is with an ileostomy that is fine.
 
I do know a lady who has had her ileostomy for 35 years and she swims, plays voleyball and is very active. She uses the Hollister bags and they are very good. That is what I
used during my 6 months with the ilesotomy. I had felt great - went anywhere, flew to Florida. My husband and I now have an empty nest and we could go out and I could eat
foods I had not been able to eat for years.
 
I guess my main reason for getting the reversal was to be normal again. I was more normal with the bag than I am now chained to the bathroom. I can get out in the mornings before
I eat if I need groceries. I don't know what I am going to do. I have to work and have my insurance.

Sue030509
Regular Member


Date Joined Jun 2009
Total Posts : 39
   Posted 2/13/2010 11:25 AM (GMT -6)   
Hi Notuffda

I have similar questions. I am thinking about doing the two stage surgery in May. I have had an ileostomy for one year, today actually. So I think I am ready to go through surgery again. Though I have to admit I am a little nervous about being ill again. I have started running again after alot of time of not doing anything. I dont love having a pouch, but I do love feeling well. I miss swimming without thinking about it...I am also loving my job and hate to take time away from it again. But...if I dont do the surgery will I regret. Do people really do this and never look back. I realize it will never be like living with a colon, but is it better than living with an ileostomy. The ambivilance of it all.

Sue
Ulcerated Colitis, 2003 colectomy 2009.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/13/2010 4:20 PM (GMT -6)   
Notuffda~I am a little confused...you have a Crohn's dx and had a total colectomy, right? Where was your Crohn's? Did you have a j-pouch created?

There are many different ways to answer your questions, but they totally depend on what was done. J-pouches aren't usually recommended for Crohn's patients since they do have a higher failure rate and I haven't met anyone with Crohn's who has had their small intestine connected to their rectum (or what is left of it). Most people who have that done have higher amounts of D.

I can answer some of the ileostomy concerns though...I swim when ever I want to! A pool or beach make no difference and there is nothing to plan for:) I just put my suit on and jump in!! I eat/drink what and when I want...my ostomy does not dictate any of that for me. And I do not fast because all that would do for my ileo is cause A LOT of gas:( The only time I have is when I've had to have a medical procedure. As far as a love life...my ileo doesn't change any of that, either:)

Do you use Metamucil or Imodium? They can do wonders for controlling your output:)

With the inflammation your doc noted are you on any Crohn's meds right now?

And...welcome to the forum:) I am glad you found it!!!

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/13/2010 9:05 PM (GMT -6)   
To be honest I think this is more a female issue than a male one. No offense to the men but the two areas that are in question, vagina and bowels are side by side for women. When I'm experiencing bm's, on after another, sex is the last thing on my mind. When it's all out D, no way would I even consider sex. God no! And truthfully there have been times that during sex I am so freaked out I'm going to have an accident (which I haven't, in 10 years I have not had even one accident!) that my mind strays to what dictates my life now too - my bowel issues. I've been living this way for 10 years! Running to the bathroom, eating a certain way, or not eating sometimes (yes mini-fasts do really work and as long as I go into them fully hydrated and haven eaten well prior to the fast I do okay). But back to your subject, it's just nice to know others have trouble too, timing sex, enjoying it without worrying about bm's suddenly wanting to erupt. I have asked my husband a few times to hurry up because well if we don't, there's going to be a mess on our hands. But again, this has never happened. Perhaps it's just my worries.......it is all tricky to pull off.

I wish that for we women the two areas were not so close in proximity. That therein lies part of the problem.

My surgeon has recommended that I have an inverted colostomy but this isn't the time to have elective surgery. Our insurance wouldn't cover it, they barely cover anything over a co-pay (which is high to start with). We have one more daughter to get thru college so our budget is tight. But in theory my surgeon swears an inverted colostomy that you'd irrigate once a day would be so much better than the life I am living. For now I am just dealing with my body the way it is - w/o a sigmoid, so stool just keeps coming, as long as I continue to eat, going thru its various odd stool stages - and do what has worked well for me (small meals, a low residue diet, keeping my stress level as low as possible). Since our budget is so tight I am glad at times I can use any bathroom and not need irrigation equipment or ostomy supplies (which would be expensive and not covered by our insurance).

And truthfully some days I pretend this is all normal. Not to avoid the obvious but to trick my mind into thinking, sure everyone poops this much. LOL! It's what gets me thru bad days, of which I had one just today.

As far as people with normal colons understanding what we go thru, I gave up that dream as well. I used to try and educate friends and family, explaining why I have so much trouble. 9 out of 10 times, they'd say - can't you just take a pill for that? Can't you just stay in the bathroom and finish up (as if my multiple bm's could be all bunched up into one dump as years ago, sure that would work if I just stayed in the bathroom for hours!). I finally realized they have nothing to compare what we all struggle with. They can eat whatever they want, hold their stool and go once or twice a day. Oh how I wish that were my situation or yours, and all of us! But when you think back to when you didn't have such trouble, would you have understood what all this is like to deal with? I shudder to think if I would have been understanding. I probably wouldn't have. So I try to cut others lots of slack. They just can't relate to what we deal with. On top of trying to get others to understand, 9 out of 10 times they want to explain all of this away by saying - oh your stomach is bothering you again? I just sigh and say - yes my stomach.

It's not my stomach! But it's a polite way of saying - that's code for IBS.

Hang in there "notuffda", you are definitely not alone in your struggles. I wish my husband and I could be more sexually active too, we're empty nesters too but over 50% of the time, that region on my body is well, not clean! Yikes!

Sorry to have been so blunt. But it's a subject I've wanted to see discussed here.

Mary/Marsky
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening


daisystar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/15/2010 9:08 AM (GMT -6)   
I just hate this - you know when you have to plan for sex it takes a lot out of it. But better than nothing. LOL
 
The best time for us is in the mornings because after I eat you never know what will happen.
 
Marsky - I have given up on trying to educate my friends and family on this situation. Who could understand this - anymore I just say I'm fine.
 
Its still upsetting to me that the doctor wasn't more clear on what I would be going through after the reversal besides expect more bm's.
 
Good luck everyone. I am thankfull I have found this website and have so much information. I wish I had found it before my last surgery.
 
Bless you,
 
daisystar

Notuffda
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 2/20/2010 1:57 PM (GMT -6)   
Hi all,
I am so grateful to have found this site - and other people who know exactly what I'm talking about!

I had the reversal surgery 2 years ago, but have been hesitant about doing the take-down. My doctor was very blunt with me that I could have like 12 bm's a day and that most people have about 6 accidents during the day and at least 1 at night. I asked him then why would anyone ever have that done? He also told me that there is about a 95% satisfaction rate after the take-down. So, I'm totally confused - do I have it or not? I feel like this is my one opportunity to get rid of the bag, even if it doesnt last forever.

I do, however, remember what it was like before my surgery. I was in the bathroom probably 25 times a day, pouring out blood, anemic, running fevers, and very ill. I had a new baby who I didnt really interact with until she was several month old (after my surgery).

I dont want to have this surgery and not be a part of my childrens lives again because I spend so much time in the bathroom. On the other hand, I want to have a little more 'normal' (if you can call it that) life than living with the bag.

I worry about everything from sex, to swimming, to working - with and without the bag. I do mini-fast often. As soon as I eat, I have to empty the bag. Until this fall, I had an hour commute to work and no bathroom on the way. I prefer to wear clothing that doesnt look like a sack, so I empty the bag often so it doesnt stick out. I don't eat before my daughters choir concert, going to a movie, or pretty much any other event as I know I can't sit through an hour of not having to get up and empty the stupid bag if I eat.

I fully admit to having a love/hate relationship with it as it did save my life (total colectomy), but I wish I didnt have to deal with it constantly.

I'm tired of cleaning up poop!

Notuffda

By the way, I was under the impression I have a J-pouch. Then I saw a recent x-ray I had done, and it just looked like a fat intestine. Is that what it should look like?

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/21/2010 10:13 PM (GMT -6)   
lol. fat intestine. that makes me laugh.

someday i want to have a j-pouch too. i also have a love/hate relationship with my ostomy. But i feel mine is more love than hate.
I do have to think a bit more b4 a shower (which i don't like), but not really anything else (except for my recent exercise injury). But i swim, have sex, go biking, and do all sorts of things without thinking. When i go swimming, i eat about an hour b4 so i can empty and maybe empty while i'm swimming, but that's not so bad. I'm sure you're self conscience about people seeing your appliance, but they don't.
I don't wear ostomy underwear. I wear reg. stuff. I don't know why you have to wear it.
But i feel so good compared to what i felt b4 surgery, that i'm really afraid to give it up. But, I really think i will try-after i have more children. I'm also afraid that i might get used to things this way and really hate the recovery of a j-pouch. And i had lots of food issues with u/c, i'm afraid i will have more with a pouch. But, i am SITLL going to give it a try.

If i'm miserable, i'll have a permanent ileostomy. i'll know i can be ok with it.

Your stories do scare me though. 'The best laid plans...........'

Notuffda-have you checked out www.jpouch.org for some of your concerns.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


willie4
New Member


Date Joined Jan 2010
Total Posts : 1
   Posted 2/23/2010 10:30 AM (GMT -6)   
hiya smilewinkgrin  new to site had radical hysterectomy plus ileostomy surgery dec 2009 stilll trying to deal with it .........
partner having big problems overcomming this any tips or hints .......
 

daisystar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/24/2010 3:16 PM (GMT -6)   
My husband had a little trouble with the bag also. Someone had posted to put a tube top on to cover the bag when you want it covered and I think this is an excellant suggestion. I wish I would have thought of that. I had got a wrapper thing off ebay that covered the bag and fastened with velcro but it was not very attractive and I really didn't care for it.
 
Its been 7 weeks today since my reversal and I am doing better. I've found sticking to the low residue diet really helps and cutting down on food intake period. I have lost some weight but I needed to do that anyway and I walk as much as I can. Hopefully in the next couple of months I will have a treadmill.
 
Its been really cold in Iowa but I still get out and try to walk at least a mile everyday.
 
So my diet right now is hot tea, Metamucil and vitamins for breakfast, a protein drink for lunch, a banana, applesauce or peaches during the afternoon and for dinner I have potatoes or pasta. Sometimes a few bites of fish or chicken and crackers and Metamucil wafers in between when I need something to cruch on.  Sometimes I will have a few bites of whatever I fix my husband for dinner.
 
I've had a terrible craving for pizza so I will try a slice tonight and see how that goes. I suppose adding different food once in a while will help the colon adjust to normal???
 
I have to go back to work on Monday or I will loose my insurance so I'm hoping I don't have to much trouble. I've been having a couple of days with hardly no bm's and then on the 3rd or 4th day I'll have 20 or more. So hopefully that will balance out. I'm still not real happy with the reversal. The 6 months I had the ileostomy was the only time in a long time that I could eat anything I wanted, go anywhere I wanted and really felt good. I did not have any big problems with the bag at all.
 
I've come a long ways in the 7 weeks - I'll have to see what the next 7 brings.
 

damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 2/26/2010 6:11 PM (GMT -6)   
Hello Nottuffda i just wanted to sy hello and let you know that your not alone and i truly your emotional pain!!!! Please know that we are here for you and if you have any other questions please dont hesitate to ask because if you dontyou willnever know!!!!!! Keep ur chin up and things will start to go well for you. Your in my thought's and i know how very hard it is.
 
sincerley,
 
Beverley........
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    vette guy
    Veteran Member


    Date Joined Nov 2006
    Total Posts : 650
       Posted 2/28/2010 12:14 PM (GMT -6)   
    The first time I had sex after my ostomy I was scared, REALLY SCARED.............I was all alone! (rim shot)
     

    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 2/28/2010 6:02 PM (GMT -6)   
    Ive only had intercourse once in 10 years thats how scared i am!!!! I just cant go there and see that awful bag which just gets in ur way.....
     
    Beverley......  very lonely lady!!!!!!!!!!!!!!!
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    honestwoman50
    Veteran Member


    Date Joined May 2009
    Total Posts : 833
       Posted 3/6/2010 11:51 AM (GMT -6)   
    Notuffda  Hello, I have a question because I have never herd of this term before....take down surgery?  What is that?  Is it a stoma reversal?  Wishing you the best of luck...Leslie
    Leslie King

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