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

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

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.

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

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?

hiya   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 .......

 

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........

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!!!!!!!!!!!!!!!