Hello, and welcome to the board. I think I am the token person on this board with experience on the subject, so here we go!
I had ostomy at 15 due to a deadly batch of colitis, then J-pouch reversal (failed) and now a permanent ostomy.
First off, your will most likely become pregnant. The reduction is not in the fertility itself, but in the path of your fallopian tubes. You may have a problem and you may not. 20 years ago, they didn't have much idea about fertility problems with reversal surgeries. Now they do this stuff laparoscopically and take much better care of the reproductive organs. As our group of women hit the baby making years, it seems that scarring around the ovaries and tubes are causing a good deal of trouble in SOME of us. That being said, lots of women have had no problem getting preggo the old fashioned way.
If you havent gotten pregnant after 6 months of trying with this kind of surgical history, you should get and hysterosalpingogram (HSG) where they pass dye through your tubes to see if they are blocked or not, and is the path is normal. (Adhesions can distort the path of the tubes and make them inflexible-thiscan be a problem with those of us who have had these surgeries. Someimes, even when the path is clear, scarring makes it that the eggs cannot drop into the tubes. This is why if you do not get pregnant the old fashioned way, you should skip IUI and go to IVF. (I'm no doctor, but this is the information that I have gathered)
The good news is that IVF bypasses all of this, giving you a primo shot at being a mother, ever if you have a lot of scarring. You skip the problem area, and you are off the the races.
The above is the worst case scenerio. I have it, and that is why I am here on this board. You are likely A-OK, but to save yourself any more angst, ask for the HSG and you will know where you stand.
ALSO- there is a discussion board with women in our situation called" j-pouch dot org." There is a special board for women and pregnancy after bowel reconstruction and there are lots of women who have gotten pregnant with and without help. I found them encouraging, empathetic, and helpful. After not thinking about my ostomy for 15 years, I now have to consider it as a medical liability again, and that can be hard. It was a LONG time ago, right?
Feel free to stick around. If you have any more questions, I am here to help.
TTC#1 since October 2010
"The jump is so frightening between where I am and where I want to be...because of all I may become I will close my eyes and leap." Mary Anne Radmacher
5 major abdominal surgeries for Ulcerative colitis, failed j pouch, perm. Ileostomy
DX-DOR & Tubal abnormalities/Extensive Adhesions from earlier surgeries.latest fsh -26 :(
IVF 1- March 2012 Antagonist Protocol; BCP until March 3; AFC this cycle is 10 (Hooray); Start stims on March 9; ER on March 19- 2R; 2T (1 perfect 8 cell, 1 scrappy 3 cell); tubal infection from ER-hospitalized. Doomed! BFN
Essure Procedure to treat bilateral hydrosalpinx; June 2012, wait 3 months for confirmation test.
IVF2 (Egg Banking)-letrozole/antagonist cycle; June/July 2012 225iu merional + cetrotide; slow responder, Ovulated before ER. Unbelievable. Canceled remaining cycles with my eggs
DE IVF in Brno, Czech. Approx. ET on Oct 6 CANCELLED-Essure didn't close both tubes-test again in 3 months
IVF3-DE IVF ET on Dec 9, 2012 (decided to roll the dice no matter what!)
2 perfect HB transferred; 8dp5dt beta:36; 10dp5dt beta 15; chemical pregnancy.
Turning our hearts toward adoption
Married since July 11, 2009
Fur baby Cairn Terrier
Hi, totally lurking here and caught this post.
Glue - I just wanted to say that (even though this isn't really IF or PG related) my DH had severe UC starting at age 16. Due to many years of prednisone he was advised that it would cause negative long term effects, blah blah and all the other reasons Colitis sucks, blood transfusions, weeks, months, years of pain, I'm sure you already know.
Anyway, at the age of 20 (he is 30 now) he went in for the 2 part surgery, ostomy then j-pouch construction.
Well, it pretty much sucks.
I'm curious when you said that yours "failed" that yours did too? I would be curious to know your situation and why you got the reversal? I know with DH he has SO many problems and it kills me to see him in all the pain, discomfort, spasms, embarrassment. I try to be as supportive as possible, and it has effected both of our lives in pretty negative ways.
From day 1 he had considered going to get a perm ostomy but has hesitated for many reasons. FIL had UC also and instead of doing the j-pouch, because of how many issues DH had, he opted to move straight to the ostomy. Well in the process he had a lot of nerve damage and is no longer able to get an erection (FIL obviously doesn't know that I am aware of this) either way. I think because DH got out of the last two surgeries without nerve damage he is SUPER concerned that he might not be so lucky if he goes into have the reversal done.
On an IF note, we are also concerned what this might mean for, our already shiity, fertility situation. FIL can ejaculate but cannot get hard, if you know what I mean. Technically we are looking at moving to IVF anyway so that might not be a huge issue.
But can you imagine being a 30 year old male and not being able to have sex?! Ahhh! I shudder to think....
So, not sure where I'm going with this. Maybe just happy to find someone on the other side that isn't DH and maybe hearing another perspective, or how to give better support or whatever.
Thanks for listening :) (if you made it that far...)
OP - I'm sorry for your situation, I'm sure it must be incredibly frustrating and scary to have to deal with potential issues caused by a, probably already shiity situation that was out of your control. I have lurked on the Forum that Glue suggested and it seems like a really good way to get some good answers and find support. Best of luck to you.
Dear Williamina- Thanks for your note and I am sorry for your husband's and your situation.
Please excuse me for one second, ladies of the board if we are off topic.
Returning to my ostomy was the greatest decision I made for the quality of my life. I had no quality of life with the reversal. None at all. An ostomy does take a little getting used to, but honestly, I dont even think about it any more. The best I can compare it to is the inconvenience of getting a period when you first start menstruating as a teen. Its weird, kinda yuck, accidents happen, and then you find your way, and its completely normal. There is always risk with any such surgery. Erectile disfunction is a risk, but its the exception, not the rule. I was told all sorts of horror tales about what will happen if I remove my jpouch, but none of those things happened. Tubal infertility was NOT one of the things I was told....and that's the one that got me.
Long story short, I live a normal, adventure-full, active lifestyle. I am strong, healthy, and I can eat what I want, when I want. Quality of life- 100%. Getting back my ostomy was my second chance at life. My recommendation is to get a consult with a surgeon, and go over your concerns. If the reversal is not working, its not going to get better. When he's had enough, he will know. I cannot say enough about going to a support group to meet real people who have walked this path. Good luck. Feel free to write me at amfsoprano at aol dot com if you have any questions. Best wishes to you and yours.
**** ticker warning***
I hope you don't mind me responding here. I was board surfing and the word ostomy caught my eye. I also had UC, a failed j-pouch as a teen and have had a permanent ostomy for 10 years. I feel like there's so few of us out there that I get really excited whenever I run into others.
sylvia- glueck gave you a great response :) I don't really have anything to add except my personal experience - I had six major abdominal surgeries in the process and lost one fallopian tube, and was told over and over again that I'd probably need IVF. I was very blessed and did not have a problem getting pregnant. Over the years I have met women who've had 15+ ostomy-related abdominal surgeries who ad no problem getting pregnant, and others who only had only 1 or 2 who had tubal infertility as a result. Although each surgery raises the chance that you'll have a problem, it's really a crapshoot and you won't know if you have a problem until you have an HSG. Good luck.
willamina - I'm so sorry your husband is dealing with this. Getting my ostomy back was also the best decision I've ever made for myself. I was so physically miserable with the j-pouch that the ostomy was an incredible relief - I could finally sleep more than 2 hours at a time, not have to wear Depends to bed, and live without food/the bathroom/pain controlling my every move. If your husband is that bad off, I hope he will at least go talk to a surgeon about the risks, because I am certain that the outcome he's afraid of is a very minimal risk. Also, the part of the procedure that carries the risk of nerve damage is the removal of the j-pouch, and that doesn't necessarily have to be done. I had my ostomy done several years before I went back and had the j-pouch removed. It just sat there dormant for that time. I eventually chose to have it removed because of the cancer risk and the fact that my muscles down there had deteriorated to such an extent that I was no longer able to hold in the bit of mucus it produced each day. But the risk of nerve damage like your FIL's is probably non-existent if the pouch were to be left in, because the surgeon would not need to work in that area at all. Perhaps that is an option he would consider. I hate to hear about those who suffer for years from the j-pouch :(
glueck - what screen name do you use on that board? I post as kate. I was lucky to find that board when I was going through everything, and other posters, especially Jill, were an incredible inspiration and source of hope for me. I'm sorry you've had to deal with tubal infertility on top of everything you when through when you were younger - UC is such a horrible, unfair disease. I am sending my thoughts and prayers your way for your upcoming cycle. Take care.
Dear Potomac-AKA Kate :)
Wow.... so nice to know I am not alone here- congratulations on your pregnancy. I pray I won't be far behind you. It gives me much hope for what could be on the other side of this IVF cycle. I haven't been on the jpouch board for a good while but my handle is Arabella. I will look for you over there... perhaps today!
I will look forward to hearing how your pregnancy progresses. I will find you on the other board for the gory deets. So nice to meet you here!