Risk of Infertility for Women After J-Pouch Surgery Almost Half
More on j-pouch surgery:
Pouches: Not Just For Kangaroos Anymore
Diet After J-Pouch Surgery
My Life as a J-poucher
This is particularly alarming for young women considering j-pouch surgery. IBD is a disease of young persons, and this means that many young women who underwent j-pouch surgery over the last 20 years may find themselves infertile. My UC was so advanced after 10 years of disease that I had to have j-pouch surgery 7 years ago. The risk of infertility was unknown even at that time and was never discussed with me. However, in my case, it would not have mattered--my colon was rapidly turning cancerous and I had no choice but surgery.
For young women, this high risk of infertility is a serious one that must be considered carefully before surgery. I hope that gastroenterologists and colo-rectal surgeons do not underestimate this risk, and will take the time to explain it to their female patients. This may result in some women willing to suffer with their UC because they are unwilling to risk their ability to conceive a child (risk of infertility after medical treatment for UC is about 15%). That may not be a popular choice with physicians, but for a surgery that is supposed to raise the quality of life, the high risk of infertility that goes with it may not be an acceptable one for some women.
Comments
Thanks for highlighting this problem and recommending that women talk to their surgeons. I had my pouch surgery 9 years ago and the issue of infertility was never raised. I am one of the lucky ones, as I got pregnant v quickly in spite of pouch surgery and in spite of being 40. Bug my advice to any woman is to get as much info as possible BEFORE surgery.
I had my surgey six years ago. I’m now 24 and have been trying to get pregnant for 3 years, we tried iui and ivf all kinds of meds but no luck yet. I just found out a week ago that my surgery was probably the cause of my fertilty issues. It was never dicussed with me. The whole time I was sick since age 13 i told my doctors not to give me meds that would harm my ability to have children, now I learn this. I would never have had the surgery if I would have known. I got a cyst on my left ovary due to scar tissue and they had to remove it. Now I’m 24 and afriad I’ll have to have a full hysterectomy before too long. We need more research on this subject. If anyone knows more about women who have had trouble what they did to bevome pregnant I would love to hear it.
I had my j-pouch surgery about 6 years ago. I am now 24. I have not tried to have children just yet, but infertility from the surgery is a big fear of mine for when I am ready to try to get pregnant.
My surgeon did, however, warn me about the risk. But at that time all he was able to tell me was that women with the surgery have a lower chance of conceiving due to scar tissue, but if they did conceive could carry to full term. He said they did not know any percentage or statistic on it yet.
I am a little sad to learn its such a high percentage – 48%!
And being on birth control right now because I am still in school and am not ready for children….this makes me even more nervous. Perhaps I should not take hormonal birth control due to the risks of infertility it has??
I am 27 years old and I had my surgery 6 months ago. I also, had a cyst on my ovarie and it was removed. I to was warned that there may be a small risk of infertility, but I was never told 48%. That’s scary, but I am going to pray that I am a lucky one. I dont think I would have under gone the surgery if I knew it would significantly hurt my chances of having a children.
It is possible to get pregnant. I had to have an emergency 3 step jpouch 13 years ago. I have since carried 5 babies to term & delivered them naturally.
Hang in there, ladies. It can happen.
As I understand it, things are not quite as bad as the 48% headline figure seems to indicate. That is not to say that there is not a significant risk but just it may not be quite as bad as first seems. 48% of those who have had pouch surgery fail to get pregnant within a year of trying, this figure is normally around 17% for the general population. After 3-5 years about 20% of those who have had pouch surgery will have failed to conceive compared with about 7% of the general population. Generally speaking you are about 3 times more likely to fail to conceive naturally than one who has not had surgery – you always need to look deeper into these statistics, they often get spun in ways that meet the agenda of those publishing them.
I am 7 yrs post J-Pouch surgery. I conceived very easily just after the reversal of my ileostomy. However, I have been trying to have another child for the past 4 years with no luck. I have one, healthy happy 5 yr old and feel blessed with what I have. I try to think of it this way: I would have no life if I still had my colon and am happy to be healthy and able to enjoy life to the fullest. I know wanting to have a baby and not be able to can be so devastating. Living with active UC can be just as devastating. There are other ways to have children (adoption, surrogacy). Don’t give up and think out of the box.
I had what was supposed to be a three step colectomy w/temporary ileostomy and takedown that spanned the year 1999. It turned into a four step once the doctors discovered internal abscesses. My wound dehisced about five days in to my first surgery. About five weeks post op I had a temp up to 103. It took three days of fever and abd pain to get the docs to admit me back in and take a look. I was taken in for emergency surgery. I found out later that my surgeries were largely done by students, not the actual surgeon I hired. My fillopian tubes slowly became hydrosalpinx until one ruptured. I had the second one removed after a failed round of IVF. The tube that was removed was the size of a nerf football. I am a nurse and I can tell you that doctors aren’t gentle, and I can imagine the trauma our fragile reproductive organs go through in a surgery like this, not withstanding students! I have since had two failed rounds of FET(frozen embryo transfer.) I do blame my physician for not teaching me anything and for letting kids play with my insides when my fertility was at stake. I do blame him for my infertility. He was said at the time to be the foremost authority on the west-coast on J-pouch procedures.