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Amber J. Tresca

Risk of Infertility for Women After J-Pouch Surgery Almost Half

By June 17, 2006

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A new study in the medical journal Gut indicates that infertility occurs in 48% of women who undergo j-pouch (ileal pouch-anal anastomosis) surgery to treat ulcerative colitis (UC). This is presumably due to the scarring in the fallopian tubes that may occur after such extensive surgery. The risk of infertility after j-pouch has been in question for several years because many studies showed widely varying rates of infertility.

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
March 4, 2007 at 9:32 am
(1) claire rowsell says:

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.

November 12, 2007 at 10:10 pm
(2) Halsey says:

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.

March 24, 2008 at 1:08 pm
(3) crystal says:

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??

April 17, 2008 at 4:07 pm
(4) Shakena says:

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.

May 21, 2008 at 12:29 am
(5) Amy says:

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.

August 15, 2009 at 4:22 pm
(6) jm says:

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.

September 29, 2009 at 4:26 pm
(7) SLN says:

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.

October 6, 2009 at 2:17 am
(8) Jody says:

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.

May 1, 2010 at 6:54 am
(9) Theresa says:

Hi all,
I got Ulcerative Colitis when I was 17. I had a few months of treatment and then my surgeon suggested surgery. This was in 1997. I was not informed at the time that there would be any problems with infertility post my surgery. My mother at the time specifically asked if I would have any problems having children. I was a little embarrassed at the time when my mum asked this question and I remember thinking its my bowel they will be operating on!

Well anyway I am now 32 and I have been trying to get pregnant for 2 years. I have been very career orientated and work as a senior nurse in ITU. After investigations it was found that I have fluid in my fallopian tubes. I was very upset to find out that my surgery when I was younger has now resulted in me becoming infertile. I feel cheated that I at least did not even know that this could have been a problem in my future. I also have hated the way I have been treated- my doctor said it could have been a sexually transmitted disease. Only for me being medically minded and doing some of my own research have i identified that it was surgery which has left me infertile. I had a total colectomy and pouch formation with an ileostomy. This ileostomy was reversed after 6months when my J pouch was ready.

I have been with my husband for 11 years and I feel that if I had known I could have at least warned him! He does not care and says he is happy with me if we do, are dont have kids. I have just had my first treatment of IVF and am waiting for my pregnancy result in 4 days time. I had two eggs put in! Maybe twins for me yet! There is a very low chance that I will be pregnant.

By the way I would not have changed having the surgery when I was 17. But it would have been nice to know that I may have had a problem in the future. I have had a very exciting and productive life, which I may not have had if I had continued to have flare ups of Ulcerative Colitis. I moved away from home at the age of 19 to persue my career in nursing in London.

September 28, 2010 at 3:07 pm
(10) Becki says:

I cant believe there are so many women out there in the same position as me. I had my jpouch 3 step surgery when I was 11 and now 12 years on and 2 years of trying to conceive I am told that my surgery has left me infertile. I can understand those of you who feel cheated, I would not have had the op had I have known it would compromise my chances of motherhood. As if we didnt already go through enough with the illness itself! Worst thing about it is, I was advised about surgery after just a year of living with uc and given the seriousness of infertility I would have expected doctors to explore other options at least until I was emotionally ready to personally consider the the surgery and its possible effects.

December 12, 2010 at 10:51 am
(11) Theresa says:

Hi All
Just to let ye know that I am 9months pregnant and am having the baby in two weeks time via C-section. The IVF treatment worked for me!

December 27, 2010 at 8:29 am
(12) Tana Miller says:

My story is similar to many of the ones I have heard here today however there is a 52% chance that you may get pregnant…I was one of the lucky ones. I had my jpouch surgery at the CCF in 1992. 14 yrs., one divorce and many laparoscopies for infertility due to endometriosis later I was pregnant. Back then the research and surgery was still fairly new. I attributed my infertility with my husband and partner of 12 yrs to my adhesions and endometriosis. I resolved myself at 32 that I would never conceive. I divorced my husband for many reasons one of which was my infertility or so i thought and lunged myself into my career. Four years later I became pregnant. Call it a miracle or call it luck. There is still that 52% chance! Don’t give up hope!
T

June 19, 2012 at 1:06 pm
(13) olivia says:

i was diagnoised with uc in 2010 at age of 16 and then underwent 3 stage j pouch 2010-2012 i was told about infertility on the day of the second surgery which hasnt really sunk in til now. i was also told i would need a c section if i did become pregnant. however it is promising to hear that there is some hope.

June 19, 2012 at 9:50 pm
(14) ibdcrohns says:

There is absolutely hope. I have a j-pouch, which was done in 1999 via a 2-step procedure. We did not know of the impact on fertility at the time. I have delivered two healthy children via spontaneous labor and vaginal birth. I was age 34 and 37 at the time of my children’s births. My surgeon and my OB/GYN both thought that a c-section was not necessary, and in fact, my OB/GYN really did NOT want a c-section for me. Please seek a second opinion, especially when it comes to your children. Some people will tell you that the manner of birth does not matter, but it absolutely does, and you deserve the chance to give birth vaginally if at all possible. Best of luck!

August 27, 2013 at 10:41 am
(15) Coz ivf says:

Hi all

In brief I am an an IVF/Jpouch vlogger on youtube

I was NEVER told at the age of 20 that having a jpouch could cause infertility! This makes me blood boil after all I’ve been through to try and conceive

5 IVF attempts- 3
One- abandoned due to poor response
Two- worked, miscarriage at 9weks – frozen embryo
Three- a chemical pregnancy/early MMC
Four- negative
Five- no more NHS attempts so paid £6k and no embryos made transfer

Beginning to loose hope! Trying to fight for my third and final NHS funded IVF attempt :(

September 8, 2013 at 8:48 pm
(16) ibdcrohns says:

I am so sorry to hear. I was never told either, but I was truly fortunate and only underwent IUI 4 times. I even conceived once without any assistance. Keep your hope! Your state of mind is so important when it comes to overcoming infertility.

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