Hi Toby,
Do you have an Obs/Gyn that you know and trust? I would honestly talk to them first especially if they know you, your body and your anatomy...some of us have no problem conceiving and others do, it all depends on how you heal, how much scarring there is and if you make a lot of adhesions ++++ tons of other factors...I had my pouch very young and do not regret it at all, it gave me a quality of life that I had never previously known but the infertility was hard to deal with.
I suffered greatly with it and because of it but I still do not regret my pouch.
It is so very individual and personal...but you have to be at peace with your body and your health situation...the only advice that I can give you is to get rid of your sick colon. That is a must...As for the rest, you would probably have to have a temp anyway so you could discuss the difference bettween pouch creation V.S. end ileo with your doc and see if the % changes...
Hope that this helps some
Sharon

In my mind, it is all about what risks you find acceptable. Nobody knows how many adhesions they will form until after they have had abdominal surgery. Of course, by then, it is too late. It is known that if you can delay the rectal dissection portion of this surgery, and have an end ileostomy until after your childbearing years, you do reduce your infertility risk. It does not eliminate it, because some people have fertility issues without having any surgery. So do not assume this is some sort of guarantee you will be able to get pregnant and carry to term.

This is an issue that really was not part of the decision making process a couple of decades ago, but now that the risks are known, it is worth exploring.

I am not sure how I would have proceded if I had my surgery before I had my kids... Especially since I never even had an ileostomy, even temporarily!

Jan

This has also been one of my major concerns although I already have 2 children pre-pouch. I think it's definitely a risk and a really difficult decision to make. Will your surgeon be doing your surgery/surgeries laparoscopically? This can lower the infertility risk although of course, as with any pelvic surgery, there is no guarantee. GOOD LUCK! I know this is such a tough decision to make...

This is the new protocol for women of childbearing age. If you want children soon - next 2-3 years say - then I think you should ge the ileo, have your kids and do the pouch later. In addition to the fertility risks, what if you develop complications with the pouch? That could further delay child bearing.

I had a j-pouch and got chronic pouchitis pretty much from day one. After 3 1/2 years fighting it and never off the drugs, I got an end ileo but pouch was still in. Still had problems. So had pouch out and made ileo permanent - I was 31 when the ileo was made permanent.

Then I tried to get pregnant and couldn't. Had to do IVF. Now have two beautiful children conceived and carried with an ileo. Please don't hesitate to contact me if you want to discuss life with an ileo, pregnancy with an ileo, or anything else.

I agree that if you have a partner and want children in the near future, then get the ileo and wait on the pouch.

If you're not ready in the next few years, it's a much harder decision.

If you do decide to do the j-pouch now, IMO I would find the most experienced you can. You can also ask about options that help prevent adhesions. I had my one good fallopian tube and ovary wrapped in Seprafilm during my last surgery- it's a surgical product that can help prevent adhesions and reduces the risk of infertility. Obviously I will never know if that's what made the difference for me, but despite 9 surgeries and having lost one tube, I was able to get pregnant naturally and easily.

I also think it's worth getting a second opinion on. It never hurts to get a different perspective from another doctor when making a huge decision like this. Good luck.

I second what Kate said. I voiced great concern about fertility to my surgeon so he did something with my tubes and ovaries to prevent scar tissue issues. I think he wrapped them as Kate said, but he also elevated my ovaries out of the way. I don't know if he is to thank, but we got pregnant on our first try after takedown.

My tubes were wrapped and extra care taken with my ovaries for my surgeries too. But I did have problems. Unfortunately, you just don't know if you will or wont have problems. You have to make a leap of faith either way - get the ileo and hope it prevents problems or move forward with j-pouch and hope it doesn't cause problems.

One thing to consider is that IVF and other fertility treatments are very expensive. If you can avoid the possibility of needing them, it will save not only your body from the additional medical intervention, but also your wallet. Now, no one I know who has a child from IVF regrets the money spent. But since you are fortunate enough to have time to plan and make a choice, I would consider the cost as well. I happen to live in a state where fertility treatments are covered 100% so it wasn't part of the equation for us, but I sure wish I had been given the option of doing the surgery in stages. Back when I was having surgery initially they were still saying no big deal, minimal risk of fertility issues, etc...

I don't check into the site that often since I've never felt better since my takedown in 2007.

But, I have been reserarching the pregnancy portion because I AM PREGNANT.

And, here's the best part: after worrying about infertility (my surgeon told me there was a chance), I got pregnant TWO WEEKS after I stopped taking my pill. I'm not even kidding.

I'm only 7 weeks right now, and a lot can happen between now and then, but I'm taking it as a good sign that it happened so quickly for me.

Thanks for the feedback everyone! I still haven't quite made a decision, but it's helpful to hear everyone's experiences. As a result, I now have an appointment this week with a different surgeon for a second opinion, and next week I have an appointment with a fertility specialist. Hopefully by the end of next week I'll have all the info I need to make a really informed decision.

I don't know if this post is too late but anyway hopefully helpful as provides a different viewpoint from many of the others.

This was also a major concern for me, and my gastro consultant (medical not surgical) was also concerned on my behalf and suggested the route that you're considering - having a bag whilst you have a baby. This was a very daunting prospect for me and I was very scared (the idea of sex with bag really turned me off, no offence intended to permanent stomas out there).

Anyway - when I spoke with the surgeon (and two friends who are docs) none of them could understand why there would be any increased risk of infertility. What they did say is that it might be hard to conceive naturally (i.e. would need to go down the IVF route) becuase if the tubes are stuck to things they shouldn't be (adhesions) then the egg wouldn't be able to travel where it needs to. BUT there would be no issue with taking the egg out, fertilising in a petri dish and popping it back in. i.e. there shouldn't be issues with uterus etc.

Now, in relation to the two step process - having the baby with a stoma. This is not always an easy option - lots of people have issues with a stoma when they're pregnant. Also, in my case my adhesions were really bad after the first op and I probably wouldn't have been able to conceive when I had the bag anyway. When they went to do the reversal they had to open me up again to cut all the adhesions, so I effectively had a reversal and adhesion removal. Now given that I was obviously prone to adhesions I was very worried about fertility (in fact that was the first question I asked when the doc told me about the adhesions in a very drowsy state) but in my case I conceived (without actually "trying") 3 months after my reversal.

The other rumour that I hear is that keyhole surgery is less likely to cause problems. Whilst it is true you are less likely to suffer from adhesions my surgeon was a little bit old school and did my surgery open. In his opinion he can see what he is doing better and make sure that important bits aren't tampered with too much.

Anyway, I do think everyone is different but unless you're infertile before you have the ops my surgeon was ceryain that there was no reason at all why IVF wouldn't work.

Hope this helps.

Oh yes - should explain that my surgeon is one of (if not the) the leading surgeons in the UK for this op and does about 20-30 a year so he's had plently of experience and hasn't come across an infertility issue yet....

Ant... I haven't had IVF, but I have to disagree with your "IVF is no big deal" perspective.

I think that coming from a UK perspective, you don't understand the financial aspect of IVF in the US. From my understanding, it is covered by NHS in the UK. Here in the US it is rare to have IVF insurance coverage (except in a couple states where it is required) so most couples undergoing IVF in the US will spend $15,000+ US dollars per IVF cycle. That huge financial outlay can prevent couples from buying a house, saving for retirement, etc. It IS a big deal.

There are a lot of ethical issues that go along with IVF. If you only want 1-2 children, and your first IVF cycle results in you pregnant with twins and with 10 extra embryos, what do you do? Are you comfortable destroying all those embryos? Would you put them up for embryo adoption and let them be born and raised in another family? Or do you feel strongly about giving them all a chance at life and possibly having a much bigger family than you intended?

Also, IVF comes with its fair share of complications, ranging from minor to severe complications that require hospitalizations such as OHSS. There is a greater chance of multiple birth, with increases risk of stillbirth or prematurity for babies and complications for mom. And since the first IVF procedure was only 30 years ago and it did not become routine until the last 10-15 years, there is still a lack of substantial research as to what the long-term side effects are of giving women mega-doses of the hormones and drugs that stimulate her ovaries far beyond what her natural cycle does.

IVF is wonderful if you find yourself in the position of being unable to conceive naturally. But it is also painful (lots of injections), inconvenient, comes with risks for both mom and baby, comes with a host of ethical issues, and can be enormously expensive. In short, it IS a big deal, and should not be taken lightly.

Additionally, I will reiterate what I have said in other posts... I was pregnant with an ileostomy and has almost no issues. Pregnancy with a j-pouch comes with a risk of issues just as the stoma does. And really, some of the issues that come with a j-pouch sound far more unpleasant to me, such as frequent bowel movements, urgency, and leakage.

There is no one right solution here, as every woman is different. But look at all sides of the issue. Sure, IVF seems like no big deal for doctors, but they are not the ones going through it.

I agree with Kate that IVF is not a minor procedure.

As for the terminology, you are considered to have "infertility" if you go one year with unprotected sex and do not have a naturally conceived pregnancy. Does this mean you cannot get pregnant? No. But it does mean you have "infertility."

Having been through IVF three times (two fresh cycles and one frozen) I can say it is very time consuming, emotional and medically invasive. Egg retrieval is done under conscious sedation or general anesthesia, something many of us never want to do again. THere are risks with egg retrieval including the possibility of nicking a bowel - not great for any one, but really not great for us.

Not to mention the fact that IVF has only a 40% success rate in the general population, let alone for those of us with adhesions that could be any where - hardly makes it a sure thing.

We went to a highly reputable clinic and they were very familiar with pouch and ostomy patients and they were extremely cautious with our planning. Our first cycle we only transferred two embryos so we could not have more than 2 babies (unless embryos split, which then presents a whole other level of issue). Our frozen cycle we only had one embryo and only wanted to transfer one anyway. OUr final cycle we had four embryos that were viable. We transferred one, leaving us with three embryos that we did not intend to transfer. As Kate mentions, this is highly problematic and ethically causes many couples a lot of angst. After thinking long nad hard about it, my husband and I came up with a solution we could both be comfortable with, but it wasn't easy and took us almost 18 months to come to terms with...

I live in one of the states that covers infertility treatment so I paid $50 for each of my cycles, but in general they cost between $12,000-20,000 per cycle. Not a small amount of money and out of reach of many.

All in all, if you can avoid IVF it is all for the best.

I had both of my kids with my perm ileo and while I had some issues the first time around they were able to be resolved while maintaining my health and the health of the baby.

As a woman who is embarking on her 3rd IVF, I highly recommend that you consider the *new* standard of care. I wish they knew it when I had my surgery at age 15. I had 3 step j pouch that failed, and at 18 I had my ostomy back-this time forever. There are lucky ladies who manage to escape with their fertility intact, but if you are serious about having a family and you have an option to take measures to help your fertility, please do it.
I've had this ostomy so long, its a non-issue for me in my life. Get the ostomy and improve the quality of your life. Have your babies. Pelvic adhesions are nasty things for fertility and each surgery adds more adhesions.
Yes, there have been some lucky ladies out there. Most of them will tell you that they know they got lucky.

I went thru the same dilema as you. My GI doc told me the same thing as you. My surgeon on the other hand told me that the chances are lower but by 6 months after surgery it's about 50% chance. A "normal" person (someone with out a j-pouch) has an 80% chance. My husband also said I should just get this whole chapter of my life (being so so sick for so long) behind me. So I did. You know what? 7 months after surgery (feeling better than ever for 6 months) I'm pregnant!! Living with a stoma & bag is not the end of the world but I was definitely counting down the days of the 6 months I had it!! Good luck! I hope I was helpful!

I was infertile for 9 years before the surgery and then spontaneously conceived 2 years after! As far as I know no special precautions were taken to protect my ovaries or tubes. My surgeon warned me that I could become infertile - I just laughed and said I already was infertile and have two adopted kids. Imagine my surprise! I think part of the reason I conceived is because despite the antibiotic dependant pouchitis - I am healthier than I have been in years and that is thanks to the surgery - and my yoga practice. I knowledge my experience is not the norm and you should not base a decision on it - I tell you to give you hope if you decide to go ahead. I am 33 weeks now and still stunned.

Apologies if I sounded a bit glib when talking about IVF. I know for sure it's not the easiest route as I have a good friend who has just been through her first round only to end up with an unviable (I hate that term) pregnancy and a termination. Heartbreaking.

I meant simply to point out what my surgeon told me which is that there is no reason why the surgery would cause complete infertility i.e. your eggs and uterus would still be in good working order (assuming they were before the surgery). I'm also failing to understand why getting pregnant with a stoma would be any easier than after the stoma has been reversed? If you're having two step surgery the adhesions will be formed after the first "major" surgery when everything is built. 3 step I can understand the merits of trying with a stoma. In my case my adhesions after the first surgery were so bad it is highly unlikely that I would have conceived. The surgeon removed them during my reversal and then 3 months later I found myself pregnant (without even really trying!). Anyway, apologies if I am confusing things and perhaps I have got the wrong end of the stick.

PS IVF is provided in some cases on the NHS but most people do end up paying for it here too. A real shame and I think only going to get worse as financial pressures impact on the NHS ability to fund all the latest drug developments.

Every surgery creates adhesions. So, more surgery, more adhesion risk, more fertility risks. So the new thinking is to do the least surgery possible to get healthy, then have babies, then finish surgeries.

I had UC from age 14-23. My doc decided I needed surgery because every other med had failed and we just had to get the diseased colon out. He told me one risk woman don't like is that it can cause infertility. At that point in time my fiancé and I were okay with it, I just knew I needed to get better. So 2 years ago when we talked about going off of bc we were a little nervous. It did take us almost a year but I am 27 years old, 37 weeks pregnant with a baby boy and have had a smooth pregnancy. Looking back on statistics the main thing that causes infertility is scare tissue blocking your tubes. If this happens, it would happen just as easily from any surgery being ostomy or jpouch. Also, you can have your tubes checked post surgery to see and it's not a very expensive or hard procedure (from what I have read). My surgeon said a normal woman has a 10% chance of not being able to conceive, a woman with a jpouch goes to 15%. Not sure if this helps but I guess I am very happy with my jpouch and think there is no need to wait but then again would I think differently if I wasn't pregnant? Possibly. good luck and keep us posted! It is such a hard decision, especially when we are talking about a family!