Hi all.. I’m new to the board and have just been reading through the posts here. I was diagnosed with ulcerative colitis (pancolitis) at 15 years old and I am now turning 23 one month from today and thinking about surgery. I have tried most of the meds out there without much if any success… The next step would be Remicade and while I know there’s a chance it might work for me, it’s just a matter of whether or not I want to spend the rest of my life on that (or waiting until it stops working) and risk all the potential side effects from all the other meds available while still having a higher risk for colon cancer on top of it all.

Anyway, I’ve given myself until next year to research everything about the J-pouch, meet with people my age who have it, watch a surgery be performed (I work in a surgery department so I would have the opportunity if one comes in), and meet with an ET nurse and colorectal surgeon ahead of time to discuss everything, figure out what the placement would look like, etc… I also really want someone to show me in person how the heck these bags work because it’s all just so confusing!! There are so many options and it’s hard to wrap your mind around!

But basically, my major concern at the moment is fertility. Having children is a VERY important goal of mine- being adopted myself I would of course consider that if it came down to it but being pregnant is something I’ve always wanted and it would kill me to not be able to have that opportunity, especially if I knew that willingly deciding to have surgery might be the thing that caused it.

My boyfriend is still so-so on the idea of having children. We’ve been together for 3 ½ years and he’s 25, but still in the “I’m not done being a kid myself” area. Some days he says he doesn’t want kids (mainly when we’re in Wal-Mart and there’s some kid screaming and crying about how it wants something) but usually he says he does but he’s not ready. Which is fine. But realistically I’d like to have my first child at 25. And what I’m trying to decide now is the course of action!!!

It seems to me my options are

1) Have the surgery now and then start trying in two years when I’m healed, healthy, and ready for babies, and if I have trouble, then cross that bridge when we get there.

2) Wait for two years or more with UC and try to have a baby, and hope that the UC doesn’t flare before, during, or after (which for me I think it is EXTREMELY likely to do) and put me at risk for miscarriage and other complications. And raising a newborn during a UC flare just does not sound like an ideal situation.

But then I read all the posts about women here needing IVF and some who can’t have kids at all, or who try for years and it never works out, and it all makes me so nervous. I thought for sure it would be better to not have UC and have a pouch instead while pregnant, but now I’m not so sure.

I keep trying to tell myself that most of the statistics are largely based on past studies, and since laparoscopic colon surgery wasn't all that common until a few years ago, maybe having it done that way would reduce the scar tissue thus reducing the risk of infertility.

It's frustrating, trying to decide between suffering longer and risking side effects, complications, cancer, etc from the ulcerative colitis, or potentially not being able to have children. As of now it's really the only thing holding me back from running to a surgeon's office for a consult asap.

Hey, just wanted to respond quickly and let you know a few things. I had my first surgery when I was 23, spent my 24th birthday in the hospital recovering from reconnect, and just got out of the hopsital a few days before my 26th birthday due to having to go back to a temp-ileo and abscess drain. So, I am your age, I have been there and had to make the decision, because kids are also very important to me. It was a tough one, but a VERY wise one.
I spoke with my surgeon this last time re: scar tissue because he's used the same site 3 times now to go in, he said that everything looked REALLY good, very little scar tissue when he went in this last time. Because of my complications, and possible change in diagnosis to Chron's, I've been advised to have children while on my ileostomy. We have been married for 4 years now, together for 9. We offically got the go-ahead to try a few weeks ago, but we're waiting a few months while my abscess heals all the way, and I'm feeling a little better.
I was very worried about medication during pregnancy, but talked to all of my doctors (Surgeons, GI, GP, and OBGYN) and we discussed the risk:benefit to both me and a fetus. I think you'll have to look at that and speak with some of the surgeons regarding those issues if you want to try medication therapy before going to the j-pouch.
It looks like you have a very good head on your shoulders as far as researching your options, and learning everything you can. I applaud you for doing so, and just wanted to let you know that I'd be happy to answer any questions about the surgery, medications (I've been through a lot), etc.
I know that one of the members, Kar has gone through the entire surgery and actually got pregnant very quickly, no problems at all. I know that each person is different, but she definately gave me a glimmer of hope that we won't have problems the next few years!
Let me know if you have any questions...

well you have a very difficult decision to make. I'm trying to put myself in your shoes and it's difficult to come up with a good answer. I'm older than you are(33) and already have a 4 year old son. I had absolutely no trouble conceiving him(1st month worked). When i decided to try for my second child 2 years later i also got pregnant on the first try. The only difference was that that month i was experiencing very mild uc symptoms. As soon as i found out i was pregnant these mild symptoms became the worst uc flare i have ever had, requiring hospitalization and ending up with perforation and the J-pouch. It has been 3 years now and i've been trying to concieve for a year with 1 failed Ivf cycle. Due to the multiple surgeries both of my tubes are completely blocked. So I don't know which road you will choose to take, but this was my experience. Having a child is a tremendous responsibility and you and your boyfriend have to be ready to give up a lot. You will when you are ready also get a lot back in return. There are many women out there that have had the surgery and have no problem having children. so i wish you the best of luck on your journey ahead.

I don't mean to sound preachy, but I think you have a bigger issue here than your health and that is are you AND your partner ready to be parents (I know you are still thinking 2 years out, but...)? That needs to be the first consideration. My husband and I will be married 10 years this October and have a really solid marriage and were totally ready to have kids (we were 35 when our son arrived and will be 37 when our daughter arrives in 5 weeks) and let me tell you, nothing, not even my illness, compares to the stress a baby will put on your relationship. Don't get me wrong, we love our son and are thrilled to be having a daughter, but there is so much more for us to have conflict over now. If your boyfriend isn't ready and you push him into it, he will resent you or the baby or both.

As for the health part, I advise you to be as healthy as you can before getting pregnant. Whether or not that means surgery first only you can answer. But, have you thought about things like - what if you can't work during the pregnancy or for a time after? Can you afford this baby if you are out of commission? If you are out of commission (you have complications from surgery or a bad UC flare), who will care for the baby? How will you feel if you are too sick to enjoy the baby's "firsts" like crawling, walking, etc...? Is it important to you to breast feed? How will you feel if you are too sick to do that?

Keep in mind there are no guarantees. You could decide to have the surgery, have no issues and be ready to go in a few months. Or, you could have complications that would delay things by months or years. If you wait, you could have a bad UC flare that impacts the pregnancy and or the baby, or you could fly through it with no issues. You just won't know. So you ahve to make the best decision for YOUR health and then figure out what that means in terms of kids from there.

This message has been edited. Last edited by: JillM,

Having been where you are in making the decision to have surgery, I certainly understand your concern (and that was without the consideration of fertility at the time). Throw in the fertility issue and it become a little harder to decide what is the right decision for you.

I had my son before I had any symptoms of UC but I had my daughter toward the end of my battle with the god awful disease. I was soooooo ill during my pregnancy with her that I became dangerously anemic, had to take prednisone (which is not recommended during pregnancy) and had to be induced early for fear of complications resulting from too large of a baby. That said, both deliveries were vaginal and perfectly normal, no complications. However, it was not fun having UC during pregnancy AT ALL.

All through my daughter's first four years on this earth I was sick more than I was healthy and it was very difficult to find the strength to take care of her and my son.

I am now 4 years post j-pouch and have had ZERO problems since having surgery. I had my surgeries laproscopically but I'm not sure that has anything to do with my success, might just be a coincidence.

I had heard there may be problems with having a baby but it wasn't an issue for me because I went through a separation and divorce from my ex and was not looking to have a baby.

Last year however, I met and fell in love with the man of my dream...and without even trying, I became pregnant! My fiancee and I had unprotected sex ONE time during an "iffy" part of my cycle and boom I was pregnant!

That said...I have been having an issue with adhesion pain during this pregnancy. Apparently part of my small intestine has adhered itself to my uterus and as it grows, I will experience pain. Is this fun? No, but so far (24 weeks tomorrow) the baby is perfect and is growing well in spite of my change in anatomy and the unfortunate adhering of my intestines.

I think that first and foremost, we need to live in the present. Yes it is good to prepare for the future, but there's no telling what will happen in the future anyway. After all I have been through and am still going through, I can tell you that having surgery was one of the best things I have ever done for myself.

Alex

Hi,
I would have to agree with Jill - I had my first daughter before I was diagnosed with UC and she had extreme colic as in screaming 18 hours a day for no apparent reason - and that was very, very stressful for a young couple who both desperatly wanted this screaming little girl (and I am a NICU nurse). Then I was diagnosed on her 1st birthday and in the hospital for 2 weeks. I then did all the drugs available, the steroid rollercoaster, immunosuppresants and finally Remicaide - which by the way after the first two infusions I thought yes, this is it, I feel amazing, great and was ok with not having another baby (which we wanted) then the bottom feel out - the Remicade was just masking my symptoms and I got sicker than ever before - and even the high dose steroids did nothing - I thought the steroids were literally going to make me crazy. I had the surgery and a few complications to say the least - but after being healthy for one year I got pregnant, which it took me longer than the first time, but I had a beautiful baby girl by c-section (and this one didn't scream!) anyway, I guess what I am trying to say is - my husband and I have been married for 12 years and been through 10 years of my disease, 9 major surgeries and thousands of dollars all to try to keep me able to live a life and be the wife and Mom I want to be - not to mention the stress of just having kids. I think you need to make sure the two of you are ready for anything as far as your health goes first - maybe he should talk to someone (like my husband) who has had to care for someone through all of this. I'm not saying what happened to me, will happen to you, BUT you have to be ready for anything as a couple. I know you really want kids - they are wonderful and amazing, and just because you have the surgery doesn't mean you won't be able to have kids - look at Jill she has had one with another on the way with a perm ileo. I think I am rambling now - my main advice is to take care of yourself first, look hard at your relationship and work on it's strength, and worry about kids when the time comes.
Oh and as far as surgery goes - when you need it, you will know.

Feel free to pm or e-mail me.
Mikaela

Set for perm ileo surgery June 18, 2008

Hello!
I was diagnosed with UC at 13, had first surgery at 14 and the takedown at 15. I am 25 and just had my first baby. He's 6 weeks old.

We did have trouble conceiving but we had a lot of things going against us. None of it necessarily had anything to do with the surgeries. My husband had low morphology. (his sperm was deformed). I RARELY ovulated. (we still don't know why). When I did ovulate, it wasn't a very strong or good quality ovulation.
We went the cheaper route when it came to fertility treatment. We had artificial insemination with my husband's washed sperm. It worked great on the first try!
Please think of your health first. You need to be healthy to have children. They are very demanding. I thought it would be a piece of cake but you do get tired....and I cannot imagine being sick with a flare while trying to take care of my son.
I say get healthy first.(if you have the option) Then, have kids.
I would talk to different surgeons. You want to find out how many surgeries they've performed. I would get a surgeon that is very well-known for this procedure. The more experience, the better at it. (in my opinion)
I am lucky to not have any scar tissue blocking my tubes. (not that it makes a difference)

Anyhow, that is all I can think of.
I want to wish you luck with whatever you decide.
I was very young when I had surgery, so I never asked about how it would affect my fertility. Luckily, my parents did.
You could always ask the surgeons. Mine told me that I shouldn't have any additional problems with conceiving unless there was a lot of scar tissue.
I had a c-section for delivery, and my OB said that there was very little!!
Good luck to you!

I think it really depends on your perspective and you will get a lot of different answers. As someone who was made infertile by the surgery (a risk which wasn't known at the time) who desperately wanted to have kids and can't, I say do whatever you can to wait, take meds, get through what you have to until you can have a child before having the surgery. Illness and an infant are very miserable, but I can tell you I would love to have that misery instead of living with the misery of infertility. If having a child is really important to you, I advise doing so before the surgery.

All the doctors (GI, Gyn and Surgeon) told me I needed to be in a STRONG remission when I conceived. They said that truly does make a difference as far as how well pregnancy goes. Additionally, alot of the medicines that are used to treat UC (even maintenance drugs) are not ideal to use when pregnant. So my advice to you would be to really focus on yourself right now - what is the best way to get healthy? Surgery or not, you need to be healthy to maintain a pregnancy and raise your child. I would caution you not to put a time table on things - you are very young and have plenty of time to have children, even past 25. I am 32 now and awaiting takedown.. I am so glad I chose this route, regardless of whether or not I have fertility problems in the future. It is an individual decision though - you have to do what is right for you. Good luck!