WWYD? family planning dilemma (long and possible TMI)

[boogiemomz]

DD is 4 months old, and having her has been by far the greatest thrill and joy of my life, and has definitely made me so excited to have at least one more. i want her to experience a sibling relationship and the lifelong closeness that comes with that.

meanwhile, i got really sick with an ulcerative colitis flare at the end of my pregnancy and it got worse after delivery, and last month i had to have my colon taken out. it has been extremely tough and continues to be, as i am still healing and cannot pick up my baby for at least another couple of weeks and need full time help with her (have had family to help but am hiring help for the next couple of weeks), but i am feeling better (this surgery is theoretically curative for UC).

so here's the dilemma... this surgery left me with an ileostomy (a little piece of my small intestine is pulled out my abdomen and empties waste into a bag stuck to my belly), and i will need 2 future surgeries to repair it, involving a reconstruction of my small intestine to make it function like a colon so that i will have "normal" plumbing again. but that surgery will involve a lot of messing around in my pelvic cavity and moving my reproductive organs around and out of the way to do the reconstruction, leaving lots of adhesions and scar tissue. as a result, infertility rates increase threefold after this surgery, i think something like 48% of women who have this surgery experience infertility afterward. therefore, many surgeons recommend that women delay the reconstructive surgery until after they are done having children.

when i decided to go forward with surgery, it was with the hope that i could have all surgeries done by the end of the year so i could get on with my life, including trying to have another baby/babies later on. i did not realize that the second surg. was the one that decreases fertility, i thought i was taking that risk by going forward with the surgery at all. but apparently my fertility should not be compromised at this point, because the surgery i already had was not super complicated and they weren't in the pelvic cavity very much. i NEVER thought i would have to consider having children before finishing the surgeries.

reasons i want to finish the surgeries first:
-i can't imagine being pregnant/delivering a baby with the ileostomy. it is possible and plenty of women do it (lots of people live their whole lives with ileostomies and lead perfectly normal lives), but i am still getting used to this and would so much rather go through my pregnancy with my regular belly.
-i don't want to have to go through surgery and recovery (long and painful) with a(nother) baby at home, having experienced how tough it is being away from just DD, and i will have a hard time totally depending on someone else to take care of my baby (again).
-there ARE women out there who have healthy pregnancies after having the reconstruction

however, i am scared to go forward with the surgeries and then find that i can't have more children and know that i made a decision that caused that. i never thought i would do IVF myself, but now i feel like i would consider it if it came to that. part of me thinks that i should just go ahead and try to have more babies and deal with surgeries later, but i really didn't want to be stuck with an ileostomy for years and especially don't want to be pregnant with one. plus i'm afraid that if i wait until after i have more children, i'll never go through with the second surgery because it is so hard and inconvenient, and i will be stuck with the ostomy. i'm afraid that in the long run, though, i will not lament the fact that i endured a pregnancy/more time than i hoped with an ostomy, but i would lament the fact that i lost the ability to have more children.

sorry this is so long and rambling. i'm just kind of tormented by all this right now and would love to hear thoughts from other moms who can relate to the desire to grow my family. thanks for any thoughts.

[LMPC]

I am so sorry that you are having to deal with this while you are getting used to being an awesome new mommy! (Congratulations, BTW on your amazing new LO!) Ultimately, you will decide what is best for you...even if there are 100 responses to this that all say the same thing....you will search your heart and do what feels right for *you*! I will say that one sentence that stuck out for me was "i'm afraid that in the long run, though, i will not lament the fact that i endured a pregnancy with an ostomy, but i would lament the fact that i lost the ability to have more children."

Sending PT's your way! :hug5:

[Indianamom2]

Oh wow, that's a truly tough situation.

Obviously, I can't say what I would do because I've never BTDT, but I have dealt with the uncertainty of infertility. When we were trying to get pregnant the first time, my body was not working quite right and I didn't ovulate. We tried for a year with lots of doctor's appts., stress and tests before resorting to fertility drugs. Then I got pregnant on Clomid, but had an early m/c. Finally, after a year and a half and more Clomid, I was able to get and stay pregnant. DD#1 is now 5.5 years old.

Having had relatively minor infertility issues, I can attest to the stress that it places on a couple and on the individual. The waiting and hoping is tough, and it takes a toll.

Was it worth it in the end? Absolutely, no question. Would I choose to go through it again? I wouldn't want to. If it was the only way to have another child...then yes, I'd do it all again in a heartbeat, but with my eyes a lot more open to how hard that path would be.

Out of curiosity, have you talked with your doctors/OB about future pregnancies given your particular situation? Maybe they would have some more insight? I know that more advanced infertility treatments are pretty hard on the body too, so that would be something to consider in this whole process.

:hug:

[SnuggleBuggles]

What a tough choice.

It is good to think that even if you don't have any more kids though that you really aren't short changing your dd. Close in age doesn't = close necessarily so don't worry about that part. If you have the surgery and you find that you can only have your one dd then I bet you will all have a happy, healthy life. I know it isn't your vision or hope. It would be hard to get past that, I am sure. You never know what life is going to through, do you?

If it were me, I think I would have the surgery and take my chances with fertility. I feel like the benefits of the surgery are worth it. Hard decision though and I do not envy you!

Beth

[newg]

this is a tough choice..........

what about the surgery would make infertility more possible? Could they harvest eggs before the surgery to possibly use afterwords (if needed)? Or is it something else?

Could you get more opinions from other people.....possibly a fertility doctor to see how they could work with you??

[pinkmomagain]

First of all, congrats on your baby. And congrats on your surgery....I know of several UC sufferers whose lives have been completely turned around for the better having had their colons removed. My oldest daughter has UC (dx at age 7) and we control it for now with medication. I am sorry that it's been rough timing for you and you are faced with this decision.

I'd be inclined to finish with the surgeries and get on with life. Have the drs given you any numbers (percentages, chances, etc) to consider? Is it possible to reasearch reconstrucive surgeons who have high success rates of patients getting pregnant post surgery (if they track that kind of thing)?

[ThreeofUs]

Well, congratulations on your successful surgery, but such a hard choice!

IIWY, I think I might try to talk to some moms who got pg with the ostomy as well as to your docs and surgeons. It might be a lot easier than you think, as you stand now just beginning to learn to deal with it.

From a medical perspective, ttc afterwards (with fertility treatments and all the associated stress, pain, and headaches thereof) might actually be more difficult.

But most of all, give yourself some time. You just went through an incredibly difficult period, iirc. You probably need time to get healed, time to get used to a new normal, time to regroup. You've been through a lot, emotionally and physically. I think with some space, and info from people who have seen both sides of the choice before you, you'll see the right path for yourself.

((hugs))

[o_mom]

I'm sorry you have to deal with this on top of trying to recover. :(

Maybe talk to the doctor more about what the infertility issues are with the surgery. Is it problems conceiving? Problems carrying? Delivery? What are the treatments? Ask lots of questions and maybe have them set you up a consult with a reproductive endocrinologist to find out what might be involved.

Infertility is something that affects everyone differently and something like IVF might be overwhelming to some people, but others may find it not as stressful as other treatments. Also different parts of the infertility journey are harder for each person. For myself, I found the diagnosis period to be far more stressful than the treatment (surgery, etc.).

Secondly, find out when you need to make decision. You are still in recovery, it is all new, and you were only expecting a temporary situation. Changing your expectations so much cannot be easy for you. Can you give it a bit and see if you still feel as strongly? Try out some thoughts of different scenerios to see how you feel. Does the doctor that did the surgey have a therapist they can suggest to help you work through your feelings on this and the various options around having another biological child?

Such a huge change in plans and so many unanswered questions must be very overwheming for you and your family. I hope you can find your way. :hug:

[MamaMolly]

We've dealt with fertility issues, both of our children are IVF babies. If you want to pick my brain about that I'm happy to answer questions here or by PM. No holds barred! :) ITA with the PP that perhaps you need to consult a reproductive specialist. Having walked that path, reading that 48% of women with the surgery have fertility problems would seriously give me pause. We started 'trying' again when DD1 was 6 months old. She'll be about 4 when DD2 is born. Before I got pregnant with DD2, I had to come to terms with the idea that DD1 might be an only. Just getting to where I could accept, deep in my heart, that I probably wouldn't have another was *as* hard as dealing with the initial fertility problems.

I'm just about 38 weeks along with DD2 I also can't imagine what it would be like to go through all this with an ileostomy. Would you be open to talking to someone who has actually been through it? I really think that advice from someone who really, truly knows what THAT is like would be tremendously valuable to you.

[boogiemomz]

thanks for all the responses. to address some of the above questions, the fertility issues have to do with scar tissue and adhesions that form after the surgery. the reconstruction happens right next to the reproductive organs so the uterus and ovaries have to be retracted away (pulled and pushed out of the way) during the surgery, causing adhesions/scar tissue to form, potentially blocking the fallopian tubes, etc. so it is sort of a mechanical problem, i think ectopic pregnancy is also a risk.

as for talking with docs, i think the surgeons are probably more familiar with the percentages than the OB folks, and the threefold increase/48% infertility rates are from a huge review paper that was published in january about current knowledge of pregnancy and inflammatory bowel disease. we are moving out of state this summer and will be following up w/ a surgeon there about the rest of the series, so i won't get her take on things until then. i imagine i could get a referral to a repro specialist then.

there is an online community for folks who have had this surgery with a women's issues/pregnancy forum, and lots of women post there who have faced this dilemma (and who have gone both routes, waiting or not waiting), so that is helpful. i just wanted to gauge things from the mom perspective, and i always find such thoughtful and helpful responses here. i really respect you all and appreciate your input.

the other issue i forgot to mention is the whole sex with an ostomy thing. dh seems pretty freaked out about it, he has brought it up once, saying he's excited to have sex again eventually, but he's "not ready." i'm not ready either, but i'm really pretty uncomfortable with his affect about it. he has a way of saying hurtful things without meaning to, like suggesting that we buy a scented candle for the bathroom. i suspect that if i went forward with the surgery before babies, we might go the whole time without having sex at all and he would be fine with that. the idea of all the baby making sex that would be necessary before surgery is daunting to me, because i'm afraid he thinks i'm gross. when i talk to him about it he of course says he doesn't think that, but he hardly shows me any affection at all right now, even when i ask him to and tell him i need it, and then makes comments like the above to boot. he also brought me a giant tub of hand sanitizer the other day and asked that i please use it before handling the baby, and asked that i wear gloves when i go to the bathroom.

one of you made the point that i need to take time. it's very true, i still have a lot of healing to do and it will be at least july before i can even have the surgery if i want it (after we move). i have just recently come to understand the implications of the second surgery/fertility thing and needed some mama support, and also wanted to get your take on the situation. thanks again for your thoughts and hugs. really appreciate the support! :grouphug:

[o_mom]

More hugs to you. :hug:

Do you think your DH might be willing to consider counselling? It is hard on him too, I imagine, though nothing compared to your end and he needs to get his act together.

I (and maybe others, but I'll only speak for myself) was suggesting talking with an RE about the treatments, not just the IF rates, to see how you felt about them. The surgeons may know the stats, but a good RE can most likely tell you what the chances of overcoming them are. They may say, for example, given the situation, you should go straight to IVF and bypass the trying for a year, drugs, etc. That may or may not be better mentally for you, but they can tell you what they think the best way to go about it is, what kind of success to expect, costs, etc.

Good luck!

[boogiemomz]

we had a counselor that we went to on a weekly basis in the town where we lived before (where we are moving back this summer), so i would imagine we would go back to her when we get back. with his work schedule, the baby, and the financial burden, we can't make it happen right now. he is open to that in general, i know, and we have had some success with that in the past, but can't do it right now. i know it's hard for him, i think i would have an easier time supporting him if he were a little more attentive to me and how hurtful his approach is sometimes. i really wish we could get into counseling right now, and i may pursue it yet, considering how tough this has been lately.

those are great thoughts about the fertility counseling. i never thought of it that way; that is something i will probably pursue when the time comes to make a decision. thanks!

[larig]

First of all, sorry to hear about your medical issues and the worries you are having about potential conception problems. I hope your DH can be lots more sensitive to you, Hopefully when he has had some more time to think about things, he'll show a little more compassion.

As for the TTC, I don't have any advice for you there, because it sounds like you're doing the most important thing you can do--research and ask questions. I will offer this if it may provide some comfort... I am an only child, and honestly, I've never longed for a sibling relationship. I had a very full childhood with lots of close cousins and friends. I have incredibly close relationships with my parents and never felt anything was missing from my life. If it turns out that you can't have another child, your DD will too, because you seem like the type of mom who wouldn't provide anything but a happy and full life.

ETA: after reading Fairy's comment I wanted to add, my DS is also an only by choice (DH is one of six kids interestingly enough).

[Fairy]

I am so sorry this has happened to you. You have a very good attitude about your condition, prognosis, and known steps to reconstruction/ recovery. That's a pretty big deal right there.

If it were me in the situation you describe, from the prospect of pregnancy with the colostomy to the emotional and behavioral challenges surrounding intimacy that you have described, I would not want to pregnant during this time. Like Larig, I, too, am an only child, I had a very good and full life without siblings, MY DS is an only child, and when it became apparent that another one would be unlikely I was perfectly fine with that; I don't think it's a big deal. So, that's one of the drivers in how I'd feel if I were in your position. You clearly do want more children and have a very tough choice to make. I agree with one of your first posters that we can all say all kinds of things, but only you can choose the right answer for you.

Ultimately, if I were in your position, I would want to get my own physical, sexual, and emotional health in check so that I can be the very best-positioned to then have healthy sex that doesn't cause me to worry or feel bad about myself or give me stress, then have a pregnancy that doesn't have complicating physical factors. I would also do what I could to freeze embryos just in case.

I think you're very brave, I admire your attitude, not to mention fortitude, and your DD and any future DCs are very lucky to have a mother like you.

[karstmama]

wow. interesting & tough question, and some thoughtful responses so far. i don't have answers but want to maybe rephrase some stuff & pose some questions.

just so you know, my son had an ileostomy for a year. i don't know if anything with adults is different, but it wasn't all that hard to care for and had no odor unless the bag was coming unstuck (baby bags are one piece, not the two piece 'tupperware' kind).

so i'm a bit taken aback with your dh being so concerned about odor and hygiene - this may be a tmi question & you don't have to answer, but are you having leakage or other issues, or is bowel-type stuff a hangup with dh in general? because emptying or changing your bag then washing your hands should be *plenty* - no gloves needed unless he's going to wear them, too, because guess what? he poops & wipes as well! who'da thunk? so, to me, this sounds more like a hangup about poop than an actual problem you are having that he's responding to.

so, if he has a hangup about poop, you may want to have the reconstruction sooner rather than later.

so if you need to do that to keep your relationship on track - which is important - but want to have another child - which is also important - while being careful not to consider anything as a definite or given, it sounds like you need to weigh & be sure you're ok with unintended consequences of either decision. on the one hand, being reconstructed before another pregnancy attempt might make the marriage better, but on the other, keeping the ostomy for a bit longer makes a pregnancy more likely. of course, this doesn't mean that you won't end up divorced (goddess forbid, just saying for discussion) even if you have the reconstruction next week or that you won't easily get pregnant after a reconstruction. it just means that you need to be at peace with either relationship problems if you stay with the ostomy or less fertility if you have the reconstruction first.

so think about those angles, too. and peace to you in your decision making. i'm not trying to make this a cut-and-dried, everything-is-definitely-tied thing, just want you to be happy with whatever you decide.

[sste]

Perhaps your doctor or a fertility counselor could find some former patients who would be willing to talk to you about their experiences being pregnant with the external pouch versus TTC post-surgery? Can't hurt to ask him or her. This might give you more info and a first hadn perspective.

I also think you need to decide how big of a deal having a second child biologically is to you. If it is an absolute top priority and it would be a longstanding source of sadness to have an only child - - and you don't see yourself being emotionally or financially up for adoption - - than I would think seriously about TTC now. 50% is not terrific odds.

I - - and this is just me, no data, no proof - - but I have serious concerns about the long-term effects of undergoing alot of fertility treatment in terms of cancer. I don't think that data is there yet and really won't be for a few more decades. Personally, I know one person with a genetic predisposition (unknown to her at the outset but actually there is a test for this one gene) to ovarian cancer who had years of fertility treatment and that treatment brought her risk stratospherically high and she is in fact dying of ovarian cancer. I don't want to upset all the mamas here who have fertility treatments but it boggles my mind that we all freak out over BPA in our drinking containers but fertility treatment no one bats an eye at!

FWIW, my dh who is a doc was very adamant when we were having difficult trying to conceive that we either adopt or I go through max 1-2 rounds of IVF, no messing around for years at a time with injectables.

[boogiemomz]

wow. interesting & tough question, and some thoughtful responses so far. i don't have answers but want to maybe rephrase some stuff & pose some questions.

just so you know, my son had an ileostomy for a year. i don't know if anything with adults is different, but it wasn't all that hard to care for and had no odor unless the bag was coming unstuck (baby bags are one piece, not the two piece 'tupperware' kind).

so i'm a bit taken aback with your dh being so concerned about odor and hygiene - this may be a tmi question & you don't have to answer, but are you having leakage or other issues, or is bowel-type stuff a hangup with dh in general? because emptying or changing your bag then washing your hands should be *plenty* - no gloves needed unless he's going to wear them, too, because guess what? he poops & wipes as well! who'da thunk? so, to me, this sounds more like a hangup about poop than an actual problem you are having that he's responding to.

so, if he has a hangup about poop, you may want to have the reconstruction sooner rather than later.

so if you need to do that to keep your relationship on track - which is important - but want to have another child - which is also important - while being careful not to consider anything as a definite or given, it sounds like you need to weigh & be sure you're ok with unintended consequences of either decision. on the one hand, being reconstructed before another pregnancy attempt might make the marriage better, but on the other, keeping the ostomy for a bit longer makes a pregnancy more likely. of course, this doesn't mean that you won't end up divorced (goddess forbid, just saying for discussion) even if you have the reconstruction next week or that you won't easily get pregnant after a reconstruction. it just means that you need to be at peace with either relationship problems if you stay with the ostomy or less fertility if you have the reconstruction first.

so think about those angles, too. and peace to you in your decision making. i'm not trying to make this a cut-and-dried, everything-is-definitely-tied thing, just want you to be happy with whatever you decide.

thanks so much for sharing your experience and insight. i have the same frustrations about dh's concerns, especially because, wait for it, he's a physician. an intern (first year out of med school), but still. his concern is not poop, per se, but germs and infection. he acknowledges being somewhat paranoid about it, but says he can't help it. i have posed to him that he should wear gloves every time he goes to the bathroom. i have not had any leakage problems yet, but the odor is there when i empty the pouch. he is also pretty squeamish about odors (he is going into a specialty that doesn't involve a lot of bodily fluids). this frustrates me to no end, because he's a freakin' doctor. we also just had a baby. poop is part of life. get over it.

i also really appreciate your insight into the dynamics of the decision making process. unintended consequences should be a big consideration in any difficult decision. i had thought about the need to be okay with only having one child if i decide to go forward with surgery, but you make a good point about the advantage to me personally and to our marriage and the health of our family. thanks to you folks who made the point that being an only child isn't necessarily a bad thing. not to sound like an annoying braggy mom, but my daughter is, i think, an unusually delightful 4 month old. she starting sleeping 12 hours at night at 2 months and has not stopped (i'm aware this could change at any time, but still going strong at 4+ months), she rarely gets upset and is generally very happy and smiley most of the time. in a lot of ways, i have no idea how tough a newborn can be. it almost seems strange to me that, with a 4mo, i feel like i can't wait to have another one. but i need to remember that it's very possible that, even if i got pregnant right away, it might not be as easy and blissful as this has been. lots of things to consider... so thanks very much for your thoughtful and articulate perspective on things.

to be fair, dh has been really great tonight... we had a major fight this afternoon about how i am struggling with this, and he was an a$$ at first but is now talking about ways that we can check in with e/o better and prevent getting so far down on each other that things blow up in our faces like they did today. years of therapy weren't entirely lost on him. :)

thanks to all of you for your sweet compliments and encouragement. so thankful for my BBB friends! :love5: