Saturday, January 28, 2012

Pregnancy and your Ileostomy

I've been wondering about that for a while, since even before I got my first loop Ileo.

I'm what many would quantify as underweight, but for me, this has always been where I'm at, give or take 10 lbs. With my mixed Chinese ancestry, my body is unfortunately small. I'm not a stack of ribs like before my surgery, but I'm smaller than I'd want to be. Still, for all that, I've always had a terribly regular menstrual cycle. YOU WANTED TO KNOW, DIDN'T YOU?
Although 10% of ileostomates have fertility troubles (mostly due to blocked fallopian tubes via adhesions) I don't think that will ever be my main concern. My family... we are fertile people. We don't have five-thousand children, we have about 2 or 3 per household, but generally, first try always resulted in what my husband annoying refers to as "crotch fruit". (For the uninitiated, "crotch fruit"= children. I don't know from where he got that phrase, and frankly, I don't want to know.) And some women end up having fertility problems because of gynecological issues after surgery.

A very small percentage of men have sexual dysfunction problems after ileostomy, j-pouch or colostomy surgery.  Sometimes they can get it up but can't get it off, and sometimes they just remain flaccid. This isn't trouble from the "Ileostomy", but from is they are removing the colon as well and do some hasty slices to those innocent little nerve endings around the rectum. Obviously, if your surgeon has done your type surgery over 100 times successfully, with very little to no complications, your chances of recovering without any trouble are a lot greater.  

So here are my general worries/ apprehensions regarding pregnancy for us female Ileostomates:
*Sometimes, with the enlarging utererus, intestinal obstructions are unavoidable, and sometimes even last for months long at a time and women are put on TPN to just to let them live.
*With the internal pressure of the growing human parasite, the stoma enlarges and sometimes prolapses. Although, "Women who have had an ileostomy also can have a prolapse or obstruction of the ileostomy during pregnancy. Waiting a year after the (initial) surgery before becoming pregnant reduces that likelihood." ( Source)
*peristomal hernia!
*need for second surgery to relocate ostomy!
*All these and more listed here!!!

& here are:
*Some facts from Inside Out On-line May/June 2000
*Someone who's had a pretty good result
*Some mixed results
*More brief mixed
*Some don't seem to have much trouble at all, either conceiving or carrying
*Blockages, being on liquid diets
*Here's a terrifying page (the whole 3-page reading is worth it though) of women dying from obstructions that doctors don't understand or dismiss due to them being pregnant, and other delightful complications that mostly seem obstructionary related.

Although  Google searches will show you a great deal more, I have yet to come across personal stories, as in day by day descriptions of life with an ileostomy and pregnancy as in Blog form. On my blog roll, I have someone who was just starting a pregnancy with an ileo, but sadly she lost her baby and doesn't know when/if she'll conceive again.

And yet, at the end of the gestation period, how the hell is this creature going to be expelled??

 Caesarean-sections are generally discouraged as a form of birthing for Ileostomates, what with scar tissue and the actual ileostomy itself, many doctors are wary of creating ever more the complications and ever more scar tissue.
Shitty news for me.
Because of my internal scars and due to my body size, I WILL need caesarean. My mother, who is a significant amount larger than me (not in fat quantity, just larger bones) needed C-sections as well. We tend to have non-widening hips in our family, even with the rush of pregnancy hormones. Natural selection is trying to kill us out. Fuck you Darwin.

I also am really interested to see in what ways a woman's body returns to normal after pregnancy with an ileostomy. What happens with the stoma? And what happens with your stomach? Do the loose folds and shit make it hard to get an external appliance that fits properly?

Of course, according to logic, this isn't something I should be considering even THINKING about right now. We have no money, my career hasn't shot off anywhere, Mr B still needs to finish Grad School, my health sucks, and it's not that I have a hungry uterus that squees in joy each time I see someone elses baby, either. This is just an honest wondering of mine, a daydream if you will, that might or might not ever come to (crotch-fruit) fruition.
And then I have to ask myself all the questions women ask themselves anyway, outside of being an ileostomate:
Am I too selfish to have children?
 I value my alone time. Whereas my heart used to ache with loneliness, I have grown accustomed to and now enjoy my solitude, as that is when I can work the best. These mornings before Mr B wakes up are my easiest time to work. As soon as he wakes, I am busy preparing food for him, and as we live in a one-room abode at the moment, I'm more inhibited and don't work as well. (It's most def not a misogynist relationship either. I honestly LIKE to get things ready for him, to cook for him and do little things like that, because I feel like I'm contributing and helping in the areas where I can help and he does the other things that I can't do. Like pieces of a puzzle that fit together, or steps of a stairway.)

My husband is a very gentle patient man. He is soft-spoken and kind. I get frustrated, I'm impatient, I'm flustered under stress. Babies are stress. Make no mistake, they look cute (occasionally, after the vernix caseosa is wiped off and they're not crying) but I already have trouble sleeping, so I'm not really gonna dig being woken up to feed. (Although I guess I was a silent baby, according to my mom, and never woke her during the night. I don't believe that is the norm, however.)
Even under ideal circumstances, with perfect health, babies will stress you the fuck out. Even more so when you are dealing with a fucked-up stoma that may or may not be bulging with hernias in need of surgical repair and possible relocation after expulsion of the miniature human.

So I have to honestly ask myself, what are my reasons for wanting a child? Because I think I will be a good parent? Who honestly can say that? Every mother I know wishes they had done things differently, as is the human condition of someone with a conscience, I suppose.
A child isn't an extension of myself. It's this small being with its own ideas and comments and likes and needs and wants, and I wont understand them. And they wont understand me. And to them, I will just be a provider and someone that loves and wants to protect them. But they will become a mouthy teen, they will want to drink and smoke and do things of this nature, and they will becomes confused young adults on their own time.
Do I think that I have enough wisdom to pass on to another human being? Do I want a child just because of biological urges, because I think of it as an expression of our love?
I don't really have genes I'd want to propagate. I'm not the best looking, not the smartest. My husband is damn sexy, but the rest of his family is questionable, at best.
We could always adopt, I think about that also quite a bit as our best friend was adopted from Korea and we love him like crazy.
These questions still hold true for adoption though, maybe more so as more thought and money is put into this, and then there's the possibility that the birth-mother of the adopted child consumed drugs or alcohol during her pregnancy, or has a family lineage of mentally or physically disfiguring diseases. Sigh.

At least if it was my own pregnancy, I'd know no chemicals entered into the gestation equation. Nutrition is a concern for me, however. Most of my nutrients come from Ensure and vitamins and tons of supplements... and as there are plenty of stories of women with Ileos that are put on TPN for their last months of pregnancy for whatever reason.

I always swore I'd be a better Buddhist by the time we were ready for children. I do not want them growing up without a temple nearby, and monks to help guide them through their development, so they do not become like everyone else, like myself as well, stuck with my mind in this plane of existence, always anxious and fraught with indecision. If they can grow with their minds at peace, none of the ordinary trip-ups of humanity will harm them. It would be... possibly the greatest achievement to raise children that were wise and unconcerned with the physical world. 

So for now, this is just a consideration in the back of my mind, because who knows? Things change. Life changes. This time three years ago, if you told me I would be married and move out of the country, I would have slapped you with rage-tears in my eyes for your filthy teasing lies. I would never have imagined that I could move out of the basement, much less leave the house. My body was a cage.

back then, literally all day and night was agony, torture-- there was no life for me to have. There was nothing to distract me from my body trying to kill itself, nor from me wanting to kill myself... because there was no way out. Every doctor told me either I was crazy, I was overreacting, I was the one creating the problems, that no one actual did a surgery for my problems, that such things didn't exist, ect. I was so hopeless and felt so helpless and lost and like there was no direction.
Shit, getting an ileostomy didn't give me the life of a god, I still have problems, of course I do--but who the fuck cares compared to that tiger pit of despair I was mired in for the majority of my life. Living the way I had  limited my choices for the future until there was nothing left but every day, every minute just trying to hold on for another hour because it would have crushed my mother's heart if I had let go.

And really, isn't that what you fear the most, if you choose to have a child, if you choose to be a parent? That your child will be in pain? That one day, you too will have to watch them suffer and hurt and cry in pain, and be helpless to stop the illness that terrorizes them?


  1. I have recently found your blog. Thank you for all of your honesty: the good, the bad and even the ugly!

    I have not had surgery yet and am still weighing my options, but as you said in this blog, my body is a cage, even after surgeries meant to "cure" my VERY rare disease (any doctor who says something can magically cure you seems to always be WRONG). I have seen way too many doctors on their high horse and my most recent doctor, before suggesting a loop ileostomy, suggested I was anorexic. My therapist and I had a good laugh at that one. I am still unsure if this is the right option for me, but I know that if it is my option at 30 years old, I can overcome, just as you have.

    Every day is a new day. Tomorrow must be better than today, even if by just a little.

    By the way, thanks for the clothing tips! I was pretty worried about that!

  2. Hey! Omg--I hope you check this post again, because I'd love to hear what you've been through. I hate being labled "rare" too. It's gotten to suck something major. I just want to have ORDINARY easily defined diseases. But the suggestion of loop is definately better than not having it. My loop is the pictures with the two little rosebuds. Now I have a perm. and it's only one.
    Do update me!

  3. I sent you an email explaining everything. I may put everything out there on the web someday, but if I ever want a job, I'm still wary about people seeing things on the internet since less than 500 people have my disease. Hope you are doing well today :)

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  6. I’m 34 weeks pregnant with an ileostomy. It was quite the shock finding out as we didn’t think we’d be able to conceive again. Our son is 4 and was pre-ostomy. I have had a pretty smooth pregnancy up until now. I’m experiencing a never ending obstruction due to adhesion. It is incredibly uncomfortable, but I am pushing through it with the help of a “red rubber catheter”. Between my OBGYN and Surgeon, it’s been decided that I will have a cesarean and my tubes tied. I truly understand your reservations and believed that I would never have another child. But.. That kiddo’s coming if I’m ready or not! All I know is that in the last three year of living with an ostomy I have acquired strength that I had no idea I was capable of. I’ve been blessed with a husband who has held my hand and met every up and down head on. And we have the most wonderful little man who through our struggles has gained a degree of compassion, tolerance and understanding that most adults lack. I’m excited to watch my two boys grow up.

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