More advice needed...

[JennifersHope]

HI,

Where else do I turn for advice and input... I have a big decision to make and need some advice.... As you know I have been in the hospital for over three weeks now and I have diviticulitis with a microperforation as well as huge fibroids in my uterus that are blocking me from being able to pee.

I have to speak with my CF team before I have surgury but I have to have a colon resection done.. There is a huge portion of my colon that has been effected and now it is nothing more then useless area that is an easy source for infection. I am fine with the resection....though I am not thrilled about surgery my problem is this...

Every doctor across the board wants to do a hysterectomy on me as far as my fibroids go... They feel like it is the most practical thing to do because I have had surgery done before on my uterus and last time they were not even sure I could be able to hold a baby in my uterus...Last time they said I would always have to have a C_section because my uterus would rupture.... and that I would need help getting pregnant naturally....b ut they did leave my uterus last time and I had relief of my symptoms for I think almost 5 years..

Now fast forward a few years.. ,The fibroids came back. I can't pee and I have to use a straight cath method every time to clear my bladder of urine... The doctors want to do a hysterectomy... I just can't bring myself to do it... I know I can't stay like this forever, I know I probably can't sustain a babies life and I know that if I try to and the baby dies I will forever feel guilty and selfish for wanting what I want.

I know all the facts in my head.. If one more person tells me I can adopt I will burst into tears.. I am very well aware of all my options... as far as alternate means of having children.. that isn't what I am talking about.. I am talking about the horror thought and anxiety that comes to my mind when I think that I will never be able to know what it is like to carry a child inside of me.. How much it makes me FEEL like I am less then a women and that no man alive would want to be with me .. AGAIN how I FEEL not saying it is the truth for everyone..

I want a baby.. I want to know what having life inside of me feels like.. and I have to make a decision because I need surgery done soon.. I am out of work on disability and I want to et it taken care of now.., instead of going back to work and then taking another leave...

As I lay in this hospital bed, I am filled with anxiety at the thought of having somethign be so final for the rest of my life.. and so definite......

Emily (if you are reading this) I would love your input because you have walked down this road and seem to be okay with the way things are with you.. and anyone else.. please feel free to give input..

Before you do though please be sensitive because I am really hurting and sad over this..... and my emotions are really raw and I am on a lot of steroids....
and for those of you who don't know.. my whole life I always wanted to be pregnant when I was little I used to stuff pillows in my shirt and walk around so I looked pregnant... I used to dream of giving birth and being in labor...

I was once pregnant when I was in my very early 20s and I lost that baby because of a bad situation.... I miscarried........I can't bare to think that that was my one and only chance of having a pregnancy.....

Thanks for letting me vent,

 

[Emily65Roses]

You = smart. I was reading this and thinking I might be able to help. Mind you, I can't make the decision for you. But if you want to talk, share really personal garbage (you know me, you can't offend me), anything in your head, feel free to harass me any of the ways you know you can.

As for what to do. Like I said, I can't tell you. But let me share this with you: If I was able to get pregnant, I would. I'm a stubborn @ss. So really, having made that decision when I was 18, was a really smart decision, even though I didn't know it yet. Like I said, if I was able, I would, health or not, because I'm a stubborn @ss. So Allie and Mike have both expressed thanks that I had it done previously, because it spares my health without them having to talk me out of doing it myself. Haha.

I shall finish by repeating myself. You're the only one that can make this decision, and if you just want to talk it all out with me, hunt me down, I'd be glad to chit chat with you. I'll be totally honest how I felt/feel about it. You know me, no sparing details. PM, IM, whatever you like. Stalk away. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Abby]

Jennifer,

I can't offer any advice, just wanted to say that I'll keep you in my thoughts and prayers.

 

[lightNlife]

<div class="FTQUOTE"><begin quote><i> I was once pregnant when I was in my very early 20s and I
lost that baby because of a bad situation.... I miscarried........I
can't bare to think that that was my one and only chance of having
a pregnancy..... Thanks for letting me vent,</end quote></div><br>
<br>
I can relate to you on that aspect, as I have had a similar
experience. What was right for me is most likely very different
from what is right for you. I can also relate to the frustration of
people telling me that I could just adopt. I wanted to scream at
them that adoption isn't the point--it's about all the emotions and
thoughts and feelings that are wrapped up in being an adult with
CF.<br>
<br>
Please know that I will be praying for you as you weigh these
decisions that are heavy on your heart. I'm sorry that you have
expressed that these things make you feel like less of a
woman--that feeling is not uncommon.<br>
<br>
I hope you find peace with the road you decide to take, and that
you have access to tremendous emotional support.

 

[Lilith]

Jennifer, this is a subject I feel very passionate about, and I'm
going to try, try, TRY not to say anything to upset you.  If I
do, feel free to yell at me...<br>
<br>
I will come right out and admit that I am not a maternal woman at
all.  I'm not very patient with children.  When I was
younger though, I did think about having children and the impact it
may have on a future relationship with a man that I love.  I
wanted to feel normal, that I could have a child without any
problems.  Then I learned of all the complications and such,
and the impact it would have on me if I dared to try.  It was
especially hard during one of my sex ed. classes, when one of our
teachers who was pregnant went on and on about how wonderful it was
to have a life inside her.<br>
<br>
It made me angry for a while.<br>
<br>
However, the longer I stewed on the subject, the more I came to
realize that pregnancy only lasts nine months.  That's it.
 And it wasn't worth it to me to take such a huge risk, for
myself and a potential child, for that short amount of time.
 If I actually made it through the pregnancy without a huge
health decline, who's to say I wouldn't die in labor and never get
to see my child anyway?  Meanwhile depriving my lover of that
much more time with me?  At the same time, who's to say the
baby wouldn't also die?  See, I wanted to have a child for
selfish reasons.  I wanted one to give to my fiance so that
when I passed on, he could still have a part of me.<br>
<br>
Truth be told, after I talked to him about it, he didn't want a
child.  At least not for those reasons.  He doesn't want
to endanger my life and/or the baby's just for the sake of being
pregnant.<br>
<br>
My point, I suppose, is this.  Not all men want a baby, and
just because you can't carry one <b>does not</b> make you less of a
woman, so I wouldn't let that stew on your mind for too long.
 The bigger picture is <b>your health</b>.  If having the
hysterectomy will save you a lot of pain and suffering, I would
take care of yourself first before worrying about the future.
 I understand a lot of women want to be pregnant.  I am
certainly not one of them, but I can understand to a certain degree
as to why it would be important to you.  But if you don't have
your health, you can't expect to carry a child.  And I have a
feeling that if you choose to have a child by other means, once you
hold that baby in your arms, most of what you're feeling now won't
even matter.<br>
<br>
Sorry if I rambled on too long, and that I can't give better advice
than that.  I will be thinking of you.

 

[Emily65Roses]

I just thought I'd add:
The logical part of our brains know uteruslessness doesn't make us lesser women. But it's still a natural and "normal" (given the possible circumstances) reaction.

I've had that argument more than once with Mike, and he always tells me I'm being an idiot, that I'm just as much of a woman as I was when I was 17 (the year before I had my hysterectomy), and that he doesn't care.

But like I said, it's a natural, albeit unreasonable, response to having your "womanly" parts removed.

 

[NoExcuses]

.

 

[Emily65Roses]

This I repeat just for Jennifer's sake. I really do hope you will harass me via IM or PM and spill at me. I will tell you exactly what I thought and still think, no matter what it sounds like, because I know you'll appreciate the truth.

Anyways, I just wanted you to know... I didn't say "stalk me" to be nice (not that anyone would assume I said anything just to be nice... ahahahaha). I said it hoping sincerely that you would indeed contact me. So there you are. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Landy]

Jennifer,
I feel for you & for the tough, tough position you are in.
I will be praying for you, for peace of mind for the decision you are about to make.
You've had a rough patch lately, to say the least...hang in there. We're all thinking about you and wanting a speedy, healthy recovery for you.

 

[JennifersHope]

You guys are so amazing to me that I am sitting here crying my eyes out with gratitude that so many ppl took time to answer me so honestly..... I am going home tomorrow for a short while.. I have to get cleared for surgery and stuff like that.. and My CF team is going to evaluate me to see exactly what they think I need done as well. I have to schedule the surgery not sure when it is going to be but soon...

Emily since I am in the hospital, I can't tap into AOL or Yahoo it is a system security thing but I will be home tomorrow and will for sure want to talk to you.
and will turn on my aol as soon as I get home.. Probably more in the evening becuase I have a lot to do before going home

I have to use a foley cath at home but since I have cleared the infection I can go home to regroup and come back for surgery. They want to take 8 inches of my colon and intestines and also the uterus as well ..< They said I will be in for at least a few weeks again based on my bodies ability to heal or lack there of.

I have received so much love and support from this site.. Actually tonight I had a room full of doctors and RT's and nurses just hanging out with me for hours.. I have such great friends and we were reading some of your responses and talking. They are so amazed that I Have such a great support system. I am blown away really and truly.. everyone is so nice to me all the time I just don't get it...


Even though no one can really make the decision for me, knowing that I am so understood and supported helps me so much.. I am dead tired now and I am going to go to sleep for a while but when I wake up I am going to reread the posts and also my PMS and respond to each of you because I am so blessed that you all took so much time to talk to me..

Thanks again and again and again...

Love and Gratitude

Jennifer

 

[Momtana]

Listen to yourself very carefully before making a decision.

 

[Giggles]

I am so sorry you have to go through all this. I think you have to come to terms about not being able to carry a child and it does NOT make you less of a woman at all!!!!!!!!!!!!!!!!!!!!!!!!!! I can not have children cause of my CF and will never carry a child but I in no way feel less of a woman. You are 100% woman and no one can take that away from you even if you can not carry a child. You are going through such rough times now and it is probably so hard to make any decisions. But, think how much more comfortable you will be and your health will improve and that is the most important. You need to do what needs to get done so you can feel better, get out of the hospital, get your CF to your baseline and move on with your life and live your life to the fullest. No one can take away your womanhood.Be strong and stand tall!!!!!

I am praying for you!

Jennifer 34 years old with CF and CFRD

 

[katyf13]

Jen- I am thinking of you.

 

[Scarlett81]

I am thinking of you alot today, praying you will stay strong. I am so happy to hear you have such a great care team-those nurses and doctors sound awesome! That is such a blessing!
As everyone said-this doesn't take away any aspect of your womanhood. There's plenty of women out there that have had the organ to have a child, but not the brain, and definately not the love. If you decided to be a mom-you have everything you need in that beautiful heart, and strong mind to be so. But before all that, you have to get back to your life. Get healthy again. And soon, you'll be able to start living to the full again. I have a feeling that the future has alot in store for you!

 

[Marcy]

Jennifer-My Twin-My friend,<br>
I just read your post, I am sooo sorry you have to go through all
of this! I know you know this, but I am always here for you!
Just a phone call away.<br>
I so totally understand your post. And if this helps at all,
 time heals.  I am proof.  I had a horrible,
horrible time when I was unable to conceive (3 yrs of
trying&nbsp<img src="i/expressions/face-icon-small-wink.gif" border="0">, then when we decided we would not even move forward
with invetro after my CF diagnosis I was devisitated.  But I
knew that this was the right decision as we didnt want to risk my
health.  God totally has a plan,even when he leaves
prayers unanswered. You will look back and realize later what his
plan was.<br>
Love ya, my friend!!!<br>
Marcy

 

[Debi]

I am glad you are improving enough to go home, gather your thoughts, then go back for the surgery. That's certainly an upstat from where you were just a week ago. I am sorry you are facing surgery, and even sorrier that you have to make such a big decision. I'm not going to give you any advice or any platitudes. But I will share my own experience for whatever that's worth. I grew up knowing that I wanted 6 children. 4 boys, 2 girls. Knew the names and everything. Loved it when I got bloated during my periods because it gave me a minor hint of what my stomach would look like in the early stages of pregnancy. Got married. Used birth control for a number or years until we both got our silliness and world travels out of the way. Vividly remember the first time we had unprotected sex (back then there was no AIDS, so unprotected just meant no BC). CF wasn't a consideration because I didn't even know I had CF then. Our hearts were in our throats because we were so sure we'd get pregnant immediately and sure hoped we were ready. Didn't get pregnant. Eventually went through fertility stuff. Still no pregnancy. Went through all the heartbreak, feelings of inadequacy, etc. Husband thought it was no big deal. Now, at 54, I remember that I one time wanted all that, but the feelings of sadness and loss really did go away after about a year or so. We did end up adopting, two amazing children. But even if we hadn't, I know I would have still had a wonderful, enriching life.

I don't want to trivialize the emotional pain, because it is real. I just wanted you to know that at least one person survived it just fine. My husband and I will celebrate our 31st wedding anniversary on Wednesday, so I also want you to know that losing your uterus need not shut off the possibility of wonderful relationships. My husband said to tell you that a man with confidence will marry YOU, not your body parts. He send hugs and best wishes. He is the one who just finished his nursing degree at the end of July and we tracked your journey because it was so parallel to his.

Please be good to yourself. I vote for living in the here and now, not worrying about what have been if only.... You need to get well. You have so much to offer this world, and you cannot do it in pain or being a recurring patient. I wish you well as you face this difficult decision, and you know that we will support you no matter what you decide. Bless you!

Debi
54 w/cf

 

[JennifersHope]

Hi Guys,

I am just home from the hospital it has been such a long day and I am so drained. It is so good to be home and away from beeping machines and IVs and it is nice to know that no one is going to walk through my door at any moment and tell me anything else about my body or my health or decisions I need to make or anything .. I think I must have taken a half hour shower.... (My first in 23 days) Uck I know.

I am going to see my CF team on Thursday.. I can't wait because I feel like they will take care of me.... and get things straightened out for me...Things are up in the air as far as the colon resection..They feel that a lot of this delayed healing head to do with DIOS which apparently is a common thing amoung CFers.so that made the diviticulitis so much worse... I am waiting for my CF doctors input... THe hysterectomy isn't something that he is going to be able to help me with but I am still going to get input from the social worker.

I guess in my heart I feel like it is not even possible for me to have a child, and after reading so many of your responses. (many of them PM's) I really feel like I need to put my health first and also, a lot of good points were brought up about if I actually was to give birth....

One of my closest friends, more like family is getting ready to go on a cruise for a week, but when she gets back, we are going to sit down an discuss it....and by then I will have had all my feedback from the doctors...

Tomorrow I have to set up six doctor appointments and that thought is overwhelming.... but anyway...

Emily if you are reading this.. I can't sign up to my AOL for some reason.. I have to redown load the whole program.. which I am going to do either later or tomorrow. I can't tell if I am tired or depressed or what...

I have to say that I am dumbfounded by the amount of compassion that you guys have shown toward me and all your input is so valuable..No one had to be so honest with me or share your personal story but I am so glad you did..I know that no matter what happens I will be okay because not being okay doesn't work for me....

3 and half weeks is to long to be in the hospital and I am looking forward to getting some strength back and starting to resume life again...

I still want to address so many of your wonderful stories and situations that you shared with me but I am so tiredddddddddddddddddddd.......

I have sincere gratitude for you guys and having this website makes my life situations so much easier.

Love,

Jennifer

 

[kayleesgrandma]

Jennifer, I'm sorry that I just read you rpost tonite. What a decision you have to make! Like the others said, listen to your inner voice--that sixth sense that knows what's best for you--it's hard to let your heart guide you. I just want to say that if you think that there is a possibility that you wouln't be able to carry a baby full-term, it would devestate you to lose it. Above all else, your health is most important--you have so many in your life who care for you, and you are such a careing person. As a woman, I know why you feel as you do, and I ache for you. This is not fair, but I know you will make the rlight decision. Remember we are all here for you--whatever you decide. I wish I could give you a hug! <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

It sounds like you already know what the right answer is. Not only for your own health, but for your future. You just need a little reassurance and I think we can all agree by saying that you are doing the right thing. Go ahead and have the surgery. It is the right thing to do for every single reason out there.

It is not an easy thing to do emotionally, but it is the right thing to do. It sounds like you have known this was probably going to come for some time now, so it will give you some closure and I bet you actually feel some emotional relief once it is done. That may sound weird, but I really do think you will feel better (both physically and emotionally) once it is done. It will no longer be weighing on your mind.

You are a good person and I am sorry you have to go through this.

 

[blindhearted]

Jennifer,
I'm glad ur home. I know what a relief it is to be home after being in the hospital for so long. (that was the best shower you've had in months, I'm sure) I really dont have any advise for you because I have not been in either of your situations. The only thing I can think of is that I would talk to my CF team (doctors & social worker....maybe even an OB/GYN that deals with a lot of CF cases for additional information) and see what all my options are and what the outcome for each option would be as far as the hysterectomy goes. Write things down, go home and just weigh your options and see which one is most beneficial to your health overall. I know it's a hard decision for you and I will be praying for you.