Colon&rectum removed- fertility worries (still)

[littlefreebird]

colon&rectum removed- fertility worries (still)

panproctocolectomy and ileostomy surgery was in July.

....this is actually driving me mad, you might think i'm crazy as i'm only 21 (22 next month).
i have ALWAYS wanted children young, it was always in my 'plan'.
If it had not been for my flare ups over the past 2 years prior to surgery i may have even had children by now.
I'm NOT in a rush at all, i'm just very anxious about what the surgery may have done as this is the most important thing to me.
prior to surgery i had a lot of perianal involvement, a lot of swelling and a recto-vaginal fistula.
i have read all sorts of info that has totally freaked me out:
- removing the rectum can cause uterus to tilt.
- fallopian tubes may be damaged during surgery.

if anything was damged during surgery would my surgeon definatley have told me? would he perhaps not know if he did?
my surgeon barely told me anything about how the surgey went.
I don't think i'm going to be seeing him again.
when i was first told i needed surgery the first thing i asked was can i still have children and how important it was to me, i was given a vague answer of, "well you have no chance of having kids with how bad you are at the minute....and you're young so i wouldn't worry."
i was not told about any potential risks of the surgery at all.

i'm just so anxious, it seems to be all i can think about.

i don't even know if i can get checked out now before we start trying or if i have to wait until i'm trying to conceive for at least a year without success.
i don't want my GP to think i'm wasting resources or being young and ignorant.
i'm worried about my mental health until my mind is put at ease...i have a history of depression, i don't think its coming back or anything but i can be easily fixated on an idea and get quite obsessive etc.

gosh, i sound mad. i'm constantly reading this back and trying to make myself sound a little more sane.
i'm so grateful for how well i am now, and i have a good life- i should be happy, but having children means everything to me. my other half says we can start trying at the end of summer as we were advised to let my body heal for at least a year, think i may go nuts before then though!!!:runaway:

 

[SdN]

freebird I'm a man so I'm sorry that I can't offer much advice on your concerns. Something I do want to say though is to be very careful with worrying so much about something. Now that you have this disease you really should try to take life 1 day at a time. I know from personal experience that constant worrying can and will eventually wear you down and before you realize it you're having panic attacks or experiencing anxiety. I know saying that makes you only worry even more but just try to be thankful for what you have and appreciative of anything extra you get along the way

I wish you the best of luck in trying to have children and I truly hope it everything works out for the best.

 

[Susan2]

This is a serious question. You need to ask your doctor or specialist whether or not it is too soon after your operation for them to do a check of your reproductive organs. Then you need some procedure (something like an MRI or even a physical exam by a gynechologist) that will show you clearly the effects of the surgery and the subsequent healing.

I don't want to frighten you, but I had a proctocolectomy and didn't realise how much effect the scarring had had until I went for my next pap smear. The gynecologist was most surprised to find that my uterus now points towards my left shoulder blade.

You will quite possibly find that you are perfectly able to have children and others will probably come on and re-assure you about this. Mine was quite an extreme operation. My rectum and anus were very badly affected by the Crohns, so I had to have a large amount of flesh cut away.

But, if I were you, I would want to know one way or the other, then you can get on with your life.

I am well beyond childbearing age so it didn't matter for me and I can treat it as a joke every time it comes up, as it just did on the report from an MRI that I had recently on my lower back. I can just imagine the radiologist doing this :ywow:

 

[Nyx]

I'd get an appointment with a gynecologist and have a workup with them. They''ll be able to tell you what's going on and put your mind at ease. Even if you can't conceive on your own, there are other options for having children (egg harvesting and surrogacy, adoption) that you can consider. Sorry this is plaguing you!! Hopefully you can get checked out and put your mind at ease soon. Hugs

 

[stardreamer22]

Awww...how miserable. First - try not to worry!! You have some time before you're "healthy enough" to start trying to get pregnant. Also, you want to be sure you're clearly in remission before getting pregnant. If you conceive during a flare your changes of having a tough time during your entire pregnancy is much high as is the risk of miscarriage.

Second - I also recommend that you see an OB/GYN as soon as you can to get some feedback as to your current health situation, recommendations for pregnancy and what steps you have to accomplish before your ready. But at least then you can put your mind to some ease. Good or bad, at least you'll know.

Although I can't speak to your specific situation as I haven't had similar surgery, I have had 2 healthy pregnancies with Crohn's. I have a rectovaginal fistula that resulted in me having to have c-sections. I would work with a doctor long before you actually get pregnant though. I had the full blessing of my GI and OB/GYN before each pregnancy.

Sending good thoughts your way!! Hang in there!

 

[Tay]

Littlefreebird - it may be worth asking your GP to refer you to see your surgeon for a private consultation. This would cost around £100 but you will have the time to ask ALL the questions you have. Your treatment and follow up would continue as normal on the NHS. I know you shouldn't have to but the NHS isn't what it was!

I am a bloke but have had a very similar clinical picture as you have - good luck

 

[Terriernut]

I think you have every right to feel the way you do. But, a year after your surgery, when everything is all healed up, ask for a referral to a specialist. You can always get a good exam to make sure everything is ok. If you do have trouble conceiving, which I doubt, then you can get some help with it.

But I have to ask, have all your periods become normal now? Took mine a good 5 months to get back, but they did. And I had a fistula through my fallopian tube.

You should be ok I think, but I can see why you are worried! Dont think worst case scenario! Not yet!

 

[littlefreebird]

thankyou everyone for your feedback.
i'm going to book an appointment with my GP soon, she sometimes isn't very helpful but hopefully she can help me or refer me on to a gyn dr.
i'm quite annoyed that i was never told about potential risks regarding fertility or anything else for that matter before my surgery.

i'm in 100% remission- i have not had a single tummy complaint since my op so thats not a worry anymore at least.

the crohn's was at it's worst at the rectum and anus....he did say that it fell apart as he was removing it.

Don't get me wrong, i am thankful everyday that i am alive and now not in pain- i'm so grateful. i'm just ready to put it all behind me and focus on my dreams, i just hope they're possible.

thanks everyone x

 

[Snap]

Hey there! Sorry your mind is so heavy with this. I do know that successful pregnancies are possible following a surgery like ours, just not sure how extensive yours was. I would for sure get an appt with a gynecologist--take your operative report with you so that Dr. can see exactly what was done. Easier said than done--but try not to worry so much---don't borrow trouble! Take little steps--get your appt first, then go from there. Hugs and prayers sent your way!:hug: Dana

 

[kossy]

I understand your feeling as having children as 'part of your plan.' My wife and I have been going on about five years now with fertility treatments. At first, we thought the reason was primarly from all the drugs and surgeries I've had over the course of many many years. Sadly, this isn't wasn't the case. My "swimmers" were/are in tip top shape. I say sadly because I would rather have the burden placed on my shoulders then having my wife feel that it's all her problem. I can't tell you how much that tears me up inside.
Going through a billion fertility treatments, research, and so on I can offer some advise. For the female body to be able to support a baby is actaully very complicated with all the hormone levels and a lot of other things. Sadly, any trama to the body (surgeries, illness, medications) can throw your bodies chemistry off balance and it may take a while for your body to adjust. Mental stress plays a huge role in it too, the brain can be a bastard sometimes. Try to find things that help you relax.
If your menstrual cycle isn't what it should be I would suggest talking to your GP or Gyno first about what can be done to regulate without the use of birth control. I can't tell you how many of thousands of dollars we've spend on pharmicutical drugs to acommplish this with subpar results. The one that has actaully worked is some kind of chineese herb tea my wife drinks.. if anyone wants to know the name of it let me know, I'll have to ask my wife.
In America you're not offical dx as infertial until about a 9-12 months, and most doctors won't even talk to you or address the issue until then. I'm not sure if it's the same across the pond.
Best of luck to you!

Also, I would adivce everyone please send possitive magical baby dust littlefreebirds way!

 

[Rl_gardner]

I had the exact surgery 8wks ago. I already have a little girl but was warned that I may have problems. 2yrs go I had septacmia which was in my pelvis so they are not sure if that has done an damage. Before my recent surgery my surgeon advised my that this particular operation can affect the process of eggs coming own the fallopian tubes which is different to being infertile. There is every chance I could get pregnant naturally or we may need some assistance I hope to update you in 6months time
I was also told I will have to gave c section.
There are so many options out there now.

 

[Terriernut]

I dont know why, but I think LFB is going to be fine. I think about 2 years from now she will be wondering why she was scared.

This particular thread made me remember when I was in hospital in Nov 2010. They had ostomates come and speak to folks who were facing the surgery. One of the girls who came along was a beautiful young woman, I think her name was Helen or Helene??? Anyway, she had a baby and a toddler. 5 years previously she had the exact same surgery as you. She had no issue conceiving, but did admit to C section for delivery. She was speaking to a young lady across from me who had the same worries. I remember it well because I ended up keeping the baby and toddler occupied while mum was busy. But bless her for helping folks to prepare for surgery. She helped that other young woman, just by bringing her children along for proof. On her own time.

LFB...dont worry please. With all the love in your heart, and your graciousness, I am sure that you will be blessed when the time comes.

 

[littlefreebird]

gosh, i'm tearing up :'( so emotional at the min.
i'm phoning the surgeon tomo, might need to be referred by my GP to him again, but i just feel i need to ask a few more questions to put my mind at ease.

luckily my menstrual cycle is normal for the first time in my life, i've been keeping a record since my surgery and its the exact same length each month which is good news.

and thanks kossy, babydust to you and your wife!!

thanks everyone!
hannah.x

 

[Rl_gardner]

Your gp might be able to help you first anyway good luck x

 

[Fozzybaer]

Fozzybaer

 

[ameslouise]

Hi LFB - Just wanted to chime in and say I'm thinking of you. Try to take it one day at a time and not fret too much. As we all know too well, sometimes life throws you curve balls and you have to be openminded. For many of us, our life-plans were derailed by disease and surgery, etc. I hope your plan can stay on track and you are someday blessed with the children you desire. You are so young yet. Give your body a little while to rest, try not to stress, and things, hopefully, will be fine.

Fingers crossed for you! Good luck with any upcoming appts.

- Amy

 

[Fozzybaer]

Hi...new to this kind of thing, but I need some opinions. I have crohns since probably 04, started out with some I.B.S. I'm on Pantasa and Budesonide and they are not working that well my Doc thinks I should do Humira or have the surgery.
I was wondering if anybody has had good reaction to the Humira??? I am leaning to do that and hope for the best.
I have had 2 flares since Aug because I tried to do some of the things on this diet called Breaking the Vicious Cycle, I do think diet has a lot to do with this disease, staying away from diary has made a lot of difference and sugar.Thanks for lessening,
I have learned a lot just by reading some of your post, and feeling for you all.....

 

[giftedbyadoption]

panproctocolectomy and ileostomy surgery was in July.

....this is actually driving me mad, you might think i'm crazy as i'm only 21 (22 next month).
i have ALWAYS wanted children young, it was always in my 'plan'.
If it had not been for my flare ups over the past 2 years prior to surgery i may have even had children by now.
I'm NOT in a rush at all, i'm just very anxious about what the surgery may have done as this is the most important thing to me.
prior to surgery i had a lot of perianal involvement, a lot of swelling and a recto-vaginal fistula.
i have read all sorts of info that has totally freaked me out:
- removing the rectum can cause uterus to tilt.
- fallopian tubes may be damaged during surgery.

if anything was damged during surgery would my surgeon definatley have told me? would he perhaps not know if he did?
my surgeon barely told me anything about how the surgey went.
I don't think i'm going to be seeing him again.
when i was first told i needed surgery the first thing i asked was can i still have children and how important it was to me, i was given a vague answer of, "well you have no chance of having kids with how bad you are at the minute....and you're young so i wouldn't worry."
i was not told about any potential risks of the surgery at all.

i'm just so anxious, it seems to be all i can think about.

i don't even know if i can get checked out now before we start trying or if i have to wait until i'm trying to conceive for at least a year without success.
i don't want my GP to think i'm wasting resources or being young and ignorant.
i'm worried about my mental health until my mind is put at ease...i have a history of depression, i don't think its coming back or anything but i can be easily fixated on an idea and get quite obsessive etc.

gosh, i sound mad. i'm constantly reading this back and trying to make myself sound a little more sane.
i'm so grateful for how well i am now, and i have a good life- i should be happy, but having children means everything to me. my other half says we can start trying at the end of summer as we were advised to let my body heal for at least a year, think i may go nuts before then though!!!:runaway:

So sorry sweetie as a mom who lost a baby when I was 5 months along and a mom who had to have a hysterectomy at the YOUNG age of 26 years old. I HEAR and feel your pain. Its awful and I am so sorry you are going through this. I did get to have one bio-son I was married 2.5 years all ready when he was born and I was 21, thank god we did early or we wouldnt have him either BUT I am writing this because there is LIGHT even when the tunnel seems dark look at my profile see that gorgeous little one with the long dark hair!!! He is our angel we adopted in 2003 Chance.... our second chance so all that being said I know its hard but there is always other options and its a WONDERFUL WONDERFUL thing being a adoptive parent awesome feeling that I cant even describe keep the faith and dont give up!! :ghug:

 

[littlefreebird]

thankyou everyone for your kind words they are much appreciated, feel a lot better.
i guess i never thought of all the options that i have, i wasn't looking at the bigger picture.

thanks everyone- you're all stars!!!