to feel as though I've lost something I've never had?

[Gudgyx]

Hi everyone :) first time poster in AIBU, long time lurker!

This may be better suited to relationships, but I know it will get more traffic in here and I need to just get it out. Bear with me, this might be long.

I joined MN about 6 months ago, as my partner and I had decided to start trying for a baby. We have been together 4 years, live together, and are extremely happy and content. We are honestly best friends, and I love him more than anything. We have no immediate plans to get married, but will one day. I am 27, he is 29.

Only downside to things is that my health is not great. I was diagnosed with severe fistulating Crohn's Disease just before we got together, and because of this, I now suffer from rheumatoid arthritis. Over the past year, this has gotten a lot worse. I have developed 4 recto-vaginal fistulae, which I have seton sutures in, and 1 bowel to bladder fistula, which has resulted in me having to wear incontinence pads for the past year. I wake up about 4 or 5 times a night for the toilet. I go to the toilet up to 20 times a day, and take 100mg of tramadol 4x a day for help with pain.

I cant walk up or down stairs anymore. I get bad fatique, and cant go for days out etc because I get too tired. On a rare night out, I'm exhausted and in agony before about 11pm. I still work full time though, and wouldnt get through a day at work without my painkillers.

I am due to start a new medication in the next few weeks called Humira - a self injecting drug that is used for both CD and RA, and my consultant is hopeful this will change my quality of life completely. If it does, I'll be on it for life. If it doesnt, its bag time. And I'll just have to put up with the RA as I cant take anti-inflammatorys.

When we decided to start trying for a baby at the beginning, we knew I was ill, but I was nowhere near as bad as I am now. We also knew I would be starting Humira, and have high hopes for me getting back to normal (its safe to take while pregnant.)

Onto the actual topic of my post, we had a talk the other night and have now decided not to have children at all :( we think that, even if I do get a better quality of life with the Humira, there's nothing to say that will be permanent. I will always have CD, there is no cure for it. We dont think it would be fair for a child to have a mum so exhausted and ill constantly, as well as doped up out her face on strong painkillers. I dont want to be that mum that sits on a bench watching her kids play, or watching them play from the window because I cant join in. If I had a child right now, there is no way I would be able to cope. I know that for sure. Because of my fistulae, my consultant told me I would defo have to have a section, as my bits couldnt cope with a natural birth. Sex is painful as well because of them. Hopefully though, they will heal eventually.

There is always a chance as well that CD could be passed onto a child, and I couldnt forgive myself if I did that. It would just be so selfish of us to have a baby, and bring it into this world knowing that its future is so uncertain. I dont want any baby to have to end up my carer.

Before someone says it, I know people with CD who have had children, and cope ok. Or people who were diagnosed after having children. I just dont think I'm strong enough personally to cope with that.

I feel as if I have lost something :( I am so sad at the thought of never having children now. We will always have each other, and nephews/nieces in the future, but it wont be the same.

So yeah, AIBU to feel as though I've lost something I never actually had? Thanks if anyone has actually gotten this far, it has turned out mega long!!

Thanks everyone

Gudgyx in my darkest days I have said the same to my DP too, so no judgement here. I'd do almost anything to get shot of this stupid disease.

For what it's worth, once in remission, the awfulness of the bad days fades (or at least it has for me). I think our brains/memory protect us from the fear of relapse by making the memory of how bad it is fade away. When I think back across the last decade of my life my first and most lingering thoughts are of the good times, not the bad.

FoodSchmood One thing I wish is that I could remember what 'normal' feels like! I've had to adjust to a new 'normal' which would make even the strongest person reach for the phone to call in sick. I dont even have the energy in the morning before to brush my hair, couldnt tell you the last time I properly brushed, dried and straightened it. Azathioprine has made my hair fall out, so I tend to wear hair pieces or wigs a lot anyway.

Hopefully my next new 'normal' will be a lot more bearable. I only started on the 4 x 100mg tramadol today (was only taking it once a day before) I've took my first 2 (4 tablets) already, due another 2 at 3pm and just cant take them. I wont be able to drive home at 5pm! Been so spaced out all day I've barely done a thing, almost pain free though.

Oh sweetheart, of course YANBU. What a dreadful time of it you've had. and very best wishes. Really hope you feel better soon. Of course you can mourn what you've never had. You mourn your hopes and dreams. But it's such a blessing too to share life with a caring, supportive partner and that can be so underestimated. xxx

You have made a very brave decision. It is a truly soul destroying disease. I have two beautiful girls and live in fear if them getting it. I have had years of hell with it. I hope in time you will come to terms with it. I had never heard of it until I was diagnosed at 21. There needs to be more information out there for people.

Food I think it effectively killed the sperm, not sure of specifics but doctors said don't try conceive while he's on it. Might have been the dosage though.

HouseofEliot I'm so glad its starting to get more recognition now, probably because of that model showing her colostomy bag to the world. I think a lot of people are embarrassed to talk about it, because its primarily related to poop! Hopefully though, in ten years time, it'll be openly spoken about everywhere.

Thanks for today everyone, you have really helped me cope a little bit better :) xxx

My mum had an autoimmune arthritis thing, Sjoegren's syndrome. She first developed it when she was 25 or 26 when I was just a baby, so I don't remember her without it. She couldn't come with us if we went on a long walk or even play with us in the park. I grew up acting as her carer. And she was the best mother anyone could ever wish for, I wouldn't ever ever have swapped her for the world. She was perfect.

So please please don't worry about that aspect of having children, if you do decide to revisit your decision. They will love you and not begrudge anything. My mum died when I was 32 and I'd rather have had those 32 years with her as my mum than 64 years with anyone else.

YNBU either.

Aw Carmine what a lovely, but heartbreaking, story. Your mum sounds lovely. xx

Just thinking actually, I dont have to leave mumsnet now I'm not going to be a mum do I :(

There are plenty of other people on here that aren't parents. After all you don't have to be a mum to comment on The Archers threads or talk about camping or The Litter Tray etc.

There are loads of really great things about not being a parent. But I know its hard to hold onto those when you're pining for a different life.

YANBU to feel how you do. What a hard discussion to have and decision to reach. You have to do what feels right for you and your dp but also to remember the decision isn't cast in stone and could be changed if you feel differently in future.

My dd has ulcerative colitis and arthritis and is on azathioprine and wants to TTC. She's worried and so am I about how things will go for her and if she does go on to have dc, how she will cope as she's so tired at the best of times. I suppose the biggest difference between UC and CD is that in theory with UC if you have your colon removed then you have cured the disease. I know with crohns that wouldn't be the case. Bowel disease is so horrible. My heart breaks for my dd and for everyone else who has to suffer with it.

And of course you can stay on MN! There are people on here who don't have DC and some, like me have grown ones but still love the site for information, support, entertainment and advice. Take good care of yourself and be kind to yourself.