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!!

[Coughle]

Of course yanbu. You have lost more at a young age than many people lose over their whole lives - your health, independence, and now the chance to have a baby. You have suffered greatly. I'm very sorry for what you're going through. Give yourself time and space to grieve for this loss... It is very real and you have every right to be disappointed.

[SnakeyMcBadass]

No, not U at all :( I'm so sorry that things are so tough for you. You are allowed to be sad, and grieve. I really hope the new meds help.

[cricketpitch]

I am so sorry to hear this OP. I think that you are incredibly brave. Whether you have made the right decision only you know - no-one else can comment. You have decided to do what is best for you and your partner.

Of course you are sad, that's understandable. (Having kids is not always what you expect though). Focus on your wonderful partner and your life as it is. And good luck with the new drug.

[AMumInScotland]

Of course YANBU. You have lost something - the possibility of a child, and it's ok to be sad, and even grieve for that. It's ok to be sad about that even if it's a conscious decision and not infertility that is the cause. Through things that you can't change, you are having to deal with not having something that you probably always assumed would be in your future.

[Gudgyx]

Yeah its something I just always kind of assumed I would have in my life, so its making me very sad having made the decision I wont be doing it now.

I was watching OBEM last night, and when I watched it previously I watched it with the view that one day it would be us doing it. Imagining how my partner would react seeing the baby being born, imagining how I would cope with the birth, imagining if we would have a boy or a girl and what we would call him/her. Would he/she have my turned up nose, my partners blue eyes, our blonde hair or our siblings red hair?

Now I'm watching it just thinking meh. Think thats when our decision really hit me, its horrible.

[Gudgyx]

Thank you as well for your kind words :) I dont know what responses I expected on here, I just wanted to talk about it. But you are all very kind and I appreciate it.

I would just like to put out there as well, that my partner is absolutely wonderful with all of this. I dont think many people could have coped as well as he has. My sex drive has dropped dramatically as well with all the medication and surgery, and he hasnt complained once about anything. He has also said he is preparing himself mentally to be my carer in future as well if needs be.

Defo won a watch there, he is a diamond

[AMumInScotland]

Just give yourself space to feel this way. It's a real thing, and a perfectly 'valid' set of emotions for the situation (of course all emotions are real and valid!). And even when you think you've accepted it, it could still pop out at you at unexpected moments.

You've gone through a lot, and accepted that the diagnosis is something that's going to be with you for life, even if they can improve your symptoms. But accepting that it affects 'unrelated' parts of your life is a big step.

[FayeKorgasm]

I'm so sorry you are having to make this decision as well as continuing to manage such a hideous disease.

I can't offer any words of wisdom, but I can offer a hand to hold - metaphorically.

Best wishes moving forward.

[ohfourfoxache]

Oh sweetheart yanbu at all

Please, please, if you come across anyone who tries to say yabu please ignore them - I can honestly say that it will be them, it will not be you.

Give yourself some time - as much as you need

[magimedi]

So sorry to hear about your illness & your decision not to have a child.

I am sure you feel very sad & YANBU at all.

May I say that you come over as a lovely, thoughtful person & I am so happy to hear that your OH is the same.

[Lottapianos]

Hi Gudgyx, I can partly relate to your situation as we have decided not to have children for various reasons. Part of me feels very strongly that this is a good decision for us, but part of me feels very sad about it. I think its true that you're grieving the loss of a future that you had imagined for yourself. It takes time and is very painful. Allow yourself to feel whatever comes up for you.

If you think it would help, there is a wonderful website called Gateway Women for women who are not mothers, for all sorts of reasons. People tend to think about women who don't have children as either 'didn't want' or 'couldn't have' but the reality is loads more complicated for many of us. I have found it really supportive. You can post on there or just read what other people have written and it can help to see that other people out there share your feelings. Not having children can feel very lonely at times and it may help to spend time online with others who are in the same situation.

I'm so sorry for everything you're having to cope with

[EarthWindFire]

So sorry to hear all this OP. I totally get where you are coming from though as I felt the same when we decided to stop TTC.

[immortalwife]

Hi gudgyx

My partner has CD. He has had surgery to save his life 6 yes ago and is looking at more surgery now if the new medication doesn't work out(methotrexate).

We had a baby in sept 2013. He says its been the hardest year of his life. He also wouldn't have missed it for the world. He is sad that he can't do everything "well" people do with their kids but knows that just loving our DD is enough.
He says an ileostomy is on the cards probably in the next ten years or so, which will change his life completely for the better.

All I will say is, wait and see. We thought we wouldn't have children as he was on azathioprine, but the doctor brought him off it so we could TTC at dp's request. He's going back on anti-biotal drugs so I don't know if I will ever have another.

Take some time to digest your decision. Let it just rest, and allow yourself to grieve. But also don't allow yourself to rule out your future.

Gudgyx, you're a true crohn's warrior and I salute your bravery!

[Igggi]

Do you feel it's better for you emotionally to make this decision, rather than, say, deciding not to think about it for 5 years?
I do hope you feel a bit better with the new treatment. Not the same issues as you, but my mil takes humira for RA and it has been a massive help to her.

[FoodSchmood]

Hi Gudgyx.

You're me - or rather, me 4 years ago. I also have enteropathic arthritis, though i'm incredibly lucky to have very very mild crohn's with more severe arthritis... I was diagnosed in my early twenties, following a severe arthritis flare that left me barely able to walk/function. Despite this I was determined to have kids and in my late twenties we started to actively try and get into a position where we could have them. Back then humira wasn't recommended in pregnancy/breastfeeing and due to the only drugs that worked on me being unsafe in pregnancy my only option was to come off all medication, wait six months for the drugs to clear my system, then try. We did this for about 5 years, dosages going up and down as my health wobbled back and forth, and we got within 2 weeks of being clear of the meds twice before relapsing, very very severely (at my worst I couldn't wash myself, dress myself, brush my hair etc etc). We eventually decided to give up. My health couldn't take it, my eyes were starting to be affected (iritis) and the heartbreak of getting so close and then relapsing again and again was having a really bad effect on my mental health. So we stopped. We decided to be child free and focus on the good in our lives. We'd been worrying about how we'd cope with a baby/active toddler if I had a flare up anyway and this just felt like the right decision.

By chance I changed rheumatologist (my health is primarily managed by them as my crohn's is controlled by meds completely and I haven't any fistulas touch wood!) and the new one was surprised when I mentioned giving up on the idea of having kids. She switched me to humira and azathioprine (i'd always been on methotrexate before that. Sometimes in combination with humira, which worked to control the disease moderately well, but left me with severe fatigue). Within 2 weeks I had my life back. The disease went into complete and total remission. I started getting exercise again and slowly built my sad and weak body back up. I have permanent damage in some joints, but you would never know it to look at me. I got back to playing squash, gardening and within 6 months was in the best shape of my life.

So after a lot of soul searching and talking about we'd cope if I did flare up with a baby/toddler in tow (there are respite/support services available, plus we ensured we had some savings in case my partner needed to take a leave of absence to take over for a while) we decided to give it one last go, except this time I could stay on my meds.

6 years after we first decided to try and start a family I was pregnant and I now have a happy, healthy and very active 2 year old! And I have maintained remission throughout, despite the 2 months without humira post c-section. I am still breastfeeding too. I am tired, not going to lie about that, but for me, having my son gives me the strength to cope with the exhaustion. At some point I will have another flare up, the odds aren't in my favour on that, but my partner and I will find a way to cope. DP can do the active stuff with DS for a while and I can do reading and puzzles and things you can do sitting down. It won't be forever and I have faith i'll find medication that will get it under control again.

I know the crohn's has a more severe effect in many ways, with all the fistulas etc and if you really are 100% that you can't do it, then that's fair enough and it's fine to feel sad and mourn your loss (because it is a loss). But what I would say it this; you don't have to decide now. Say you've decided not to have kids, for now. See how you feel once you are on the humira. You are only in your twenties, you have time to give it a year or two and see how you feel then. See if you achieve/maintain a solid remission. Enjoy time alone with your husband and do all the holidays/things that are hard to do with kids in tow! (Try to) stop thinking about kids, just put a date in the calendar in a year or twos time to rethink your decision and see if it's still right you for.

Also, for what it's worth, there are new drugs arriving all the time, there is a lot of money going into auto-immune disease and some real breakthroughs in treating/understanding it that could lead to a cure in our lifetimes I believe. That gives me hope that if/when I do relapse there will be new drugs to try and a medication that will work for me like the humira did before.

I hope this doesn't come across as patronising, I don't doubt this was a well thought through and hard to make decision, I just wanted to show that no decision has to be forever and things can change more than you might believe!

Whatever you decide to do, I wish you the very best of luck. Crohn's/arthritis is a shitty disease to have to live with and I sincerely hope you can achieve a remission and a break from the symptoms soon.

[immortalwife]

Food, you put things much better than I ever could :)

[Sapat]

I don't know, everyone is different. My SIL has a degenerative autoimmune disease that is also inherited. After much soul searching my brother and her have decided to go for a family now that her symptoms have stabilised and before they get worse again. They decided not to let worse case scenario scare them off and have faith in the future, and possible medical advances. There is diabetes and cancer in my family, their kids are just as likely to get that. My sister has just been diagnosed with breast cancer. She has a 3 year old and a 5 year old and is shitting herself. You never know in life. There is a mum at my school who I think had MS, is in a mobility scooter, very involved in the PTA. I saw her yesterday "walking" with her kids to the park, they were having a ball. I have been a carer, it is not all bad!
You are young, see how things go for a while. Good luck!

[Gudgyx]

Thanks all, so glad I posted in here now, the support here is second to none.

Lottapianos - Thank you, I will have a look at that website :) good to know it has been of help to you.

immortalwife - so sorry to hear about the difficulties your partner has had, it really is a horrible disease. I have also been taking azathioprine for about 6 months now and will continue taking this alongside the Humira, as they work well together. Great to hear you guys have managed to have your baby :) you must be so happy.

igggi - thats really reassuring to know that the Humira works well for your MILs RA. I have high hopes for it.

foodschmood - You are not coming across as patronising at all, thank you so much for your in depth reply. I'm so happy for you that everything has worked out, you're feeling better and enjoying your family. It gives me faith that Humira will work for me. It is seen as a kind of 'miracle drug', but Im trying not to get my hopes up too much in case it doesnt work. How long have you been on it now?

It has been a well thought out and discussed decision, that we feel is right for us. I also dont want my partner to have the pressure of maybe having to deal with a baby/toddler as well as having to be my carer. We just dont think the situation for either any one of us, or a child. Heartbreaking as it is, it is the right decision for us. We are just going to enjoy each other.

[FoodSchmood]

I had a few months on it in late 2008, early 2009 in combination with oral methotrexate, which actually made me more ill (had horrendous side effects). Looking back I think the methotrexate was just going straight through - my guts were awful then and methotrexate needs a long transit time to be absorbed, so I was effectively on just humira, which didn't work alone for me at all.

This time around i've been on it since Feb 2010, initially with injected methotrexate, then from Dec 2010 with the azathioprine. I am still stiff in the mornings, but that eases off quickly, especially with a hot shower first thing and I get mini flare ups, where I hurt for a few days in a few joints, but no big red swollen joints, no real loss of mobility and no spike in my bloods. I am incredibly lucky and am thankful every day for my continued health and ability to be the mum I want to be to my son.

When we weren't planning on kids we used to look for things we could do instead with the £200k-ish it allegedly costs to raise a child - my favourite plan was to buy a little boat (we live by the sea) for weekend/evening jaunts in the summer. I found finding good in the absence of children helped, rather than just imagining my life as it would be with kids, only with them not there, if that makes sense?

Also I made sure I still had children in my life (hard though that was) and made a big effort to be a good aunty to my niece/nephew and honourary aunty to my friends children. I love kids, always have done and didn't want to let the disease take away that part of who I was.

I hope that things feel easier for you in time, but don't let anyone tell you you haven't lost anything. It's OK to grieve and it's OK to be sad, hell, it would be weird not to! I'm glad your husband is so supportive, he sounds like a good 'un! I wish you a happy life together! :D

[FoodSchmood]

immortal I don't know if it's different for men (some drugs are) but I was on azathioprine throughout pregnancy and breastfeeding. It increases the chance of miscarriage in the first 3 months by a small amount, but an out of control immune system is a far bigger risk, so I didn't really worry about that tbh!

Methotrexate is a definite no no, so it's a shame he's trying that next, if you do want more children perhaps they could try humira (or another safe to conceive upon drug) instead?

Whatever he goes on next, I hope it works and he (and you!) can enjoy a break from the disease soon!

[Gudgyx]

I'm going to share something with you guys that I've often thought, but never said out loud because it sounds quite shocking and out of order.

I sometimes wish I had a type of cancer instead of crohn's disease :( see it sounds horrible.

My reasoning is that, with cancer, I would have a chance of fighting and beating it. With CD, no matter how hard I fight, I can't beat it and never will. It is always going to be there. It does have the potential to kill me, although it is an unlikely possibility. With cancer, I could fight my hardest, try and beat it, and if I didnt, at least all my suffering and pain would be over.

I'm a bad, horrible, selfish person :(

[akwardsazzle]

i've just read through this, i have no real knowledge of crohns or anything of the like, but i just wanted to say you are not a horrible, selfish person and I want to give you a hug x

[gobbin]

Gudgyx don't apologise for expressing how you feel. Crohns is a vile disease (I'm recovering after a resection and ileostomy).

You've made your decision after a lot of thought and soul-searching clearly. I really hope Humira works for you

Humira, Infliximab and Methotrexate have been life-changing for so many sufferers of Crohns and RA, I hope you'll get remission very soon and start to think about family plans again.

p.s. Infliximab closed my perianal fistula. I hope Humira gives you relief from these too xx

[ThatWasNice]

Oh, you poor bean, you are in a difficult and sad situation but you sound like you are being very sensible. You and your husband both sound lovely and really mature. I agree that you need to give yourself plenty of time and that you allow yourself to feel sorry for yourself from time to time.

My DBro and his late wife who had cystic fibrosis choose not to have kids at a similar age. They could have had kids and there are plenty of woman with CF who have kids but they felt it wasn't for them. They never regretted their decision but I know my SIL felt sad about it from time to time. I think making the decision was hard but once they had done it they seemed more relaxed. I think the uncertainty before was difficult for them and once they had made the decision they felt they could get on with life.

I hope I have explained that ok.

I hope everything works out for you and your DH

[greenhill]

Please don't be so hard on yourself Gudgyx you are living with daily pain and debility. I wish you well with your new meds. Don't give up yet, things could be looking up for you once your body is used to the new meds. Good luck.