Coping with life

[MightyBoosh]

Hi,

I hope it's ok for me to post on here - I don't have Crohn's myself but my boyfriend, (well ex-boyfriend by 1 week) does. We both love each other very much but he's been feeling unwell for quite a long time now. He sometimes has stomach pain but mostly is extremely knackered all of the time. (In the past he has been very ill on a few occasions, with awful stomach pains, lost lots of weight and been stuck in bed). He's been anaemic for quite a while but even though he's been put on iron tablets it's not really been helping him. We still speak to each other and I absolutely love him to bits but he has said that because of how he's feeling he doesn't feel he could be a good father to children, or give enough attention to them as he would want to be able to do. I've always seen myself as having children and he said I shouldnt have to make a choice between him and children, so he very selflessly moved out.

I didn't want him to leave and don't know what I want anymore in life. I would still like children in an ideal world, but then if I can't have them with him I'm not actually sure I want them. It's him I love, not any other person I run in to that might want children too!

I was just wondering if there's still hope for him to actually feel any better and be able to have a more 'normal' life, including actually being able to go to work and go out sometimes without feeling exhausted.

I'm sorry if this is the wrong place to post this. I can't understand what it feels like to have Crohns and hope you don't all think 'oh just stop moaning, you're well and can get on with your life, it's your boyfriend that needs the support'. I respect everyone of you that has Crohns; if I'm intruding on your forum then no worries, just remove my post, and I'm sorry.

Thanks for listening.

 

[Crohn's 35]

You have come to the right place! You are very much welcome and the rest of the crew here will agree!!! Bless you for taking the time to seek information and help from us Crohnies! He is going through alot right now, it is embarrassing to most men and they dont know where their paths could lead. He is sparing you from a great deal of pain and anguish and I am not surprise he did what he did. This disease is very unpredictable and some people end up on alot of drugs, which is why I only had one child because after my dx my daughter was 4, my Gi said I wouldnt recommend you have children for a while because you are going to be on alot of drugs. That is NOT to say they same will be for him. Treatment is very hard to find what "works" for him, we all have different severities and pain. Some bleed, some dont. Take your time to read about the disease and everyone is here to help you! There are others who are here to support their loved ones, and I am grateful you are trying to understand, most people don't. Please ask all the questions you want, no matter what , everyone here is a straight shooter. Bless you!

 

[beth]

:welcome:

 

[CrohnieCarolyn]

You sound so supportive - something I didn't have from my ex - who left when I was finally diagnosed - he couldn't handle being with a "sickie" Has your boyfriend been to a GI? If not he needs to have a firm diagnosis and then a treatment plan - most now are on immunosuppressant drugs that can do wonders - ask him if his doctors have suggested these drugs...Remicade is the most popular one and has helped A LOT of people deal with the severe symptoms of Crohns - hang in there and welcome

 

[My Butt Hurts]

Hey MB - you are very welcome to post here. Congrats to you for trying to find a way to support your ex (hopefully not and ex for long). It is very possible that he will be able to live a semi normal life once he finds the right treatment. Even at my sickest, though my husband had to do a lot of the cooking cleaning and stuff with the kids, I could still snuggle with them and read to them on the couch. Kids are very resiliant, I wouldn't write them off completely. I am feeling VERY good right now - there is hope for your bf. Maybe he would like to join the forum too, or at least have a look around. There is a TON of great info here.
Welcome again!

 

[fenway1971]

Welcome!
Time for a boys point of view. This disease is hard...gives us ups and downs. And, stress contributes to symptoms. Sometimes, we don't want the added pressure of feeling like we have to do something we dont want to. Sounds to me that he's leaving the door open for you though. Share with him your feelings if you haven't already.

 

[imisspopcorn]

Welcome
I'm glad you posted. We always like it when significant others post. I'm sorry your boyfriend is feeling so much despair at the moment. The physical pain and exhaustion can get the better of most people. Your in a difficult position. I wonder if he could benefit from being a part of this forum? Maybe mention it to him? There are a lot of kind and caring people here who share their struggles and joys. Also he might gain some info that would help him in his treatment of this disease.

There is always hope. Most of us have been in his position and have made it through. Please let us know how things go.

 

[MightyBoosh]

Thanks very much for your replies and the warm welcome I'll try and give you a bit more information about how he's been getting on.

We had been together for just over 8 years, and he was healthy when we first met. A few months afterwards he became quite ill, initially thinking it was the flu or something but this carried on for a few weeks so he went to the doctors. The diagnosis came a few months later, but yes he does have a diagnosis of Crohns and has done for quite a while now. I'm now 27 and he's 29.

Over the course of the last 8 years he's not always been really ill, though has had particularly bad flare ups on a couple of occasions. At one time he lost so much weight he was struggling to move around and I've seen him in so much pain at times with his stomach that he literally screams out - and he's got such a high pain threshold so when that happens I know it much be awful. For the past couple of years he's had a few times where he's felt worse, but generally it's like he's always lethargic and doesn't feel like doing much except sitting still on the computer, or watching something on the tv.

He isnt one to talk or moan about how he's feeling - I think not wanting to worry me, though from my point of view I would prefer him to tell me, even if its' just "I feel crap" or something. But I know everyone deals with things differently, and that he's trying to protect me, even when he's feeling awful.

He was managing to work a few years ago, continuing to hold down a full time job but he's not been able to work for about 2 years or more now. I find it really difficult to work out if this is because he's absolutely exhausted and couldn't hack it, or if he's depressed. It's probably a combination of both.

Does anybody know if it's quite likely that as you get older, hence have had Crohns for longer, that you are likely to feel worse, or do symptoms go up and down for people throughout life? I know it's different for everybody so there might not really be an answer to that question. Also has anyone out there found that being very aenemic (?sp) is what has made them so tired and that the Crohns actually hasn't been their main cause of the problem at that time? (though will have been contributing to the tiredness).

At the moment he's taking iron tables for aenemia (?sp) and he's on methotrexate for his Crohns. I think the consultant mentioned Remicade last time we went, but as an option for the future if this methotrexate doesn't work.

Sorry for the long post. If I've missed out any other information that would be useful or you've got any questions or suggestions it'd be appreciated.

 

[shazamataz]

Hi there,

For one thing he is a very lucky fellow to have you!

I can't say whether this gets worse and the fatigue gets worse as I've only officially had Crohns for 3 months. I have been fatigued for years though and don;t know if this is because i had a degree of Crohns all that time or that the Chronic Fatigue has lead to the Crohns. Depression is also common in this disease so he could perhaps get that looked at. Maybe some antidepressants would be helpful for him and that would also help with his energy levels.

Hope he can get sorted

sharon

 

[beth]

I find the day after taking the methotrexate dose is far far worse than my disease. I just get back to normal and have a good day where I seem to actually be able to think and do stuff and generally be a human being again. And then it's back to the mtx. It's enough to make anyone depressed. Allegedly you are supposed to get used to it over time, but of course Life isn't always that easy.

Anemia will also make him feel tired. If he can try the shot's instead in case his Crohn's is affecting the absorbtion, and may as well go for B12 too!