Keep fighting. But feel like quitting.

[Fighter]

I'll keep this short so I don't bore you all with the same schpeel.

Diagnosed in March 2008 with crohns. Been on various meds, namely pred, asacol and budes on/off. My biggest concern is the length of time I've been on pred, avg 10mg per day over that time, certainly last 24months.

Tried aza a couple of times last summer, screwed me over so stopped that. Was off work for 7weeks. Increase pred ended up helping me a little and making things more comfortable.

Tried 6-mp recently, twice just for safe measure. Low dose still messed me up can't stay on pred any longer so am looking at injections, possibly inflixi as its bimonthly hospital visit once loading has been done (or so the doctor said).

So the issues?

- since I lost 3 stone when diagnosed and then being unwell often I quite frankly don't like myself anymore.

-psychologically it's messed me about. I'm fed up of no real remission since diagnosis. Mentally I'm drained. Physically I'm drained.

- I smoke. And I smoke the occasional weed (too occasional at the moment!). Not great or helping I know but in some respects it does help ease the discomfort. In the other 101 respects I know I'm bloody stupid and it's doing far more harm.

- I feel bad for my girlfriend of 6yrs. She's great. I'm not. And I'm not the person I used to be physically (pretty sure she don't look at me so much in that way). Mentally I'm still me, but just the crohns brings you down. She's supportive but I feel guilty we can't do more together and that I have these episodes.

- I have a family that really care and worry. And I don't like them worrying. I'm the oldest of the 'kids' for my parents but the one they worry most about. I don't like that. And I don't like being a burden.

- its limiting me in so many respects everything I wanted to achieve feels to very very far at the moment. Although I have a successful career in central London, I'm often worrying how long before they get pissed with me. They are great and I manage to juggle most of the balls all of the time but again, I'm just not achieving what I could have achieved.

With all this worry, not being the person I once was and few dreams to aim for at the moment, I wonder if I'm being selfish putting my family and gf through all of this worry and stress. The gf is too proud to leave me, and the family will never stop worrying unless I'm better or there is no need to worry. And getting better seems like the other distant dream.

I lied when I said I'd keep this short. So I won't go on any longer. The reason for the post.....to say what I can't say to anyone who knows me.

All the best with your own individual fights.....

 

[David]

Hi Fighter and welcome! I'm so glad you joined! First off, you are not a burden to those who love you (click that).

Seriously man, things CAN and WILL get better. Infliximab is an outstanding drug and chances are it's going to change your life. But you chose your username for a reason. There's a part of you that is ready to really fight. And that's outstanding. My suggestion in addition to the Infliximab is to nuke your Crohn's from orbit. Hit it from all angles. As such, I strongly suggest you research enteral nutrition as well. Since you're a fighter, you can probably stick to it in which case it has remission rates on par with Prednisone.

In addition, if you haven't, get your vitamin D, vitamin B12, and folate levels tested pronto. If you have had them tested, what were your levels? I ask because people with Crohn's Disease are commonly deficient and proper supplementation can make an enormous different physically, mentally, and emotionally.

Now the smoking. The weed? Well, that's probably helping you so don't beat yourself up there. But the normal smoking? Yeah dude, it's time to quit that. It absolutely causes issues with Crohn's Disease.

We're here for you bud. It's going to get better. Stick with us and we'll fight alongside you. And let me tell you, I have a mean kick to the balls if anyone gets in your way.

 

[PsychoJane]

Hello and a warm welcome!

Seriously, I don't think I could write anything better than what David just said. Just keep in mind you are not alone! I've felt that way and things will get better! I just got out of a 2 years vicious cycle and, I'll knock on wood, I think I'm out of it.

Stop smoking cigarettes and hang in there! You will find your way to remission!
Good luck!

 

[Angrybird]

Hello and welcome to the forum :hug: I can only agree with what has already been said, we are here for you hun!! Will be keeping fingers crossed that you can soon get into remission.

AB
xx

Oh and yes do stop the ciggies

 

[Chimpur]

I totally get where your whole not the same person. I think I'm in remission myself; but I'm tapering down on the pred (20mg now?) and I can feel the changes. It's tough. I'm physically better because I take pills; but those same pills have such soul gutting effects. Again; it's tough. But I think you gotta dig deep and pull that resolve to keep fighting. And do it for yourself. Not just to do well by your gf or to ease your families pain.

 

[em6263]

Hey Fighter.

I'm a mess myself and unfortunately can't offer any real advice. Just wanted to let you know you're not alone - I'm feeling the exact same way in terms of the guilt, the burden on my (amazingly) supportive boyfriend and family, job stress, and the like.

This is so hard. But please don't quit. The people here have been a tremendous help to me, as I'm sure they will be for you as well. I'm thankful that you have a great support system in your girlfriend and family. I know it's easier said than done, but please try not to feel guilty about that. You're not "putting them" through anything; this is just something extremely unfortunate that is happrning and is by no means your fault. They're helping you because they love you and want you to get better. And you will.

Take care,
Em

 

[cecilialynn]

hello i agree with everyone on here. It is hard to deal but its what we do. I am going through the same thing as you. I feel like the boyfriend is here because of guilt ,and my parents have been soo helpful .Im the second oldest and they have been helping me out in so many ways even finacially. I have lost my job my home and now live with the boyfriend. I feel pretty useless and my days are nothing more than running to the bathroom. I do know where you are coming from. I smoke dope to help me ,calm my guts helps me sleep gives me a appitite etc. I also smoke a bit at this time but i've been diagonised with UC. Not sure if it will help or not. All i know is as soon as i tend to quit smoking cigs my illness returns. Everyone on this site has valuable life lessons to help us get through our day. Good luck ,keep your chin up.

 

[dare651]

I know that having this condition is very very hard. But don't give up. You may feel down once in a while but it's totally normal. It's just how we cope with it. You could join various support groups or participate in forums like this. Just venting out like what you've done here could even help.

 

[Fighter]

Thanks for the words and advice.

This year has been the worst. We all have to deal with it and i'm far from the worse case on here so appreciate what others are going through. For me its just been a snowball. being unwell and suffering at the start of the year, grandad was in hospital. Mid feb things went bad and I was running between London and my hometown (few hrs drive) almost every day. Wore me down. I was there alone with him when he passed and it was a difficult pill to stomach. Tore the family up and all I could do was brave face and say he was fine. Then a few weeks back a friend in mma went to bed and didn't wake up. This was a friend I grew up with. Gone.

Those extenuating factors are still very fresh in the mind and with everything going on life just doesn't seem right. Or fair. I know it isn't, but the reality can be pretty harsh.

We all know that......

I'll save my woes until I'm in a better place, hopefully. In my head, i still cant deal with this at the moment. But thanks for listening/reading.

 

[carrollco]

:ghug:

I spent one year in the worst flare imaginable. I was miserable; sure I was a 'burden' to my family, friends, co-workers. I was on 6mp, it slammed my liver and kidneys. Pred makes me loopy, who wants to clean the shower with a toothbrush? Just when I felt ready to give up, the Humira kicked in.

Am I perfect? No. Am I the person I was before Crohn's? No. I now have empathy for those that suffer with chronic illness', I have more compassion for myself and my body. Sometimes I get depressed when my family is out playing and I'm suffering from a flare (you still get them--they just don't last as long.) Eventually the flare goes away and I'm back on my feet.

You haven't tried the 'big guns' as my doctor puts it. So hang in there. Your life may just be around the corner. In the meantime, you have us. :soledance:

I wanted to add that this last flare was caused by the emotional upheaval of learning that my brother is critically ill. Losing people you love is so hard to go through. You never forget, but you do learn to live with the loss. My prayers are with you.