I don't want this life

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Hi everyone, thanks for the concern.

I'm doing okay, I went back to Bournemouth for a few days (where I go to University) just to be with my housemates etc for the last week of term. It was nice to see them but pretty horrible at the same time, so I'm not really sure if it did me any good or not. I needed to get away from home but the disruption seems to have set me back a bit, I feel like I've felt worse this weekend than I did earlier in the week. I'm glad I did it though.

I think I'm probably going to my GP soon for something to help me sleep. Previously I was getting to sleep fine but not staying asleep for very long. Now I seem to be struggling to get to sleep too. This has been going on for about 7 weeks, I really need something strong enough to get me to sleep and KEEP me asleep, but I don't want to become drug-dependant...

Things also aren't being helped by my confusing symptoms (or lack thereof) – I mean I have symptoms - I can still feel inflammation in my rectum (and having an MRI of my pelvis on Wednesday to see what, if anything, is causing all these weird sensation problems in the groin area), and I feel weak/fatigued, legs are still weak despite having been out and about walking on them a lot for the past fortnight – so I know there is still active disease going on inside. And yet my bowel movements are pretty much one a day, unformed but solid, and are completely blood/mucus free now (have been for a couple of weeks) – plus no pain, nausea or gas – most Crohnies would kill for this?! It just makes no sense and makes surgery even harder to accept because I’m not presenting the typical symptoms. How is a colon, so bad that it needs to come out, producing these stools? Weird. I think if it weren’t for the rectum stuff (and the problems I think are stemming from it), I would have no idea I was in a flare now if I hadn’t been scoped. I’d just be confused as to why I had no energy. Going down to 20mg of Pred tomorrow too (down from 25) so all hell could break loose… although the improvements I’ve seen have been since I started tapering. Also weird. I don't know what's going on, my body is just strange...
 
Hey Ian

So pleased you posted again and so pleased you've been out and about :)
Good luck with the MRI scan, let us know how you get on. Keeping my fingers crossed for you huni and hoping you get postive answers :)

Take care and take it easy.

Big hugs

Paula
x
 
Hi Ian and thanks for the update!

Please let us know how the MRI goes.

I know you have struggled with needing to have your colon removed, yet feeling so good and producing decent stools, no pain there, etc. I would feel the same way!!!

Glad that you have been able to taper successfully off the pred so far. I hope the rest of the taper goes as well.

You're never far from my thoughts, I'll keep rooting for you!

xo - Ames
 
Thanks for the update Ian, just wanting you to know that you are in my thoughts and prayers. Good luck with the MRI.

Please keep us posted.

Hugs
 
Hiya Ian

so happy to hear from you, also glad you're out and about.
I think if this was my son I would be questioning the docs about surgery too, but also remember that Pred can mask symptoms and give the feeling of well being, time will tell when you're completely off Pred and whether symptoms return.
Good luck with the scan and get your bloods, electrolytes, thyroid and B12 checked too.
Everyone is still rooting for you Ian!
xxxx
 
Great to hear from you Ian!
We've all been wondering how you are doing.
Keep on keeping on...one foot in front of the other.
Thanks so much for coming in and posting today! :)

Hugs~Nancy
 
Hi Ian

Only today I read your thread... Allow me to join and say hang in there. I certainly know how at times it just feels like the end of the line.

I can so relate to a lot of what you describe, especially in regards to how these complications may end up affecting your sexual functions... It is quite a taboo among the doctors I've visited, and there have been many. It's like they don't acknowledge the possibility. Well I have developed a very complex set of fistulae in the last few years, and am unable to do Infliximab or Humira at the moment. I've been witnessing my whole perianal area get worse and worse for the last year, to the point that yes, it's affecting me sexually. It has taken huge amounts of energy and a long talk with a special doctor in order to start coping with this prospect... But I am also discovering a lot about sexuality, how it is not all about mechanics.

My anal area is now a maze of setons, imagine how it felt to face intimacy for the first time once they started placing them in there... and I am single and have been single for a while, partly because often I don't have the strength to go out and reach out. But guess what - what you see is what you get. I have had sexual contact various times after this nightmare started, and even received a few compliments. I think these setbacks have ironically made me a better lover, more caring and thoughtful.

So one never knows... no path is a straight line. Hang in there, keep the faith, stay on top of things... it will be ok. Big hug.
 
Hey Ian , Please try stay positive, i was in a really dark place about 3 weeks ago, was in hospital for the 3rd time this year with flare up. Managed to get C-Dif whilst i was in there, That lead to my potassium being critically low (thought i was going to have a cardiac arrest) also had o have a blood transfusion this year. I havn't worked for 6 months now, Never felt so useless in my whole life , was in Hospital for 2 weeks then getting out i was basically bed ridden for a futher week as i just had no strengh. I really just thought it would be easier if i just wasn't here anymore. But it has got better , i've been out of hospital for about 3 weeks and i seem to be ok at the moment , i am on antidepressents and anxiety meds and although i don't think tablets are the answer to everything they really do help me, ive also been refered by my GP to Mental Health Services so i have someone to talk to. I really hope things improve for you, 24 is far too young to have so many worries.
Big Hugs :)
 
Hi Ian! It been a while, but you have been on my mind. I hope you are on the up and up. Hugs to you sweetie! :)
 
Hi Ian
Any news sweetheart?
We haven't forgotten you, please take a few minutes to check in :)
Marie xx
 
Ian, my husband had similar symptoms several years ago and it ended up being transverse myelitis. Did they do an MRI of yor spine as well?
 
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Ian,

Wow! It certainly sounds like you've had an extremely rough time of it lately. I am so sorry to come back to read this. I hope things are working out for you. Take care of yourself.
 
I don't know man, I'm going through it tonight too. Be as strong as you can in this life. I like to think we're preparing for something we're only get if we fight to stay alive and positive. Even through we die of anything at anytime. It only makes sense to me. Don't look at it like it'll only get worst because that's how you will feel when fear kicks in. Fear will only lead to fearing the worst. Keep talking because I hear about ppl and I knew one, one being my older brother that went through a situation that you think you can't handle and don't seek help and end up killing them self.
I found out I had Colitis two weeks after my brother died. I almost ended up like him. Everybody wonder how he could do it because of the person he was but I knew why afterwards. He couldn't workout the way he knew how to and more.

Me being in the position that I'm in now and having to put up with a neighbor about something that involves why I'm like this now, made me so pissed tonight I couldn't stand my life anymore. Just try to take care of yourself the best you can like most people would do for their kids.

I'm going out to get some stuff to get back into lifting weights. Try to find something you good at and keep your mind on that when you're not feeling good.
And don't be like me with only one friend I can talk to, get a bunch!

I can't lie I feel still feel like crap after writing this but it'll go away 'if I let it'.
And don't worried about not being able to be there with your friends with school, we all fend for our self in this world.
I still feel like crap...
 
Hi, Ian! I've been thinking about you. I hope you're feeling better. Please know that you are loved and cared for by us Crohnies at the forum.
 
Hi Ian, just checking in to see that you are doing alright. Keep your hopes and will strong, you will be through these trials sooner hopefully than later. Please let me know if you ever need an ear. Things can and will get better, just look how much cuter Ames gets with each new pic!! :thumleft:
 
Trust me Ian, Jerman knows,he has been in your shoes but alot worse scenerio... hope everyone remembers that just because you have a bad flare or rough go doesnt mean your journey is always that way. :hug:
 
Thank you, everyone.

I’m not doing well at all, which is why I’ve avoided posting – I don’t like to tell people that when they’re showing so much concern and support. I’m sick of making people feel helpless. Everyone is growing tired because my feelings and attitude don’t waver, no matter what they say. Every conversation is the same. Maybe most people wouldn’t get stuck like this, but unfortunately it’s just who I am and what I'm like.

The MRI of my pelvis didn't show anything, which I knew it wouldn't.
Currently down to 15mg of Pred and generally feeling worse.

I won’t go into it all again and repeat myself because it doesn’t help me or anyone else, but I wanted to acknowledge your posts and say thanks for the support. I’m sorry I don’t have better news.
 
Does you GP know you are feeling like this?.... because it sounds like you could with some chemical help.

((hugs offered))
 
Hey hun, thanks for checking in. That is not good news about the MRI and totally understand if you don't want to go over it all again. Can't help but think and wonder about you though when you're not around, but don't want to give you any added pressure. Want to say more, but am new to Pred and it is starting to mess with my head, so I will just say :hang: :ghug::hug:
 
Ian, when my husband had similar symptoms his lesions were from t3-t7. That would not show up on a pelvic MRI. The treatment was high doses of solumedrol, so it concerns me that they are dropping your pred and it's making things worse. Please ask your docs to investigate further.

It is easy to feel like every symptom must have to do with your main illness, but it could be something else entirely and I hate to see you have residual issues because of something that could have been treated promptly. This could be something that will get better with the proper treatment!
 
Ian, This is only my second day on this forum, but from just reading the responses you have gotten, you have touched many, many lives. I believe that a person knows his/her body better than anyone else, however, I also believe in faith and hope. I'm glad you are being honest (for years I was in denial) and that by being honest, you will find the strength to somehow get through this. You are in my thoughts and prayers. Please keep us posted.
 
sherry3535 said:
Hi Ian,
I just wanted to let you know that i am thinking of you alot, and finally figured i would reply to this post so that you would know that i am!
Please try to keep your head up and know that we all care about you deeply! I look forward to an update fom you soon!
Sherry
Click to expand...

Ditto, Ian! I wonder a lot how you are doing and getting on and I am happy for you when I see small improvements from the first (and very dark) posting. My thoughts are with you and I wish you the best in your uphill journey! :thumright:

Heike
 
Hi Ian! I just wanted to check in with you. It sounds as though things are looking up. There are many of us pushing for you. You'll make it!
 
Hi Ian,
I'm a little late to the show, but I still wanted to let you know I'm thinking of you. I do know how you feel. Sometimes I get so depressed I feel like I might as well just give up and let this disease swallow me up. It's so easy to feel that way. But everything will get better. I can personally promise you that. I just hope it's sooner rather than later. There are so many things I could say to you right now, but you've probably heard it all.
I think you're very good looking, smart, positive and just an all around good guy. There's so many people on here who clearly care about you, and I just joined the Ian club :D

Feel better! You deserve so much more than this.
:hug:
 
Hey Ian,

It's been a couple of months since you first spoke of needing surgery. Is this still going ahead or has the Humira settled things to the point that it is no longer necessary at this point?

I so hope it is the latter. Thinking of you mate and hoping this finds you in a better place than you have been.

Love and hugs, :hug:
Dusty. xxxxxxxx
 
Hi Ian,

I hope things are improving for you and just know we're all here for you :ghug:
Pop in and let us know you're okay when you get the chance
 
Hi Ian

You show green 24/7 which means you're online, so please reply to our messages and let us know you're ok
Thanks
xxx
 
Thanks everyone for the kind messages and support. Sorry for the lack of responses, things have just been very samey for a long time now so I often have nothing to say/report that I haven’t already said (I’m boring even myself!).

Dusty, it’s more the latter than the former - surgery isn’t immanent because my symptoms appeared to improve (no D, no blood, can gain/maintain weight), and I seem to have stabilised there for now (we’ll see what happens when I’m off the Pred but there’s been no negative change in 2 months and I’m only at 5mg now). So no one is urging or pushing me to do anything just yet, but since there’s still active disease I feel generally weak/tired and fragile so I don’t feel like I can just carry on as normal until things get worse, kind of in limbo!

I’m doing better but I have to say that this probably isn’t as good as it sounds – it’s a result of me being able to distance myself from it (a sort of ‘well it’s not happening tomorrow’ mentality’), rather than me becoming more accepting of it. It’s certainly easier for me (and everyone else) to be this way, but I’m not sure it’s gonna be very good for the long run, I’m just burying my head in the sand really. Seems to help me physically though; I said last time I was generally feeling worse, but I think that was due to stress/anxiety because feel much better when I’m calmer and more relaxed.

Thanks again everyone, you’re all too kind!
 
Hi Ian - Glad to hear things have stabilized physically and you're out of the immediate danger zone.

Hopefully the emotional stuff will follow and you can wrap your head around things as you start to feel better.

Thanks for posting - take care!!

- Ames
 
Thank you for updating, Ian. :)

Glad to hear things are improving for you. You deserve a break from all the stress that was going on. I think it is natural for you to take on a bit of a head in the sand mentality. It's a way of coping. You are right, it's not the best way to stay, but you are aware of that and I think that's a good sign. It's one day at a time. ;) Deal with what you've got in front of you and worry about tomorrow another day!
 
Ian, everyone has said so much, and they are all right, and even though we have delt with our own issues, this is happening to you. From my first major resectioning- I made a decision - NOT to be defined by this condition - or by all the negative things it can throw at you, I define my life not it- even when its at its worst. Head up! And refuse to loose! Does it suck? Sure? ...Is it always easy? No ... But you decide who controls who, time for you to decide your in control. Sure there will be down times, but make them the exception not the rule! God Bless
 
Thanks for updating us Ian and I'm glad to hear that things have stabilsed a bit for you :)

I understand how you remain cheesed off but be kind to yourself, take one day at a time and try to find 1 positive thing about each day, however small that may seem, and don't forget that you can say what you like here :ghug:
 
So no one is urging or pushing me to do anything just yet, but since there’s still active disease I feel generally weak/tired and fragile so I don’t feel like I can just carry on as normal until things get worse, kind of in limbo!

I don't get this Ian!
You sound like you're in awesome remission there, and there's many a folk on here who would give their eye teeth to be in that position.
I'm sorry for this, I'm gonna be blunt
Stop projecting and stop seeing things that aren't there yet!
Talk to your Mum, go to the GP with her, get some anti depressants and get out and see your mates
Life is for living, you're a long time dead, see your GP

I'm sorry if that's offended anyone
 
Hi Ian, glad to see you posting again!
Right..the POSITIVES...Your flare seem's to be under better control than it was previously, the immediate threat of surgery has subsided, your down to 5mg of Pred (woohoo).
Negatives..you may well need surgery one day, it's what all of us with darn disease fear, be it a resection or colectomy. It just comes with the territory. That may happen next month, next year or years down the line yet. Please don't waste good days waiting for this to happen. I know it's hard, I've been there...I DIDN'T want to loose my colon, but it has given me back a quality of life that I had lost. Weigh up the good v bad, I'm sure you'll be surprised at how many good thing's you have going for you right now.
If you're feeling good, get some work done for uni. I realise that it may be too late for this year, but prepare yourself to go back and finish it next year. Make plans...don't let this disease rob you of everything. It is only a small part of our lives and make up...

I don't mean to be hard. I just don't want you giving up when right now it seems everything seems to be heading in the right direction for you.

And xx
 
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Thanks for saying it, Joan and Andrea. Sometimes we all need reminding and a little kick in the pants. Ian, I hope you take their words to heart and start living again.

- Ames
 
I agree that it is good to stay positive, and I generally do, but there have been times when I just couldn't get my head around this disease too. We all deal with this in our own way.

Ian, thanks for checking in. I hope you can get to a good place mentally soon. Please take everyones advice to heart and try your best to find a way to feel better about all of this, and if that takes going on medication or seeing a therapist so be it! I also think that it might do you some good for you to find a Crohns support group, or even someone with an ostomy so that you can see that you are not the only one dealing with this stuff, and that you are not the only one who has to suffer. It is sometimes inspiring to meet someone else who has this disease, and see that they are still living their lives, and often perfectly happy despite whatever it is they are going through.

I hope you are feeling better mentally soon. i promise that it will help you physically too!
 
I don't know if this is helpful or not, but when I was going through a misery spiral, my husband and I decided that it had to end, one way or another. So, I gave myself one more day to feel bad for myself, and said to myself and my husband, "I get one day, so leave me alone and let me feel this, and tomorrow this is over." So, the next day I got up and made a conscious effort to be grateful for what I had and not focus on what I was losing. Day by day, this got easier and easier to do. I had ostomy leaks in the airport, on vacation, at work, but I just cleaned myself up and learned how better to care for my ostomy, and learned to just take it in stride. After a while, it became no big deal. Really. And that is how I deal with all of the ups and downs with this disease now.

You can choose how you are going to feel about your life, and after I almost died last year, I chose to think of every day that I get to be with the people I love on this earth a blessing, even if I have embarrassments or even pain, I know that I am lucky to get to be on this planet with them. I hope that you can learn to do this too!

I look at people like Joan, Amy, and Andrea, and so many more people on here, and I know we have all watched each other go through times when it was hard for us to acept our lots in life, but I see them now, and I am so proud of them for coming through and not letting this disease get them down.

I think it is easy to think that everyone who doesn't have Crohns has it so easy, but it really isn't true. Everyone has had to deal with something in their lives be it physical illness, mental illness, abuse, or something else, we all have our cross to bear, but it is how we deal with our situations that define us.

I'm not trying to be judgmental and say that it is easy to just feel better about everything, or that I have always been able to do it quickly and without tears, and sometimes yelling, but it is always important to try your best to be happy and live your life the best way that you can with what you have, and I hope you can find a way to do it too. Any way, we are all thinking of you and hoping that you can find your way through this somehow.
 
I just went back and re-read some of this and I think what Jet said sums it all up:

"I understand how you remain cheesed off but be kind to yourself, take one day at a time and try to find 1 positive thing about each day, however small that may seem, and don't forget that you can say what you like here."
 
Thanks Nicole, turn round and look back on how far you've come too!
Love you for it!
And I love your photo too, gorgeous gal!
xxx
 
Glad to hear from you Ian.

You know what, if the best way for you to cope is to stick your head in the sand and say "tomorrow"- then go for it!! We all have times when that is the only way to get us through.

My nerver are shot after a CT scan, the results I may or may not get Wednesday. I've been sleeping alot and burying my head in the sand to get me through :)
 
you know, 8 months ago i was in your exact situation. everything was the same. now after 2 months of treatment in austrlia and im 1000 times better. take a few months off, get your diet right, go see numerous gastroentorologists and find one who is good, and get yourself into hospital and stay there if it means youll improve. good luck bro!
 
Ya know, we all disappear into a "funk" once in awile - some for longer than others. I myself am coming out of one after surgery in January - set me back emotionally a lot harder than I thought it would/should...... My psycholtherapist said to me once "Just be happy - choose to be happy!" I have to admit, at the time I thought she was on glue - how can one just CHOOSE to be happy?!?!?!

But I think, maybe, I think I finally got it.... maybe you can't exactly choose to be happy - but if you are depressed - especially for long periods of time - you CAN choose to do something about that.... sometimes it takes help - maybe medication - maybe councelling - .....

However, you can also choose to remain in the emotional state you are - and worry yourself into an early grave - are you " the glass is half full or half empty" kind of person? Do you choose to look at life as something worth living? Or are you the tiype of person to say "We start dying the day we are born, so why bother?" .....

All the good hopes and wishes in the world aren't going to bring you out of your funk, Ian - YOU have to be the one to choose..... and we all do hope you make the choice we would like to see.......

Astra101 said:
"Life is for living"

Abso bloody Lutely!
Click to expand...

Love it.....now you just gotta be the one to decide and choose HOW you are going to live it......
 

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