I don't want this life

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Ian

Ian

Joined
Feb 9, 2010
Messages
352
Location
London, UK
My illness has forced me to abandon Uni and come home, where I've been for a month doing nothing. I will already miss my last year with my friends and won't graduate with them this year, if at all.

A week ago I found out it's likely that I'll need a perminant ileostomy. I've been in turmoil over this, especially because my typical Crohn's symptoms have been so minimal. I'm only getting a few hours sleep each night. I'm having anxiety attacks. My mum is on the brink of leaving her job because she feels she can't leave me on my own. It's destroying everyone. I considered it the end of my life and thought things couldn't get any worse. I was wrong.

So now I have to REALLY humiliate myself.
I haven't felt like myself in weeks, so I don't know when exactly this happened, but I've recently noticed I've lost a lot of sensation in the genital area. My penis is barely responsive to touch. I'm impotent. And now I'm frequently getting the sensation of needing to empty my bladder and having to pee even though there's hardly anything to pass. I feel numb; all I can feel is pressure from my highly inflamed rectum... and this is the conclusion I've come to:

I think the inflammation in my rectum has caused nerve damage. It's situated near the prostate gland so this would make sense. I've never heard of this happening before but that's what it feels like. I think we're contacting the hospital today but I'm terrified. I'm so humiliated by my body. My emotions are shot to hell. Having people examine me is going to push me over the edge. I don't want to get admitted because I don't think I can handle being separated from my family. The doctors will draw up a huge list of possible reasons for my symptoms. Stess, fatigue, drug side effects etc. But I know it's not any of those things. I can FEEL what's happened to me. I'm broken and they won't be able to fix it.

Several weeks ago I was a normal, happy student close to graduating and pursuing a career in television. I'm now, at 24, facing life with an ileostomy, maybe a urostomy (or at least bladder control issues), and erectile dysfunction. I don't know how I got here. It doesn't seem real. My family are in bits. We're all completely lost. I know people will say I'm jumping the gun, but I feel like this is it for me.

I just don't want to be alive anymore. And trust me, I'm a sensible, rational person. I don't think things like this and can't believe it's actually me typing this up right now. I don't have suicidal tendencies, but I don't know how I can be expected to go on if this is going to be my life. I just want to go to sleep and not have to wake up, and I'm terrified of saying as much in front of hospital staff...

I just don't know what to do. I know no one will be able to say anything to help, but I felt I needed to explain all of this before I go to hospital as I have no idea what they're going to do with me and how long I'll be gone for. I'm so sorry for unloading this on everyone. You're all such wonderful, supportive people and I imagine this is going to make some of you feel very helpless, like my family do. Like I do. I don't know what else to say.
 
Dear Ian: I don't know what to say, either, but I want to send support and encouragement your way, and to your family as well. You are strong - this is clear from how well you have articulated your thoughts as a member of this forum - and you do have the courage to keep waking up each morning. If you need to take things minute by minute instead of day by day, and keep deciding each minute that you'll get through the next minute, too...then that's what you'll do.
 
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Hey Ian - I just wanted to let you know that I am thinking of you. I have bladder issues on filling and voiding, Crohns, Gyno issues, plus many others. Each year I get another disease or something, I swear my body is trying to kill me - that's what I think some of the time anyway. One thing that I have learnt is that with multiple chronic conditions and possible surgery there are down times in the mind. Over the years I have been on a continuous journey of coping, sometimes with medication. I have been reading your posts and appreciate the way you write so honestly about what is happening for you. So thank you for being you and now I am sending positive vibes and postiive support your way.:rosette1::rosette1::rosette1:
 
I just wanted to say, "Thank you," for helping me to feel welcome at the forum. I'm sorry that you are going through such a rough time. "I don't want this life," I have thought that many times. Prayers and wishes that you begin to feel better soon my friend.
 
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Ian
This has broken my heart.
Please do not have such dark thoughts because the world is a much better place with you in it. You are young and handsome and sensitive and intelligent. Its so unfair that you are suffering like this. Are you using anti depressants? I know several people on here find them useful. You are going to have to put your trust in the doctors. I know from experience that they CAN fix you.
Please be brave. Big hugs
 
Hi Ian,
I just wanted to let you know that I am thinking of you.
I was off work last year for 8 months. Mainly due to the horrid fatigue I suffered (I'm still not fully diagnosed but my GI believes it's CD). At the time I never believed I'd get back to work again. I basically stayed in the house for almost all my days. Looking back it was terrible. I never had to decided about surgery or any of the other issues you are having to deal with at the moment but I wanted to just let you know that I got though it and have been back at work since September. I only work 4 days a week which certainly helps!
I'm sure you'll know from reading all the posts how much hope there is out there and how many people get through such low and awful times. I know that you will be one of them and that you will be able to use all your experiences to help others in the future.
Please let us know how you get on at the hospital.
As I said before I will be thinking of you and will check back to find out any updates
Please take care of yourself
 
Dear Ian

I'm so upset little love
I don't know what to say, only that know I'm here to offer support and encouragement.
You have a wonderful support system in place with your Mum, and as a mum, she will look after your needs, and guidance.
Ian are you still on Pred? Some meds can cause erectile dysfunction. And also, Pred can/may cause psychosis too, awful deep thoughts, depression etc.
I've read an article about how Viagra can help with Crohns. I'll try to find it for you.
Put your faith in the docs, they will find out the cause and treat it.

http://www.dailymail.co.uk/health/article-378171/Viagra-treat-Crohns-disease.html

I hope you feel better soon and that you know we're always here for you
sending a big hug your way, hope you get it
xxxx
 
Ian~

I've read many of your posts here--you have given such good advice and support to people twice your age. You are young and strong. When things in my life aren't going the way I planned and/or wanted---I remember, "That just because you sink, it doesn't mean you're sunk."

Lee
 
mario said:
Ian
This has broken my heart.
Please do not have such dark thoughts because the world is a much better place with you in it. You are young and handsome and sensitive and intelligent. Its so unfair that you are suffering like this. Are you using anti depressants? I know several people on here find them useful. You are going to have to put your trust in the doctors. I know from experience that they CAN fix you.
Please be brave. Big hugs
Click to expand...

Oh Ian, I totally feel how Mario feels about your situation. Reading your story has broke my heart too :( Just want to give you a big squashy hug :hug:

Like Joan, I think your meds are contributing to what is going on with your body right now. The docs will be able to sort this out although I realise it will take time to get everything sorted.

Uni will be there when you are better hunny :)

You are an inspiration Ian, you were one of the first to welcome me on here and make me feel at home, you always have wonderful advice for everyone you give it to. You make the world a better place Ian, don't forget that hunny :)

Love & hugs to you

:hang:

Paula
x
 
Ian, Cutie, my friend -

Mario is right - the world is a better place with you in it. You have been such a friend to all of us here. Please let us be there for you, in spirit if not in person.

I hope you can get past this very dark place and find some peace.

Even though I only know you from the forum, I hope it's not weird to say that I love you, my friend, and I would be very, very sad to lose you in my life on the forum.

Please hang in there. Things will get better. They may not be exactly how you thought they would be, but they will get better.

xo xo xo - Ames
 
Glad you let us know what's happening. We'd all be even more worried if you'd just disappeared from the forum. My heart's aching for you and your family. Stay as strong as you can and let us know how it goes as soon as you can.
Much love, Helen xxx
 
Ian, you are bringing tears to my eyes. Please try not to have such dark thoughts. So, many love and care for you - all of us included! Though we haven't met in person, I feel I have gotten to know you so well over the past few weeks and you have such a bright future ahead of you. Life won't be easy, and may be quite challenging at times, but you need to focus on the positive in life. Even if you need an ileostomy, there will be more that you will be able to do than not. And your family, friends and all of us will be with you each step of the way. Please hang in there. XOXO
 
hi Ian.... i hope you do go to the hospital very soon, or at least to your gp at the next available surgery appointment - because you need reassurance more than anything, right now.

i am not medically qualified, but i'm making an educated guess that whatever pressure is causing the nerve sensations in that area to be affected, it will be a temporary issue - not permanent - and when the bowel inflammation is sorted, everything else should settle down.

the levels that our imagination can take us to are the real demons here - what we 'think/fear' is happening, or is about to happen, is more often than not a million times worse than the truth.. hence my comment about you needing reassurance.

i've been scared to the point of acute panic - it's taken me to the edge of consciousness many times, and it has purely been my mind thinking the very very worst... we need to calm this panic down and let the logic calm us at these points in our lives, and reach out to the relevant people who can help us, when we need that help... not wait, worry, & convince ourselves of conclusions that come from fear.

i'm sure this is a bad phase for you, that's all, and you'll look back on this time in the near future and sigh with relief that you've got past it, and things are better for you physically, and in turn emotionally.

meanwhile, we are here for you completely, and we want to know how things go so please keep us updated.
 
Ian,
You are really going through a rough patch aren't you. I do feel for you, I truly do. But I'm gonna be tough too. You need to get on with this disease, because otherwise, it will beat you...to death. Now, I dont think you want that do you? At our worse points, we want to give in. I've been there, and I would lying to you if I didnt tell you that about once a week, I think about taking a nice little herbal tea that would end it for me. I'm sharing this with you and the forum, although highly personal, because I think it is relevant for alot of people.

I've had to go on antidepressants to help me, because otherwise, I couldnt cope. I will admit to you that I can be a negative person at times. But Ian, you are looking at the dark side alot of the times, I have seen that. You cant cope and look at the dark all the time. You need to look forward, not back. Easier said than done. But I looked around when I was in the hospital at people soooo much worse than myself. That gave me the strength to help others, and to help myself. Your physical problems can be corrected! This is but a passing phase. I wish Kello82 was still on here...she is an inspiration, and I feel that is what you need right now. There are alot of people on here that want to help you, and are here for you. Your physical problems really can be corrected, and you should see your specialist ASAP about these new symptoms.

Please...look forward to being healthy, because you CAN be again!
Misty
 
I'm so sorry everything is hitting you so hard at once. Like someone else said, take it minute by minute. You can get through this. I know that prednisone always had negative side effects for me sexually. The few months leading to my surgery, I was flaring horribly and I felt the same as you. Like I had no physical sensation. It was like I was numb. Two weeks after my surgery it all came rushing back and all my parts work great. Even with the bag, sex is awesome now! This is a bad time in your life, but I promise you will get to the other side of this and be able to finish school and start a career. Be strong and fight!
 
I can't really say more than what the other guys have. I can promise you one thing though it WILL get better. I had to leave uni and was stuck at home for 6 months before I had surgery, and I had my down moments, I even planned a list of things I wanted certain people to know if I died.
When I was really depressed in hospital they got me in touch with a hypnotherapist, but I never continued with it as it was the pain making me unhappy so I felt the only solution to feeling better was getting rid of the pain, but this may work for you.
Feel free to email me because its really sad to read this after you were so welcoming. You seem to be a real integral member to the forum :)
 
You may not have nerve damage Ian so keep your chin up. It may likely be pressure cutting off blood flow but that doesn't mean you'll lose the function of your bits. Hopefully you've mentioned all this to your doctor already, including the bouts of depression. Just because you sometimes wish you were dead doesn't mean you're suicidal. It means you're human and your doctor can help you with that (through therapy, medication or both for now until you get better). Don't worry, they aren't going to throw you in the loony bin.

As far as the stoma goes, from what I hear on this forum is that its not all bad and that it made their lives better ten fold. After being on this forum, I no longer fear the possibility of a stoma and I'm only 28. Having two different ones may take some getting used to but I know someone who's done it and they still live a happy healthy life.

I know that your symptoms haven't been that bad and that's great but the fact of the matter is that on the inside, things are not going well and its sounding like those affected areas cannot be saved. Scar tissue cannot be healed only removed. There's so much out there to live for and don't let a couple of stomas get the best of you. You can still travel, swim and do anything with a stoma. I guess for some people though they become a mental ball and chain, don't let it get that way though. You control your life, not those pieces of plastic.
 
I can relate as I have to do this on my own. I do not have family members to support me and I have felt at times very similar. I also had to leave university with 2 units to go.
I had to find support people so as not to overwhelm my friends.. This forum is amazing as there is an understanding when no one else seems to.

You can do this Ian and know that things can change for the better when you least expect it.. so dont give up before the miracle happens.....

what helps me is to remember the only way out is through.....

keep in mind what Astra (Joan) said about the prednisone and how it can affect mental health... it may be the drug talking...
take care and hang in... find as many support people as you can right now - even if it is professional...many people here rely on anti-depresants...it can also help with pain..
I also have to rent tons of comedies and I am on news fast... and have to limit myself to only positive people (difficult to do) until I can get back on track...

good luck my friend :)
 
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I am agreeing with all of the comments and suggestions. The Prednisone really does play with your mind and emotions. I have battled with depression and anxiety for many years and have been on Zoloft. It works for me. I know that the chronic pain really does wreck havoc with the seratonin levels, which can lead to depression and anxiety. I have heard of people overcoming it on their own, but in my case, I needed medication.

I am very happy to hear that you have such a loving and supporting mother. I know it must be super hard on her to see her son suffering and feeling down. Please take it easy on yourself. You've done nothing wrong and you still have a lot of life to look forward to. With technology increasing all the time, we (CD sufferers) may be in for some pleasant surprises around the corner. I am hear for you my friend.
 
Aww Ian ...

This is so sad to read that you are going through this. You will get through this though. I am sure that your doctors are doing everything necessary for you to be healthy again. It is just a frustrating and sometimes depressing road to health when it comes to suffering from Crohns. I can understand that this is very depressing right now but you have to try to stay strong as hard as that might be. I am glad that you have a very supportive mother. Like Andi mentioned it must be hard for her to see you going through this. My mother always tells me when I say some comments out of frustration...you just do not understand what it is like for me. Be happy to have the love and support from your mom, because that is what family is for. To be there for you during these hard times. As far as being upset about graduating when you wanted to...trust me I know the feeling...I had to stop so many times for undergrad but when I felt that my body was ready I kept going back till I finished. You will get there and it will feel like such an accomplishment when you do because of everything you went through to get there.

You have many friends here on the forum who are wishing you all the best
 
Awwww, darlin . . .
Not really much I can add to the above, I know it doesn't feel it right now, but I'm certain things will improve. Don't write off your life, qualifications or career just yet.
I don't know if it will help you, but I do lots of stuff with my patients at work about feeling important . . .
1, write a list of all the reasons you are important-this will help you to feel less of a burden to your family but also put you in the right frame of mind to deal with the hospital.
2, write a list each day of your goals for the day-it can be anything at all- last week my list started 'don't crap myself' and ended 'eat my crusts', then be proud of yourself when you achieve.
3, do not let what is going on now consume you-the more you think, the more negative your emotions will become, you will talk yourself down. If it helps, try to think of all the amazing things you have going for you . . . I'll start you off, you are: intelligent, articulate, caring, supportive, valued, trusted, cared for, loved . . . . you can do the rest.
4, if you can get your hands on a book called 'the secret' do. I nearly punched my sister for suggesting I could 'positive my way out of this situation' but actually, it does work, trying to maintain that 'glass half full' mentality through the pain, torment and difficulties really does make things much easier.
Ah, that was long. Essay over! If the above works I have plenty more things you can try :)
We love you muchly!
xxx
 
Dear Ian,

My heart ached for you as I read your deeply honest and open post...Thank you for being so brave to share with us here. You are right, like most I am unsure of what I can say to offer you much comfort, I feel that you have so much to face and go through...mere words would not be enough.

I can not say that I know how you feel, I do not have Crohns, but, I can share one experience with you in relation to my Son, he is newly diagnosed just this January.

When Danni was taken into hospital I thought I was going to lose him, he became extremly unwell and his CRP was 376!...He became so tired of being pulled and prodded about by the Drs, and he was tired of taking all the medication, he turned to me one evening and said 'Just leave me alone, I don't want to try anymore...I don't want to live' As his Mum, my heart felt as if it was breaking into a thousand pieces, the pain was unbearable. I turned to my son and I told him...'You don't give up, you don't ever give up!!!' 'We love you...you are worth fighting this and YOU CAN GET THROUGH THIS!'

I told him 'The day you give up on you, means you give up on me'

Needless to say, he didn't give up...and he is now at home and, well, doing ok.

So Ian, I say to you, you are special, you are strong...and Ian...'YOU CAN GET THROUGH THIS!'

You make sure those Drs do ALL that they can for you and more...don't take or accept anything less than their best.


You are in my thoughts and prayers Ian, take care and God bless...be safe.

Love Lorraine (Mum of 19 year old Son with Crohns)
 
IAN!

CAN YOU FEEL THE LOVE IN DA HOUSE??

Pop on and let us know how you're doing little love, ok?

:kiss::hug::ghug:
 
I'm so sorry Ian,
Crohn's is such an irrational disease.
You are rational and you seem strong and I think you can get through this. We're all here to help.
 
Does anyone know how this boy is doing? I am worried.
Hoping he is in hospital and being taken care of.
Is anyone in pm contact?
 
Hi Ian, most of us have been there in the dark place... sometimes it is hard to get out because you think you are alone and scared being so young. Try not to guess until you get your doctor to tell you it is permanent. You really have to pull yourself up from somewhere, I know it seems endless now but I promise you, it will and does get better. We are all here for you , anytime of the day or night. Hang in there sweetie, Crohns sucks and we all hate it but we are all strong and manage to survive.

Lotsa hugs to you!!!!xx
 
I'm here, at home. I can't be seen by a GI until next Monday.

Have been told to hand in a urine sample, which I know will come back negative. I'm sorry but I feel it in my gut, these new symptoms aren't going away. It's all coming from the rectum which has been completetly destroyed and has caused god knows what damage... I know I sound mental, if I was on the other end of this I'd be telling the person to calm down and not jump to conclusions too. But I can feel it..... this isn't just about having a stoma now. This is about losing all my bodily functions and being expected to live with it. How am I supposed to do that? It's just a painful existence...
 
Oh, Ian, honey. Please hang on!!! A week is along time to wait to see the doc, and you must be so anxious.

We're all sending positive thoughts your way. Please pop on from time to time and let us know how you are doing. We are all so worried about your well-being.

xo xo xo -Ames
 
Ian,
Nothing I can say to make you feel better. Just try this, okay?
Breathe. Don't focus on anything else. Second by second is sometimes what we can do. Forget tomorrow, next week; just focus on breathing, second by second.
Focus on the simple things right now. Please stop looking at the big picture because all you are seeing is a black screen. You believe it is permanent; I respect that. However, I am going to continue to believe that what you are feeling is a temporary situation caused by prednisone & extreme emotional upheaval.
You will be seeing the doctor on Monday March 21. 7 days. Sounds like forever right now, I know, but when compared to a lifetime, 7 days is an eye blink.
I don't know how things work in the UK but isn't there some type of emergency medical department that can help you quicker?
Please be kind to yourself.
Michele
 
Hey Ian. I agree with Amy! Keep us updated on how you are doing. If only to just vent and let it all out.

I have no idea how you feel. In the smallest way possible, I can empathize. I went form being a healthy 23 year old with no pre-existing medical conditions and than BOOM. One day I have Crohn's. I was devastated. I was alone, with the exception of my husband, and it was very difficult for me to feel positive about things at times. I know this can't even compare to what you must be feeling and having to deal with. So, when I think about how terrible I felt then and imagine your situation next to mine...I'm just at a loss for words.

You are an amazing person. I know that's probably not how you feel right now. But just know there's a whole lotta people on this forum that look at you as an inspiration--me being one of them!

Copying Joan...here's a big squashy hug! :::HUGS:::
 
There is but the reason I'm not seeing a GI until Monday is because they're away on a conference (!). If I go to Accident & Emergency I'll be on a general ward with no specialists coming by. They can't do anything for me (not that the GIs can either).
 
Hi Ian. I just joined recently and your post really struck a nerve since I can relate completely. I had always been a happy, active, optimistic person and when I stared having horrible pain from an abscess/fistula, my life changed completely. I lierally went without ANY sleep for 6 weeks. I know that sounds impossible but I swear it's true. I would toss & turn all night worrying and crying out in pain. Before I knew it, I was suicidal. I could not concentrate on anything (couldn't even watch a TV show), my memory was horrible, and I felt no emotion (even joy when seeing my daughter).
PLEASE TELL SOMEONE HOW YOU'RE FEELING AND GET HELP! Getting sleep is so important and insomnia can lead to serious mental issues. If you can't sleep hopefully you can get some sleeping medication and if you can't trust yourself, ask a family member to keep the perscription in a safe place and give you a pill each day.

I swear that getting help saved my life. All the while I was suffering through fistula pain, anxiety, and then delivering a new baby, I became severly depressed. I wanted it to end... it just seemed so unfair and too much for me to handle. I went inpatient to a hospital since I just wanted my pain & suffering to end and I couldn't imagine how I could ever get back to feeling great and happy and being a mom. I was put on a few different psych medications but they didn't seem to work and I eventually had ECT treatment which did the trick. I would never have believed it but I'm back to myself, feeling joy and being happy to see the people I love. When I was at my worst I never believed it was possible but it is. I also recommend that you find a therapist who you can speak to since that is also important. This is nothing to be ashamed of and it's just important that you be honest and let others know how you feel. After I came out of the hospital I went on to have 5 surgeries over this past year and although it sucks, I have great support and I'm able to leave a relatively normal life. Know that you are not alone in how you feel and it will get better. I wish you the best and if you consider to feel suicidal please develop a plan - get the numbers to a suicidal hotline and have it programmed in your phone in case you get to a point when you can't control your thoughs.
Dgg
 
Ian, it's lovely to hear from you, but not so lovely to hear you are having to wait for help :-( I think we can all respect that we know our own bodies and that something is very wrong - you don't sound like the type of person to panic unecessarily - but hang on in there buddy til you can get to see the docs.
Dgg your post is heartrending but at the same time inspirational. Ian, do you think it might be worth seeing someone and getting something to help you with the mental pain, even if it's just for the week til you see the GIs? Are you sleeping any better, cos deprivation will wreak further havoc on your mind?
I'm suspecting you might not have told your family how low you are feeling through a wish to protect them. Speaking to a third party might take a bit of pressure off them and you.
If only love could heal, Ian - there is so much of it coming your way.
Helen xxxxx
 
I'm glad you still hanging in there Ian, as I said to you the other day, feel free to messge me again any time if you wanna chat.
 
I'm glad to see that you are still on here. It has to help in some way. I'm sorry you have to wait until Monday. I understand why you wouldn't want to go to the emergency care. The emergency care in my area is worthless and we all know more about Crohn's than they do. I think when we get to the point when we KNOW we need surgery, we start to feel like we have a foreign object inside of us that needs to come out. I felt like my diseased colon was infecting every organ around it and had to come out immediatly. It didn't, but maybe in time it would have and my body knew it.
 
Ian, love your heart, I'm sorry you are having such a tough time of it. I see all the kindness and sense of humor you extend to everyone on this forum and really hope you get a fraction of that back now when you need it most. Just take it one day at a time.....it's hard, though, not to think "this is forever". But just one day at a time. Keep us posted.

I'm hoping you'll be able to get some peace when you see the doctor.

Thinking of you,
 
not alone Ian

I joined this forum today , I havn't been able to speak to anyone the way you have . I am a 50 year old man whose life seemed to come to a stop 2 years ago . The men in my family never opened up to a soul when they were ill .
I had a bowel resection in 2000 and have battled with this until i collapsed in my back yard 2 years ago , Ian all these things in your head are in mine also . If not for my wife and her alone god knows where i would be.
You are a very young and strong man , i can't speak for all here but i think i do, when i say you now have an entire world of support and people who do care .
My name is Allen and i don,t convey my thoughts the way you do , but if you need a friend i am here.
 
Ian, you remind me of myself. I had to drop out of college too. I had to have an emergency colostomy at 21 because my bowel basically exploded. I woke up with a colostomy and I was devestated. It was 2 months before graduation. I thought it was the end of the world, and I really did not want this life. I even contemplated the worst. But I pulled up my socks, and I went back a year later, and I finished. So it can be done. I even dated while I had the colostomy bag, even though I knew I was getting it reversed. There are people that can look past a bag. Really there are.

As for your problem, doctors dont care about that kind of stuff, they just want to help you. And if it is from the inflammation, you will likely get sensation back when the inflammation subsides, which will happen after your surgery. Its likey the inflammation is pressing on your urethra making it hard to urinate.

Feel better soon.
 
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I just wanted to check in with you, Ian. I hope you are feeling better and that your spirits are brightening. You're still in my thoughts and prayers, buddy.
 
Hi,

Sorry to report I'm not feeling any brighter. I'm so sorry. I feel like I'm letting everyone down by not being able to make some kind of peace with this, but I just can't. I have spoken frankly with my mum and sister about everything - it's all I do all day, going round and round in circles telling them why I can't do it. They know how I feel but obviously they can't help.

I spoke at length privately yesterday with someone on here, and revealed some pretty personal things that helped them to understand why I see this as so destructive for me. It's devastating for ANYONE, I know that, buf if you see life as the most important thing, above all else, then maybe you can find a way to accept it. Unfortunately I don't have that outlook. I know, I'm disgusting. But I don't have the lust for life a person needs to push through. I'm a selfish control freak who despises disruption and needs things to go his way. For this reason I limited my expectations in life to things I thought were within reach - I didn't want to be disappointed, and never expected to be exceptionally happy. I just wanted to be content and comfortable and in charge of my own life. Now I never will be. I know in theory we can't control what's going to happen in life, but this is just... I don't know. I can't express what I'm feeling. I just want some peace, which I only get when I sleep. I wish I could just sleep forever.
 
Ian! Oh man, too young and wise for this! I truly understand and know that feeling of --don't want to go on!--But, Ames is right, know that this is a set back...and it will stop and change...We are not there physicallly for you..but we are in our minds and spirit. Stay strong ( I know it sucks! ) BUt, keep posting.....Sue
 
Ian
you have nothing to be sorry for. I think it is safe for me to speak for everyone on the forum that you have not disappointed anyone.
I am glad you are talking to someone - I know how difficult that is. In fact, I bet a lot of people on here are proud of you for doing that even though all you want to do is sleep. Know what, it is okay if all you want to do is sleep. I am sure lots of us do. It is also okay that you are feeling so depressed - that means you are feeling...which means you are not in denial. It can hit you now...or it can hit you later... please keep doing whatever it is you need to do to keep yourself going. Hang in Ian... things are going to improve and you will have peace.

Take care
Wendy
 
I just feel like I'm being really offensive to people who've dealt with this and more. But I honestly wish I was terminal so that I didn't have to go through this. And it wouldn't be because I chose not to, so no one could blame me.
 
Ian, in no way are you 'disgusting' or 'offensive'. I think it is perfectly understandable that you are feeling the way you do and I for one would rather that you are honest about what this is doing to you than putting on a brave face. I don't think bottling up your feelings would do you any good.
If sleep is giving you some respite then sleep. It won't be too long til Monday now.Hang on in there, sweetie.
H xxxx
 
Ian,

I know we haven't really talked, but I know what you're going through mentally. I've been where you are and I know how bad it gets because I've had very similar thoughts to your own. But it gets better. I know it's hard right now and things look really bad but I promise you that things will get better. I know that whenever I'm on prednisone or other drugs that can influence our mind that I get really depressed and I start to have these really bad thoughts. But once you get over that hill and your inflammation goes down it'll go away. It sounds like your meds aren't working for you, or maybe they haven't had enough time, I'm not too familiar with your story, but I genuinely hope that you're able to get over this curve because now that I have I feel so much better and I actually feel normal for once. I don't feel like this person who has lost everything and more to this disease. I pray you'll find that soon.

It's important to not beat yourself up though. It just makes things worse. Try to find things that you can do that you like to help destress. When I was ill and couldn't get out I wrote or I played video games to destress. Also it really does help to vent to a friend that you can trust. We all suffer differently from this disease, but it doesn't lessen that suffering for anyone. I've not yet had a surgery, but believe you me, I've done my share of suffering and I can tell that you have had your share and more. Keep your chin up, there are a lot of people here who care about you and want you to be well.
 
Dear Ian

I really think it's time to go to your GP and tell him these thoughts which are serious and damaging. You cannot do this on your own without help, either anti depressants or counselling.
It's reached that stage now and you really need to address this. This isn't going to go away on it's own, and with the best will in the world, people on here can't help you.
You've made the first step, you've reached out, you've realised there's a problem, now go and get it fixed before you fall deeper into that dark hole.
Forget about the stigma attached to mental health, this is serious.
And, no more beating yourself up with thorny branches, you're doing your well being no favours at all.
Sorry if I'm being abrupt, but I've been there, I know what I'm talking about, and no one could help me, but me.
I talked about it til the cows came home, but got no where fast.
Until the day someone listened, gave me some anti depressants and counselling.
The mind is a wonderful thing, but when it gets scrambled, you need help to get it back on track, yeah?
We love you Ian, we don't want to see you come to any harm cos we care.
Let us know how you are
Joan xxxx
 
I can't add anymore than what Joan has said.
Ian, please follow her advice. She speaks the truth. You need to try and get this sorted now.
You are in my thoughts

Sam
 
Astra101 said:
Dear Ian

I really think it's time to go to your GP and tell him these thoughts which are serious and damaging. You cannot do this on your own without help, either anti depressants or counselling.
It's reached that stage now and you really need to address this. This isn't going to go away on it's own, and with the best will in the world, people on here can't help you.
You've made the first step, you've reached out, you've realised there's a problem, now go and get it fixed before you fall deeper into that dark hole.
Forget about the stigma attached to mental health, this is serious.
And, no more beating yourself up with thorny branches, you're doing your well being no favours at all.
Sorry if I'm being abrupt, but I've been there, I know what I'm talking about, and no one could help me, but me.
I talked about it til the cows came home, but got no where fast.
Until the day someone listened, gave me some anti depressants and counselling.
The mind is a wonderful thing, but when it gets scrambled, you need help to get it back on track, yeah?
We love you Ian, we don't want to see you come to any harm cos we care.
Let us know how you are
Joan xxxx
Click to expand...

Totally agree with Joan Ian, please get some help to get you through this hunny!

Love & hugs

Paula
x
 
Ian
Joan is right hun. You need something now and you know, mild anti depressants are as common as aspirin. Almost everyone has needed them at one time or another, just to tide them over. Don't wait til monday darlin'. Get an appt tomorrow morning! Or even go to an out of hours gp now!!
Have you shown your mum this thread? Maybe you should.
People are losing sleep over you right now.
Help us out Ian, do something about this asap PLEASE!!
hugs (and fingers crossed you will address this)
Marie xx
 
Bless you Ian. Noone can say anything to make you feel better really. Its just something that will happen on its own, and thats the thing to remember, it WILL happen.
I had to repeat a year at college and then a year at Uni, there wasnt a single semester went by that i didnt do the maximum ammount of resits. But after 5 years i did it, and i graduated (with a 2:2!!). I honestly dont think if it wasnt for crohns i wouldnt have had the determination to do that. I HAD to finish, just to stick my fingers up at the disease. If id of had to repeat every year for the next 10 years i still would have done it. You cant let it win!
I have every faith that you will finish and you will graduate, its the best feeling in the world. (im welling up now thinking about it)
Crohns has given me the stubbourness and determination of a crazy lady! But believe me i had/have times when i feel just like you do, and i still do regularly!
If you really are at your wits and, and are willing to try anything, then i STRONGLY recommend an Elemental diet. If you feel you can cut out food completely, for the chance to minimalize your symptoms and feel normal again,then do it. I did it for 21 months - voluntarily, because i was at uni and didnt want surgery!! Or this effing disease! It was the closest i could get to not having crohns, but of course i couldnt eat (i still drank tho - well i was a student, its against the law not to! Made me a SUPER light weight! One glass of wine and i was away, cheap nights too though!lol!) and it worked for me.
But now, its not working and i finally have to have the surgery. I feel like ive been literally beating it off with a stick for years, only just scraping by. So if you do have to have it, you are certainly NOT ALONE! I know how you feel, im 25 too, and it scares the hell out of me. But im gonna keep sticking my fingers up at this disease.....because i have no other choice. None of us do unfortunately. So we just have to get on with it as best we can and NOT LET IT WIN!
Chin up, it WILL get better, we are all here for you :)
 
Not offesive at all, its hard when you dont have any hope to cling to. I pray that you find a single shred of it soon.
 
Ian I really feel what you are saying. Im 17 years of age and been on humira since about December. A couple of weeks ago I had an appointement with a surgeon for a fistula and he was very straight with me. He said my rectum is quite inflammed and that in the future I could face the possibility of a stoma. I came home that day and I will be honest I cried and cried and kept on crying. My mind was in bits. I felt life had just stopped for me and I didnt have a future ahead of me. But Ian I got over it with the help of family and friends and so will you with your family and all the support networks you have.
This disease is a horrible thing but it will not defeat us Ian. We have our whole lifes ahead of us. We have things to do, places to see and tasks to fulfill. We have a purpose in life!! I really wish you the best Ian and hope that you can overcome this difficult time. Please stay strong.
 
Hi Ian,

your story breaks my heart and I am so sorry to read it but keep on posting. We'd all prefer you write those things down and get them out and there is so much support and love here.

I only joined the forum recently so I haven't really got to know you, but I'd like to so please, please, hang in there and follow the good advice, get to the doctors and tell them how you feel

I know it might be hard to accept but the drugs will be doing a lot of this and it's only natural to feel so depressed about the effect your illness will have on your life but, believe me, you will cope, you will get through, you will find ways to feel fulfilled in the life you have and things will improve.

It is so very difficult to pull yourself out of a deep hole of despair but anti-depressants will help you do just that. Once you can at least get up a bit, onto level ground, it will be so much easier for you to face things and find ways of reconciling your dreams and aspirations with the hand you've been dealt

The doctors will understand and find ways to help address a lot of your symptoms and side effects, believe that and soldier on, we're all rooting for you :ghug:
Take care, be kind to yourself and please keep posting :hug:
 
Ditto Joan's excellent advice that professional help is really needed for you now.

I am scared to death to pop onto this thread and find some horrible news about you, I just don't think we could all handle it to lose you, Ian.

Please, please seek help!

- Amy
 
Hey Ian,

I'm pretty new to the forum but I came across your post and wanted to say my thoughts and prayers are with you. In no way are you offensive or disguisting by thinking or posting this. I'm sure anyone with a CHRONIC disease has thought this way at one time or another in their lives. I know I have. This is something we have to deal with on a daily basis that will never go away and sometimes it is very hard to see anything in a positive light.

I can tell you that when I began to feel sad and hopeless I spoke with my GP and she was very helpful. She was able to talk to me and make me feel better about it. She also prescribed me antidepressants (which I was reluctant to take), but I can tell you they REALLY help. I am able to enjoy my life, and I KNOW the pills are why I got through a bowel perf, emergency surgery, and my husband's deployment so easily.

I agree with everyone that you should speak with someone about this asap. It's definitely something that needs to be addressed before it gets worse. I'm very sorry for what you are going through right now and I hope it gets better soon. Hugs.
 
Hi Ian,

Please like everyone is saying, please follow Joans advice. I know this is a horrible thing to go through and experience, but you will get through this. Please take care of yourself and you know you always have all of our support that you can count on also.
 
Hi Ian. Love your name! I'm newish here in terms of not contributing much, but I wanted to respond to your post.

You know, I can't imagine how you must be feeling right now in your situation. Someone said above: Just breath. I agree. Take baby steps and just do what you can to get through today. I also hope you've gotten some help like some others have suggested.

I have to say, the control thing- I can relate to that. I had a plan. And Crohn's has changed that plan. I'm now left out of the major life experiences that it seems like EVERYONE else my age is experiencing right now, and it's all Crohn's fault and I can't control it. Grrr!!!! I definitely have shed a few tears over this.

But, Crohn's has also changed me in that... now I understand illness more than before. I can empathize with people that are suffering. I have an appreciation for my body and how "me" and my body aren't necessarily one in the same. I've seen how my family has gone above and beyond to support me and it has shown me how much they love me, whereas otherwise I may not have known. My closest friend right now is someone I met BECAUSE of Crohn's. So even though its hard to imagine right now, sometimes there can be good.

I hope that when the GI doc sees you on Monday, they can get your pain relieved and fix you up so you can recover quickly. Please feel free to message me if you want to talk.
 
We are all worried about you, Ian. Please, please, please take Joan's advice. Speaking with someone can only help. You must just try it. If not for yourself, for everyone who loves and cares for you.

XOXO
 
Ian,

Hi mate - how are you doing?

Many times during my 20's & 30's i felt like i had no future at all.CD devestated my life & i felt like i was living in my own private world which nobody understood.(Never had great forums like this when i was your age!)
Some of my family were 1st class but only a crohnie would understand a crohnie.When i was told i faced the knife for the 9th time 3 years ago i thought i might be heading for a stoma.One of my mates from football has a stoma due to bowel cancer - he was my inspiration as he lives life to the full with 8 years of his little bag.I was marked for stoma when i went to theatre incase the surgeon could not resect but i awoke with a resected gut.I knew from previous experience i faced a huge battle to control my guts & get the CD under control.It took me 14 months from that op to find what i needed to get the CD under control & many,many Dr's opinions on anti 'D' meds to control my short bowel.With my own research & the advice of one Dr re the anti 'D' meds i have acheived great success.I had many,many ups & downs during the 21 years i suffered but now 2 months on from turning 42 i have a life i never thought i would ever have.Please Ian,keep your chin up,in time you will find the correct treatment for yourself & i hope one day you will look back on the bad days.You are a young man with everything to live for.
Don't give up mate - you will have a great future.

Best Wishes
 
I'm praying for you, Ian.

I'm in the same boat as Joan. I'm hoping you seek out some professional help, as it's obvious there is nothing we can say here to help you out of this place you've been sucked into.

You are not disappointing. You are not disgusting. We all REALLY care about you and are pulling for you. :)
 
Ian said:
I know, I'm disgusting.
Click to expand...

You aren't disgusting in any way. I don't see why you would think that.

Ian said:
But I don't have the lust for life a person needs to push through.
Click to expand...

You need something to look forward to. Focusing on all the "bad" things in your life is just bringing you further and further down. There are people in your life worth living for and every one of those people need you. Do you like fishing? Set up a date and time to go fishing if you do. If not fishing then something else that you enjoy doing or at least used to enjoy doing. Your friends and family will have tons of suggestions and you may say no to all of them but it may spark the tiniest interest in something and even if you have the tiniest interest, DO IT!

Ian said:
I'm a selfish control freak who despises disruption and needs things to go his way. For this reason I limited my expectations in life to things I thought were within reach - I didn't want to be disappointed, and never expected to be exceptionally happy. I just wanted to be content and comfortable and in charge of my own life. Now I never will be.
Click to expand...

But this can be controlled as well. Its different and not what you expected but everything can be controlled. Nothing is ever completely out of your control (well like you said, except for what could happen but no matter what comes your way, you can control that too). You could aim for mediocre jobs and have a vague idea of what the job description is and what you'll be doing but you don't know exactly what's going to happen once you start working there. You will have to adapt and control the situation. You do this all the time everyday and don't even notice that you're doing it. This is on a grander scale, but you can still control it.

Ian said:
I just want some peace, which I only get when I sleep. I wish I could just sleep forever.
Click to expand...

If this is truly how you feel then you should really seek counseling. You should tell a close friend or family member that this is how you feel and they can help you. As people mentioned Prednisone can fuck with your mind. Even I tried to kill myself the last time I was on it. SEEK HELP. I told my mom and she got on the ball and got the help I needed and I'm glad I'm alive today. I love my boyfriend, family, friends and all my pets and nothing in the world can change that. You may not have that outlook now, but you can. You really can.
 
I just wanted to check in with you, Ian. You are still in my thoughts and prayers. You are not a selfish, control freak. You are a young man who has goals and dreams. This is a hiccup in your path. It's okay to grieve, but I also think that you should receive some counseling. I'm here for you sweetie.
 
I'm sorry, I didn't go to my GP. I understand and appreciate the concern but I figured I could wait until Monday's hospital appointment.

I was calmer for a lot of yesterday anyway. I still feel the same, but I exhaust myself and go through quieter phases for a bit. I had a bath (it had been a few days... gross) and a shave (it had been MORE than a few days...), and I ate 3 proper sized meals. One of my Uni friends (maybe a couple) might be coming here tomorrow to visit me. I don't want to see them but I know that when people are depressed they push people away when they need them most, so I'm letting them come because it's probably good for me even though I know seeing them is going to devastate me at the same time.

I just can't stand the thought of how it's going to govern every day of my life, to the point that I won't even be able to do the most primal things like sleep, eat etc with ease and comfort. Yes, I'll adapt, because I'll have to, but I'll always hate and resent it. Always. Maybe if you haven't been able to do these things for many years due to illness, you feel differently, but I can't see it as anything other than an endless nightmare. My sister just left for Egypt with her boyfriend and it killed me. In fact everything kills me. Just sitting watching TV or typing on my laptop - these simple little things will never be the same again. Nothing will. The thought of that constant struggle... that's what makes me want to sleep and not have to wake up. It's not that I want to die, trust me I don't! But the thought of that life makes me feel so trapped and I just don't want it.

Sorry, I know I'm not making any progress, just thought I should post.
 
Yes, glad you posted Ian, peeps are a tad worried!

Talk to your doc on Monday, tell him everything that you've told us.
Enjoy your time with your friends too, talk to them, make them understand. There's not an awful lot awareness out there, they need to know how it's affecting you.
I wish you well, keep safe
xxxx
 
Hi Ian, I am so very sorry to hear what a tough time you are having. I haven't been on here as a regular for a bit of time and was asked to pop in by a very special friend of mine who stepped it up at a time when I was in a spot like yours. This person managed to reach across the world and step from the cyber world into my world and heart forever.

I used to be a monitor on here and was a regular for a long time before that. I met some of the most beautiful, strong, and loyal friends on here that I have ever had the pleasure of having in my life.Some I talk to on facebook now and some i email, also unfortunately many that i have lost touch with. I ask that when you are able to, that you read the thread called "Our friend Jerman" as I just read yours. Although this thread covers a very personal and traumatic time in my life, it may help you to gain some perspective or at least some proof that you can in fact make it through this and even more that life's trials hold in store for us at times.

Ian, I am a 44 year old father of 4 with a wife of nine years-now looking like we will make it to ten. I went through one of the most dark and trying times of my life a journey of more than two and a half years that has just recently settled to a level of normalcy very very recently.

I work in Human Services, helping individuals with disabilities, and have for the past 21 years. I lost my job in March of 2009 due to funding shortages from the recent economical downfall. I tried to busy myself around the house doing projects & landscaping type things and figured I would just ride out the job market,collect unemployment and find something I liked at some point.

I had interviews here and there but became very, very depressed`at my perceived inability to "control my destiny" or to put it bluntly- find a frigging job.

I had always had a "nervous stomach" which I guess is a nice way of saying I was no stranger to crapping my guts out when stressed, nervous, or upset.

I started to worry more and more-would I lose my families house? Had I lost my professional confidence to the point that EVERYBODY could tell and didn't want to hire me? I started to get a pain under my right ribcage when I used the bathroom or at times when I felt very stressed.

I had many more days soon filled with viscous pain, and me doubled over either sitting on or vomiting into the toilet. I had many ambulance rides and admissions, dozens of tests and some very anger filled rants/threats with doctors and hospital staff that at times didn't believe and at others just couldn't help with the pain. I am not proud of this but on more than one occasion, I asked doctors to step a little closer to the hospital bed so that I may show them just where and what the pain felt like. (you should have seen some of the looks I got in reaction :blush:)

I was accused of being med seeking, psychosomatic, and my favorite, "you just don't show anything on the test."

My depression deepened further and I was classified as now having chronic clinical depression as well as having developed an anxiety disorder. I became more angry and withdrawn, in pain every single damn day to the point far too often where i couldn't stand up straight.

I avoided going out, visiting family & friends, couldn't even answer the phone when people i truly loved would call. I increased my isolation and became a very bitter person to be around. I frequently thought about and sometimes talked about suicide. All that kept me around were my kids.

One night my stepson (21 yrs old) and I had a terrible argument where he and I escalated and he aggresed upon me. I pulled his shirt over his head and stepped away, avoiding anything anymore from happening. However, my wife was finished with seeing me withdraw and continue to spiral downhill both physically and emotionally. She told me i had to leave.

A friend picked me up and we talked for hours and hours. I cried a lot and shared that if I couldn't see my kids and be around them that i didn't have any reason to stick around. The thoughts of not being able to see my babies grow and thrive devastated me even more. I wanted to die. I had been in therapy and on antidepressants for months before slipping to this point but had lost all hope.

After much talking on here, with my cyber family, and with my friend who picked me up as well as the friend mentioned above, i realized i had fallen too far and called the police to have them come to take me to the psychiatric hospital. I only stayed for four days but the medicine changes and therapy as well as finding the right stomach medicine, helped me to want to live again.

I still have some stomach pain at times, still get anxious and depressed at times but I have climbed at least 3/4 of the way back up the hill. I am back to work, back with my wife for almost a month now and have my boys (previous marriage) staying HERE in my home with me for the first time in seven months this very weekend.

So.....Ian, the point of what was supposed to be a quick note of inspiration, that turned into a bit of a babbling rant, is that YOU CAN DO THIS! You may be beyond the point of a winning lottery ticket or a sunny day pulling you out of your depression so please talk to your doc about these issues. Also please feel free to PM me and I would even be will to talk on the phone if you think I may be able to help from the point of having been there. I can tell even though I have been away that many of the wonderful souls who belong to this forum family care for you a great deal. I am reaching out to help as a kindred spirit and friend. Please let me help you, you can do this.

Jerry
 
Hey Ian,

I think you have progressed quite a lot actually. You're email does sound a little more hopeful.. the bath, the eating, having friends over... pat yourself on the back for the small accomplishments... keep putting one foot in front of the other... you will get your life back - perhaps not exactly the same but you will appreciate things a lot more than you use to...

good luck at your appointment... I have one Monday as well :)
Wendy
 
Great to hear from you Ian and thanks for keeping in touch :hug:

I know what you mean about becoming reclusive when depressed and I'm relieved you are strong enough to see your friends and not push them away.
I'm sure you will find that it is good to see them :thumright:

If you can, try to get yourself out for walks, even if just to the shops. I know it takes some push but just getting out will help with the depression.

When you see your doc on Monday try to tell him/her everything. Don't be embarrassed and hold back. What you are feeling is normal and you are not alone. Your doc will understand that

I know it's hard but try not to think of things you feel you will not be able to do ( anti depressants will help you with things like that) Try to take one day at a time.
Find things to do that you enjoy or that you will feel good about doing. Maybe cleaning that cupboard, sorting that sock drawer, any little thing :)
Be kind to yourself, try not to berate yourself and keep posting, thanks :ghug:
 
Ian said:
Sorry, I know I'm not making any progress, just thought I should post.
Click to expand...

Thank you for posting. You ARE making progress. Allowing a friend to come over when you're feeling this way is a BIG deal and shows that you're willing to give some things a try to feel better. Admitting that you aren't suicidal is progress too because many of your posts have been sounding more and more like it and we all worry for you. As far as I'm aware, you haven't even had these procedures yet so do your best to live your life the way YOU want to even though I know you'll find a way to control your life on your own instead of letting your new life control you. I should hope that you've contacted your doctors about the numbness you had been feeling as its possible they may have a solution for you right now or they could take a look and get things rolling sooner rather than later.
 
Hi Cutie - Thanks for keeping us posted. Not sure if you can tell, but we are clinging to every little scrap we can get from you because we are so concerned.

Don't sell yourself short. In a severe depression, a bath and a shave are huge steps forward. One day at a time.

Thank you so much for popping in. It really made my day!

xo xo xo - Ames
 
Hi Ian. I know you don't think so now, but this will pass, and life will get better. Just don't make any major decisions right now, and don't think it will always be this way.
 
Hey Ian,

There is life after an ileostomy mate honest, you hang in there.

Sounds to me like the erectile thing will recover after everything settles back down, and hey, if it doesn't then the docs will give you medication to give you a serious hard on. Thats for sure, so don't worry on that score mate.

Remember to stay as positive as you possibly can and as best you can chill out, i know you may think its easy for me to say but believe me mate i have been there big time.

We are all rooting for ya fella.

Chin up !!
 
Hi Ian,
i am so sorry to hear all that you are going through! I hope that your appointment went well today and that you update us all soon!! 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
 
Ian, I always feel a little odd commenting on these very serious threads. I obviously know nothing about the physical pain and fortunately EJ's problems have continued to be mild. I hope you are able to come to grips with this. There's a lot of inspiration to be found from many of the osto-mates on here! Hang in there Ian! You're much needed and a valuable member here!
 
Ian- what you said about never expecting better- that was me to some extent. I used to be afraid of everything, and lived my life in a very lonely way, but I thought that was the best I could do.

However, having come through what I have in my life, I now believe that all of the pain and trauma I went through has made me so much more able to appreciate what I have in my life now. I have been through a lot in my life, including abuse that lead to self hatred, but I have come out of it, and I have made something of myself, despite it all. Now, I live my life in a way that I am proud of. I am grateful for the people who are in my life, and I am grateful that I forced myself to keep going and to stay strong when I honestly thought I couldn’t take it anymore.

The One thing that kept me going when I had the possibility of a permanent bag (besides how much better I felt when I had it, and the support I found here), was the very real possibility that the technology would improve within my life time. You need to realize that a lot has happened in the battle against Crohns in just the last 15 years or so. I was lucky enough to be put on this new fangled drug called Remicade when I was 14, and although it didn’t cure me, it did make my life a lot easier than the Crohnies who had come before me. Having the bag last year was scary and depressing at times, but it did help to think that even if it did become permanent, there was no reason to believe that they wouldn’t keep making improvements on the technology of the bag in my life time. I don’t know if that will be comforting to you or not, but it comforted me.

I also really think that it would be helpful for you to meet other people with stomas in real life. This forum is great, but there is just something about actually meeting another person who is going through the same thing as you and realizing that they seem so normal, and their lives are okay that I think really helps in a very deep way. There are support groups all over the country! Just ask your Dr. where to find one.

It took me a long time to get my degree because of this disease, and I really understand your frustration there. But, I eventually did get it despite everything, and I am even more proud of myself for my accomplishment then I would have been if I had done it in the traditional 4 years.

Having a stoma was the hardest thing I could imagine before I had mine, but the reality of it wasn’t really so bad, once I got past the initial shock. I had my dark moments, but I learned how strong I could be because of it. I hope that I will not have to have a bag again in the future, but if I do, I know that I will still be able to have a productive happy life with it. I even got married with my stoma! Some of the happiest times of my life so far took place while I had a bag.

Ellowyn- this is so beautiful and true: “I told him 'The day you give up on you, means you give up on me'”. I had some dark moments in the hospital last year when I told my husband and my sister that I didn’t want to live through all the pain any more, and although it was true at the time, I wish so very much that I could take back those words and make it so they never heard them. It must have been so awful for them. I just wasn’t thinking strait at the time.
 
Ian
Any news luv?
None of us have forgotten about you.
Please check in if you feel you can.
Even just as a favour.....
please.
Love Marie xx
 
Thank you everyone. I'm so sorry I'm causing so much of a stir on here, I really am. Please try not to be too concerned, I'm not alone and have people looking after me.

Jerman, thanks for sharing your story. I was semi-aware of it already having stumbled on an old thread recently, and it is inspiring. I'm sorry you've been so much and I'm glad to hear you got through it. Objectively I know things will, at some point, feel better than they do right now. It's that they won't ever be anything like the same that I'm finding it impossible to accept. Never was good at the whole grief cycle.

Had my appointment on Monday. Urine sample came back negative (duh) and they're arranging an MRI of my pelvis, to check on nerves and the possibility of a fistula, which the doc thinks is unlikely. She’s not too concerned about, but I know what I feel… we’ll see. Obviously nothing has changed, but I talked things out as much as I felt I could – I cried some (HATE crying in front of people that aren’t family/friends – it was even worse when my cat was put down and I cried in front of the vet!), and said I’d been under extreme stress with it all, and so I’m going to speak to a psychologist although it won’t be for a while. And I will try and get something to help me sleep longer. I feel so weak and exhausted – can’t tell how much of it is the disease and how much of it due to not sleeping and wearing myself out with constant stress.
My friends came to see me on Sunday which was nice, but heartbreaking at the same time. I’ve forced myself out of the house a couple of times – just to the supermarket and a friend’s house, but it was pretty tough going. Seeing people go about their hum-drum lives just makes me want mine back :( But I will try to keep at it, there are some things I want to do soon if I haven’t declined by then, and need to build up some strength as my legs have turned to jelly from sitting in bed all the time.
 
Ian, are you still on 40 mg pred? No wonder you cant sleep. They have over the counter sleep meds, like Nytol. Benedryl or Gravol can also help you sleep. I took Gravol when the pred kept me awake.
 
No I'm tapering, down to 25mg. It's never affected my sleep too much in the past though. I can normally get to sleep, but when I wake up a few hours later and stuff starts going round in my head, I can't get back to sleep. Need something to knock me out for longer.
 
Glad to hear you're pushing through it, Ian. That's all you can do at this point. :) Thanks for checking in and letting us know how things are going. I think you're doing some great things despite what you're dealing with. You're tough, kiddo. ;)
 
Hi Ian
Have they ckecked you out for vitamin defiiciencies? After my op and months of steroids etc i still felt weak and had 'jelly legs' until someone noticed i had almost zero B12 in my body. I had an injection of this and it was nothing short of miraculous. Within days i was (almost) energetic for the first time in a year! Shout loud and tell them what you think you may need. Sleep meds are easy to get. Blood tests are easy to get. In retrospect i have realised the docs are looking to you for guidance.. Use the expertise of the people on here to inform your doctors!
Anyway sweetheart thankyou for getting back to us. You're a good lad....
Love and hugs to you and your family
Marie :) xx
Thanks for replying hunny.
 
Ah, Ian, it's good to hear from you. :kiss: And your sense of humour and spirit shine through in your post.
 
Great to hear from you Ian :thumright: and don't worry about letting it all out, that's what we're here for :hug:
 
Ian, I don't have much to offer you right now, and probably can't help cheer you up, as I'm in the same place as you are emotionally, and in terrible shape physically as well--but I wanted to say I hope this is just a bump in the road for you and you come out strong and healthy. You are way too young to suffer this way. Hell, so am I, for that matter. For what it's worth, I care about you, and so does everyone else in this awesome community. If it helps, I for one totally understand your despair and rage. You're not alone. :hug:
 
Just thinking of you Ian!

We can have jelly legs together - mine are turning to mush! ;)

Keep us posted. xo -Ames
 
Ian said:
No I'm tapering, down to 25mg. It's never affected my sleep too much in the past though. I can normally get to sleep, but when I wake up a few hours later and stuff starts going round in my head, I can't get back to sleep. Need something to knock me out for longer.
Click to expand...

I find I do fine on higher doses, but when I start tapering, I get really bad anxiety/paranoia, and panic attacks, and I cant sleep. I would get so anxious I would just pace back and forth, because I just could not sit down. In fact, I will never take prednisone again unless they give me something like ativan or xanax with it, because tapering makes me a mental case.
 
I also had trouble sleeping when I got down to lower doses this last time on pred! Weird because I had no trouble at all at 40 mg!
 
How are things going Ian? Glad to hear you have been getting out some even if it is for a little while? I still think one day you will be a TV personality and will have all of us harassing you for autographs :D
 
Thinking of you too today Ian. Hope you're hanging in there, Cutie.

Give us an update when you can, we're all hoping to hear from you that you are doing better.

xo - Ames
 
Lydia said:
I find I do fine on higher doses, but when I start tapering, I get really bad anxiety/paranoia, and panic attacks, and I cant sleep. I would get so anxious I would just pace back and forth, because I just could not sit down. In fact, I will never take prednisone again unless they give me something like ativan or xanax with it, because tapering makes me a mental case.
Click to expand...

This is such a good point. My regular doc. prescribed me ativan and the other evening I was so worked up and worrying about a huge list of things, I just couldn't get my mind to focus on sleep! I decided to try one of these new pills... it was such a relief. It was amazing how easily I fell asleep after that. AND slept the whole night. Something that you might want to look into Ian!!
 
Just checking on you Ian, to see how you are doing today. I hope that you are better. Hang in there

Thoughts and prayers are with you.
 

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