I still hate my stoma

[Andrew84]

I have had a stoma for nearly 12 years and I still hate having one. I now an illeostomy and occasionally get obstructions which in themselves is just about bearable but it's the cramp pain that I get in my calf that is the worst, as bad as when I had compartment syndrome. It is so strong that I cannot correct it myself and on several occasions the nurses just mock me and tell me to grow up. It makes me wonder why they bother putting people to sleep for operations as surely it can't be anymore painful. It is more painful than recovering from all of my major bowl operations. I remember watching a documentary of a man dying from MND saying that the thing he really feared above anything else was when he was completely paralysed and mute was not being able to let someone know he was suffering. What is the point of being able to let someone know that you are suffering if in my case (on several occasions) you can't do anything about it and nobody is prepared to do anything about it to help you either? Living with my condition is like being stalked by a violent monster that no power on earth can control. I have frequently considered being the 3rd person to use Dignitas in Switzerland to set me free of this nightmare. I realise that this post is not a positive one people would like to read but what is the point of having a discussion forum where you can't open up fully and express what you really feel.

 

[Terriernut]

Andrew84, you're saying your CALF pain is that horrible? Oh dear. What is causing this???

What meds are you on, and what do the Dr's think the problem is?

No one believes that having a stoma is 100% positive, so no need to feel that you are the odd one out! I love and hate Stan. He's got a wicked sense of humour (got it from his mum) and he can be an absolute twit at times. But he saved my life, so I will live with that!

 

[Andrew84]

My CALF pain is that horrible when I get cramp due to severe dehydration due to obstructions. The Doctors can not do anything about it.

 

[vonfunk]

The calf pain could be a potassium issue. People remember salt when dealing with the dehydration, but not potassium.

 

[Andrew84]

I know, but if I can't take anything orally when I have an obstruction as it would be vommited up and would have to wait hours at a hospital to get a drip so basically I have nowhere to turn.

 

[Terriernut]

Where are these obstructions at Andrew, and why are you getting them alot? Perhaps a new thread might help as well on here, as obstrucions are not all stoma related. However, I'm wondering if you are drinking powerade or something daily as well, to help you out. Even with my colostomy, I can dehydrate at a seriously rapid rate.

I end up sleeping little because of the muscle cramping, which will wake me up screaming at night! (I dont mind this because it wakes the 2 year old twins up next door and I OWE them that! the little b*&stards)

This forum is here to help you, and I hope you know you are NOT alone in this.

 

[Andrew84]

The obstructions are because of the internal scar tissue. I don't have children myself as I had my confidence shattered by the sexual bullying at school, being abused by my father to the extent I had to go into care and also not wanting any child of mine to turn out like my brother who has a severe form of paranoid schizophrenia. Having a stoma just added insult to injury to my already low body self-image so therefore I am single as I don't have the confidence to go out much to mix socially with people therefore I stay in most of the time except when I go to work or shop mainly.

 

[Terriernut]

Ok, so of course we've got alot of internal scar tissue to deal with. I've got a whopper of a problem in my transverse colon. So, I'm eating very low residue now. No fun. Is that how you're eating now? Are you on Aza or 6MP currently? Or anything else at all to manage this?

Honey, I didnt have kids either. I dont blame you with what you've been through! But, you are who you are because of your past. If you STAY that way, it is your choice. Every minute of every day, we make a choice. You can let life beat you, or you can kick its ass back. Crohns is a horrible disease, but it can be managed one day at a time. If I showed you a picture of this body from last year to this, you'd wonder why I ever left the house. But you know what, I've got to keep the roof over my head, and the heating on. I wont go into my past, but it's not pretty either. What I've found is, we have one helluva alot more strength inside than we think we do. And it comes from YOU. When you hit that wall, you have a choice, and you are alive, and you can make miracles.
:heart::heart::heart:

 

[acg101]

Andrew - Sorry to hear about your troubles. Dont despair no matter what as I am sure you are a strong person and you can overcome any challenge. You are alive, working and productive person. fight on!

 

[Misty-Eyed]

I agree with Misty and acg101. So many people on here have had awful things happen to them and obviously all with very embarrassing problems. I, myself only really got a chance to address my past ghosts last year with a load of counselling. It meant that I've taken my op and my new stoma in my stride and I actually love my life now. I've never been happier.

Yes, the pain must be awful but never give in or give up!

 

[ameslouise]

I moved Andrew's post and the supporting posts to their own thread so we can offer our support to Andrew in his ongoing struggles with his stoma and related issues.

Thanks - Amy