There should be psychological testing for colectomy surgery

Yeah but the other side of the coin might be that you would be crapping your pants repeatedly each day and unable to leave the house without a diaper, pain and become malnourised, anemic and weak. Is that better than what you're dealing with? I understand that it's not IDEAL having an appliance but it's better than some possibilities. Maybe you forgot what it was like to live with illness or maybe you weren't that sick? If so, why did someone operate on you? I don't know. I am sorry you're unhappy. You seem to have a lot of ups and downs. Do you take anything to regulate this?

Maybe you need a break from the virtual world. Find something, anything, offline that interests you, and pursue it. When I was at my worst I found that volunteering to help those who were worse off than me, really helped my depression.

Sue

I had to think about a bag when my colon was perforated. I was told I might wake up with a bag, and it was part of the consent.

Fortunately, they removed 12cm, and put me back together without a bag.

Still I think about how close I got.

I 2nd the thought of working with folks who have even more devastating disability.

NCOT, given your own psychological problems, I think you could be having just as serious psycholigical issues wit a jpouch, be it because of pouchitis, incontinence, or having to "go," issues that can happen with a minoroty of jpouchers just as a minority of ostomates have tech issues such as leaks or skin issues. I enjoy your writings, even with your occasional acid tongue (nostly in the past-- the new you is more self controlled), but I think the main issue for some ostomates is psycholigical not physical. Personally i dont "get" or buy all this whining about the ostomy being disgusting, barbaric or whatever. It is a plain and simple external pouch, rather flat and snug to the body (well, my lowish stoma position and ostomy boxers help) and invisible to anyone if you are not naked, tough as heck and imoervious to inflamation, replaceable and tossed... i dont see what the big deal is if one doesnt have tech issues. If you have tech issues, and i think you do, well, well, that sucks, but that is separate from the bugger issue I think that you have a mental hangup with being an ostomate-- agreed maybe a psycholigal trsting mught have caught that, though whether being in agony and perpetual steroids for crohns would have been the better choice is dubious, methinks. My career prospects as a nude male model are shot now, yes, but fortunately that was never in my sights. Peace.

Post Edited (Probiotic) : 5/20/2014 2:34:05 PM (GMT-6)

NCOT, I'm sorry you feel that way- but I feel like you read my post, then just had to respond with your own post how truly awful it is. You've stated numerous times that you have a whole host of other psychological roblems- barely able to socialize, few (if any) friends, somewhat autistic, living with your parents, no job, no hobbies, depressed, etc. I can't see that an ostomy is your sole reason for feeling like you do. After reading tons of posts on other ostomy forums, there are VERY few people who feel like you- the majority sound like me. I'm not saying your feelings are wrong, but to blame them on your ostomy is wrong. Heck, to blame them on anything other than your own chocies & decisions is wrong. Own up, take responsibility, quit whining. Not to be harsh, but that gets boring too.

Eva Lou said...
NCOT, I'm sorry you feel that way- but I feel like you read my post, then just had to respond with your own post how truly awful it is. You've stated numerous times that you have a whole host of other psychological roblems- barely able to socialize, few (if any) friends, somewhat autistic, living with your parents, no job, no hobbies, depressed, etc. I can't see that an ostomy is your sole reason for feeling like you do. After reading tons of posts on other ostomy forums, there are VERY few people who feel like you- the majority sound like me. I'm not saying your feelings are wrong, but to blame them on your ostomy is wrong. Heck, to blame them on anything other than your own chocies & decisions is wrong. Own up, take responsibility, quit whining. Not to be harsh, but that gets boring too.

This is an unacceptable response to someone who is suffering, and also very immature and snide given that you are an adult.

You want to accept your decision to get the bag and deal with the consequences, that's fine, but don't throw a b**ch fit and post insensitive things if someone doesn't feel the same way you do.

I hope you know the majority of neurotransmitters are located in the colon and has a discernible impact on mood and how we feel. Scientifically, her feelings are plausible.

People need to stop bashing on NCOT. Yes, she has other psychological issues prior to surgery, but she has raised a serious question here.

Surgery doesn't work all the time.

NCOT,

I'm fell sorry that you are very unhappy with your situation and I get that you need to blow off some steam from time to time. It's always good to blow off the steam.

Some may have difficulties understanding an others may just wish you find your way out of this emotional pain.

Sometime when we worry about others we can say stuff that doesn't sound nice... But I'm sure there are some good intents behind some the hard posts. I'm not saying this to defend anyone just so you don't fell bad and dislike because some posts.

I really wish you will some day get some emotional pain relief. I've gatthered from reading your posts that one big issue is you fell you have made the wrong decision. I'd wish I could go on as to why there are never wrong choices in life. But I would get lost along the lines and brobably get you boarded ;)

If ever you decide to seek psychological help I believe the first thing you should do is work on forgiving your self and understand you didn't make the wrong choice.

You may never found your way out of your unhappiness (I'm not the positive thinker type of person and more realistic) but know there will always be people that will listen to you.

Big biG HUG

Pluot said...
It sounds like what NCOT is proposing is that she should have been declared mentally unfit to give consent for medical procedures (due to depression/anxiety?), so even though she gave consent for a colectomy, it should not have been performed.

Interesting point, but nah, I hadn't taken it that far in my mind.

I was thinking more along the lines of cosmetic or, more controversially, gender reassignment surgery patients who have to have counselling beforehand. It is, I presume, possible for them to be declared mentally unfit for surgery, but in these instances they tend to desperately want surgery. I'm no legal eagle, so I don't know what their rights are if they are denied; whether they can appeal, find another surgeon who will agree to operate, or whatever. I wouldn't go as far as overriding patient consent, so that hypothetical scenario of a situationally depressed person with UC being turned down for surgery wouldn't come about.

But I am convinced that counselling would be a good idea before any elective, permanently disfiguring surgery: that certainly goes for having a permanent stoma. However, the counselling should be rigorous and not half-assed. If it's just going to be mushy, feel-good crap, then it's not worth it. Ideally, it would identify those most likely to have psychological issues with a stoma.

Because if there's one thing I am sure of and it's this: I am not alone. I am not even in a tiny minority. I suspect there's a large number of ostomates who feel the same way as I do, but would feel too embarrassed or unwelcome to partake in an ostomy community. Basically us ostomates are expected to put on a brave face, to see the silver lining, to be grateful for our lot. Well, I don't 'do' putting on a brave face: miserable face, yes. Brave face, no. Sod that. There are times when putting on a brave face is admirable, but it can also be a cowardly act.

I have, at various times, felt every negative emotion under the sun towards my stoma. I have also felt a sense of pity towards it: it is not a living thing, but talk about being forced into a desperately unnatural role. The small bowel was never meant to be protruding out of your stomach; I instinctively feel this.

Anyway, as ever, I'm wandering far off the beaten track. Back to the original topic, I do think colectomy can have a profound effect on some people (quite possibly for the neurotransmitter reasons Guardian mentioned). If we can recognise the importance of counselling before cosmetic surgery, we should be able to recognise the importance of it for other types of elective surgery as well.

Thanks, everyone, for your replies. There were some interesting points made. @Bad gut - Nah, a large intestine transplant has never been done. The large intestine isn't considered 'necessary for life' (insert expletive here). It is also a highly vascularised organ (lots of blood vessels), which presumably would make it difficult to attach. A few small intestine transplants have been done, though, if you're interested.

Er, I will answer other people's questions tomorrow if you really want to know... but you probably don't :-/

Hugs back to the ones who gave me hugs. *hugs*

And now I've finally knackered myself out. *collapses*

NCOT, I'm sorry for your pain, your loss and your continued struggles. I appreciate reading your perspective on surgery. It's a reminder for all of us that surgery is not without its own risks and own complications, or "adjustments" to life. I believe one has to be in the right mindset to take on the struggles of surgery just as they need to be to take on all the struggles that ibd throws at us. It sounds as though you have a lot on your plate, too much even, and perhaps you don't, at this moment, have the strength to deal with it at this time. I truly hope that you get the support that you need and one day you can slowly but surely make peace with your situation. Be kind to yourself. *hugs*

NCOT...I feel so sad for you whenever I read your struggle to accept the stoma.
To be honest, I really don't have a clear understanding about all the surgery related terms. I know its very much needed with UC diagnosis but beyond words I am scared DD going through it.
I always read the postings related to surgery though I don't have the courage to browse and understand.

Whenever I read your postings ,I think you are basically very careful person who watches all your actions and due to circumstances you were forced to do something without long thought. I feel, more than the stoma itself, you regret your decision taken in an unclear mind set. You feel somebody misguided you. Your anger/irritation is expressed towards the stoma as it is a permanent part of your body.Being part of your body there is no way you can forget it. So it became a constant reminder of that quick decision.
You have tried all these years to accept your stoma with no positive change. I know I will also have the exact same feeling like you. I have read that you tried depression meds but not much results.

Not to persuade into anything..and I admit I have no idea about your personal beliefs..just out of pure caring feeling-Forgive me if I am crossing the limits...Have you tried any religious retreats? OR meditations? If not just look into it....None of the worldly medications can heal one's hurtful mind.I assure you will be amazed to find the new You!!!I hope I have not offended you or anyone by saying this....But for sure it will give you some positive feelings...

Thank you both.

Still feeling an unholy combination of guilt and bitter anger. I keep reading story after story of people eventually reaching remission, in circumstances where remission seemed unlikely. I thought I had no hope of remission, which is why I booked surgery in the first place, but in reality I was a coward. If other people are happy with their surgery choice, that's fair enough - I've no qualms with what other people decide to do - but, personally speaking, there were further choices beyond the biologics for me and I failed to pursue them, even though I had my GI's blessing to. Heck, if I'd held on, Vedolizumab will be coming out in the UK next year.

It probably sounds dumb, but I just can't help wishing my surgery had been an emergency one, because then it would have absolved me of all responsibility and guilt. I'm still a coward, not wanting to live with the consequences of my bad decisions (and there have been so many of those during my life).

@Bloom93 - Well, most of the time surgery is not needed for UC. If your daughter is in remission, that's already quite encouraging, since the people who have surgery are often the ones who never got into remission. But if she does ever need surgery, then she will probably have an internal pouch (called an ileo-anal pouch or, more informally, a j-pouch). This pouch is created from the last 2-3 feet of the small bowel and is formed into a makeshift 'rectum' (since the original rectum will have been removed). This bypasses the need for a permanent stoma. A stoma is where a part of the bowel is brought out through the stomach and formed into a spout through which waste comes out: you wear a bag to collect the waste. However, as part of the creation of the j-pouch, UC patients usually have to have a temporary stoma for a few months.

I can't have a j-pouch due to Crohn's disease, so I have my stoma for life. The stoma is named after the part of the bowel it is formed from, so an ileostomy is formed from the ileum and a colostomy formed from the colon. A loop ileostomy is usually temporary, while an end ileostomy is usually permanent: they are constructed differently.

The surgery terminology can be horribly confusing, so I hope this helps at least a bit.

As for a religious retreat, the question did not remotely offend me: I'm afraid I am not religious though and hold no religious beliefs. However, I do rather like the sound of a retreat.

@Chantrelle99 - I literally couldn't agree more with your post.

*sees time*. Oops. Goodnight folks.