Stoma = Depression

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heameljon

Joined
Nov 30, 2011
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So I was visiting this site very frequently pre-surgery and haven't been back since my colostomy in February. I hate my colostomy, to the point I think I might have some minor depression issues. Before the surgery I was visiting and reading posts to learn about colostomies and what to expect and so many people felt so much better after their surgery that I didn't want to be a bummer and come on here and say how much I hate mine and how much more I hate it as time passes. My Crohn's is still flaring, I have had a pain in my abdomen for two weeks now, joint issues, I don't eat, the stoma is difficult to deal with, and the fistula's I have aren't getting any better. A couple of months ago when I asked my surgeon about reversal surgery once the Crohn's has calmed down he told me I needed to weight the pros and cons to making the colosomy permanent. It has been four months since the surgery and I just hate life. I used to do so well with the Crohn's and now all I feel like doing in crying when I think about the stoma and Crohn's. My doctor has me on Humira and now I am going to be starting Methotrexate - so I get 6 shots a month.
 
I am so sorry to hear that you are feeling this way. Do you know what it is about the stoma that is making you feel like this? Is it practical difficulties or self- image? If it is the former, there are people here who might be able to help. If it is the latter, I can sympathise very much with you. I took a long time to come to terms with having an ileostomy and still, 13 years later, have my down times but, on the whole, things do get better.

Please let us help.
 
I think a large part of it is that I am still having problems with the Crohn's and the fistulas. Maybe if I was feeling good, not in so much pain, and on the road to recovery I wouldn't resent the colostomy so much. I was given the impression going into the surgery that it was going to be reversed and then to have the surgeon tell me that I needed to consider making it permanent was a big hit for me.
The first two months I cleaned a lot of poo up off the bathroom floor, I have learned to change my device in the shower but it still bothers me that I "poo'ed" in the tub. I have learned to change the pouch liner sitting down in case I poo and I have learned to carry extra underpants with me. No matter what or when I change the device it always seems like it knows when it is naked and that it thinks that is the best time to void; it did it the other day when the doctor took the pouch off to take a look. I have a lot of OCD issues, I am not Howie Mandel bad but I have my own issues with how clean things are. I always feel dirty, I always think I can smell poo. We didn't have a lot of options for stoma placement so it seems like every pair of pants or skirt I try on falls right on top of the stoma. I guess regarding image it has created a few intimacy issues, I don't like to be naked around my husband but ultimately when we have tried to be intimate it seems like the pouch gets in the way. I recently bought a box of the 7 inch pouches thinking that might help with that issue.
 
Taking your last point first (because it is so important), I understand how you feel and you'll find that a lot of other people here do, too. Have you looked at all the ostomy covers and underwear that are available. Some of them are downright sexy and there are quite a few threads in this Stoma Subforum that discuss places that you can buy them. It's a bit late here now, after midnight, but tomorrow, if no-one else has already posted them, I will look them out for you.

As your Crohn's gets more under control, I think you will find that your output does, too. I have an ileostomy, but I am sure that other colostomates will come on and talk to you about that. And other people's stomas seem to deliberately play up...they have a mind of their own (just ask Terriernut about Stan). I find that the best time to shower (I am retired, so I have the luxury of choosing that time) is mid-morning when my stoma is quietest.

Again, I can sympathesize with the pants top issue. I now don't even look at a pair of trousers unless the sales woman can assure me that they come right up to the waist, but you will find that other people have different solutions.

My thoughts are with you. It's not always easy to come to terms such a major happening in your life.
 
Hi Heameljon

I was just about to leave the forum when I saw your note, and just HAD to respond because you described my feelings to the "tee". I was in the exact same spot of loathing my stoma...mine came a bit earlier...at the three month mark. I had a HUGE meltdown and couldn't believe that I was PERMANENTLY attached to the most loathesome thing in the world: the stoma. I felt incompetent at changing the appliance, I hated the smells and mess when I changed (my stoma seemed to also be malevolent and would save some missiles to lodge all over the bathroom walls as I changed...ugh!), and I felt super unsexy and unsexual. It always felt like I had a stone in my pocket, and like you, I felt that all the styles of clothes that I liked or were more flattering on me were not working with the stoma.

I don't know what happened. A few weeks after my 'meltdown,' things shifted. I expanded my style horizon to consider clothes I'd not considered previously. I bought smaller bags. My output also slowed down and I learned when my stoma was less active (I have an ileostomy and figured out that about an hour after I woke up and before eating breakfast, I would change my appliance).

Unlike you, I didn't have the challenge of Crohn's being present, although I experienced complications from surgery and needing home nursing for the first five months. I'm sure it must be quite disheartening to not only be told your surgery is permanent, but also to continue battling Crohn's.

All I can say is "hang in there." And know that you're not alone in these struggles...

Warm regards,

Kismet
 
I know exactly how you feel heameljon, A few years back I was going in for surgery because I had a hernia and I came out with a god danm bag. It was not expected and I was piss mad!!.

My doctor reassured me it was temporary and it was necessary in order to heal correctly. The first week I was in the hospital and the nurses wanted to change the bad I would ignore them and be so so so embarrassed. After a week or so I got to terms with myself and started to take care of myself. Then when I got home I had to start to get to terms with my gf. I was ashamed showing my stomia and I dreaded the time when she would want to make love. She had to virtually force me to do it the first time. It's certainly not easy.

After those few bumps everything seems a bit easier, At one point during the act the bag exploded and poo was everywhere the smell was so bad. My gf just laughed and we finished in the shower. Even today we still talk about this accident and laugh about it. I have a good GF so it helps. All this to say don't be ashamed of who you are. Like it or not it's there and if other people cannot accept that well they are not your friends.

As for changing the bag, I had the same problem you had. The stomy would feel it right when you open the thing it would start spewing everywhere. So I decided that when I changed the bag I would eat dinner early and I would change it the next morning. I would be empty and the risk of erupting would be minimal. I suggest you try that.

I was lucky enough that after 3 operations the bag was finally removed. I am back with only holes where they are supposed to be.

As for your doctor saying you should make it permanent, well I know some people here love their bags, but my opinion is if we need to get me a bag it's because I’m going to die next week. Not before. I would rather suffer pain unimaginable then get another bag on me. But that's just me.

Good luck to you.
 
Hi Heameljon
I totally sympathize. I literally begged for my Stoma as I desperately needed the relief it would provide. I did not realize at the time how profoundly it would effect my life.
I too have really struggled with it, and this has been exacerbated by active disease and a very very long healing time. I have been dogged by anxiety and depression - which I have never before experienced.
It has been the most difficult experience of my life - but I have survived. I'm heaps better with it now. I sometimes even forget I have it. Getting the disease back under control with Humira has really helped.
I've also had lots of false dawns. I think everything is better - next thing I know - I have to spend days resting in bed as I've picked up some bug.
You're not alone.
Hang in there.
I eventually turned a corner.
I hope you do too.
 
I am honestly not surprised that you are having a bad time dealing with the stoma if you feel no better for it.

I am one of those that loves my stoma but I think this is due to 2 reasons. Firstly I knew I would be getting mine permanently, so I really had to no choice but to embrace it. I knew it would make things much easier mentally for me. I was always kind of glad that I would be getting it permanently for that reason, even thorough it probably sounds a bit weird.

Secondly, I don't have my colon anymore, so I no longer have active crohn's. This means I'm really just like a normal person. My stoma therefore kind of represents my freedom. It's given me all of that.

If it helps, leaking and emptying problems gets less than less as the time goes on. I would also prefer my bag to leak than I poo myself. I don't really know what to suggest in regards to your stoma though. I do think that if you felt better it would be easier to cope with it and see it as your friend rather than your enemy. I do wear an elasticated waist band for my stoma. It's great. It holds my bag in place, supports it and hides it. I can easily forget about my bag now.

I really hope things get better for you though! Don't be afraid to come here. Everyone is here for support after all! Hugs!
 
I had an emergency ileostomy and intially i refused - it was only when told it was stoma or death i agreed.

I was so depressed when i woke up and for the first few weeks refused to even look at the bloody thing - however i was then put on a quite high dose antidepressant which made a massive difference.

Whilst i had Kermit i was constantly waiting for the reversal but i can honestly say i regret the reversal and have been constantly ill since and if i was offered another ostomy i would take it.

I had loads of bag covers which helped my self-esteem and i developed a very sick sense of humour which helped when my stoma was squirting through bag changes!!
 
I too believe it is your continuing ill health on top of having a stoma. I too am having to do battle with my colon still, as only my sigmoid was removed. Everything else is still there to torment me! I am actually going to the Dr in two weeks for an antidepressant. See, it happens to alot of us.

If your stoma had given you health, I have no doubt you would be feeling better about things, but as it is you are dealing with a heap of trouble. That is enough to put anyone over the edge.

I can help with some clothes ideas: www.forever21.com has some lovely blouses. As for trousers, try jeggings. Intimacy I'm steering clear of myself. Not with the hernia from hell.

You've had some good advice about the problems with changing and poo'ing. And yes..the little bastards time it perfectly. What you have to do is know your stoma. I do mine in the morning after Stan has finished. If I have to get up 3 hours before work, so be it. But I dont eat, just drink two gallons of coffee. Then shower and or change when Stan is done. Using a two piece system has saved me SOOO much time.

As for the Dr saying make it permanent. I think it truly depends on the state of your disease. With the issues you are having, it may be they want to wait quite a while before reversal. What I wish for you is a good long remission. Dont be afraid to get some help with the anxiety and depression. If a tough old bird like myself has to, anybody can.

I wish you well. :hug:
 
I took Humira and Metho for 2 years until my Colostomy 8 weeks ago. The last month I took Metho in pill form, I just couldn't deal with giving myself the shots anymore, I had so much anxiety built up around them, I dreaded Tuesday afternoons.

Might want to ask the Dr. if you can take the Metho in pill form, 1 less shot a week.

I can't offer much advice in the stoma department, I am only 8 weeks in and really, it has been smooth sailing until this week when it prolapsed with a perastomal hernia and I had to go to the ER. Now I get to wear this girdle thing around my abdomen to hold it all in.

Personally, I wait at least 2 hrs after eating to change my gear out. I also change in the shower, I bought a bunch of cheap dark colored wash clothes to use in taking everything off, washing, and drying. Despite losing weight I also bought some looser fitting shirts to mask the thing and be more comfortable. Mine does not depress me, but I am self conscious about it. I always think everyone is staring right at it, my girlfriend constantly tells me it is all in my head.

Sorry to hear you have had such a rough go with it. I have found talking to others that have had one has helped me deal with it greatly.
 
Thank you everyone for sharing your stories and suggestions, makes me feel a little less freakish. And some of your stories are quite a lot worse than mine so it puts things into perspective.

CrohnsHobo - I have been taking Humira and start taking Metho next week. I currently dread Humira Saturday so now I get to add to that whatever day Metho will fall on. I hope the hernia gets better soon.
 
I am just going to add one extra bit of advice/suggestions. I actually made a couple of lace wraps to wear for intimate times with my fiance (they are really for me as he could care less, and while I am in the happy with my ileostomy camp....I absolutely hate the damn thing flapping around). So I went to the fabric store and bought some elasticated lace, it's about 4 inches deep. I sewed two strips together to cover the majority of my abdomen, and then I sewed it up the back. I can just slip it on like underwear under my clothes and voila, no floppy bag, some cute lace wrapped around my body and I'm ready to go...so to speak....lol I made 4 different Colours to go with my bras/ undies. Also I wear a belly band (same idea but just cotton t-shirt material for everyday use and they come in like 12 different colours). I order them from ebay, @ like 5 for 30$ I wouldn't bother sewing these myself since they are so cheap. The name is actually Bella Vonna Belly Bands on eBay.

I don't know if this is helpful to you at all but I just didn't like any of the Ostomy covers etc... That I have seen so far. If you have any questions feel free to ask.

I hope that you can get your crohns symptoms under control.... I agree that most of us who love our bags....love the freedom from the symptoms that came with getting the bag and you didn't get that positive reinforcement so really I think that it's very natural what you are feeling.

All the best,:hug:

Kat
 
Neko76 -- I just ordered some of the Bella Vonna Belly Bands that you recommended. I've got a few formal events coming up and wanted something other than the bag cover that I've been using. I'm excited to check them out!

Thanks for the suggestion Kat!
 
I would like to urge anyone with a stoma who has issues about their self image, to please read this - it is a website for Jessica Grossman, who has had an ileostomy since 2003:

http://ajani.ca/blog/2009/10/10/social-campaign-uncover-ostomy/

Jessica Grossman–an undergraduate media student at my former university–the University of Western Ontario, has recently launched a great medical and health-related social campaign entitled “Uncover Ostomy”, which educates the public on the social issue behind life with an ostomy.

In addition to being very beautiful, Jessica is incredibly brave to launch a campaign of this nature, including images of her and her ostomy.
 
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Like Fruitloop I had an emergency ileostomy at first i refused it but I didn't know how ill I was the surgeons told my parents it was either an ileostomy or death. I only found out the next day that the op was too save my life. I'm so grateful that I'm here and I've got my life bk now. Before the illness controlled my life but I still hate it. We've all been through a lot I suppose it's like marmite you either love it or hate it! I think it doesn't help that I didn't have a choice. Hope you feel better soon xx
 
heameljon said:
I think a large part of it is that I am still having problems with the Crohn's and the fistulas. Maybe if I was feeling good, not in so much pain, and on the road to recovery I wouldn't resent the colostomy so much. I was given the impression going into the surgery that it was going to be reversed and then to have the surgeon tell me that I needed to consider making it permanent was a big hit for me.
The first two months I cleaned a lot of poo up off the bathroom floor, I have learned to change my device in the shower but it still bothers me that I "poo'ed" in the tub. I have learned to change the pouch liner sitting down in case I poo and I have learned to carry extra underpants with me. No matter what or when I change the device it always seems like it knows when it is naked and that it thinks that is the best time to void; it did it the other day when the doctor took the pouch off to take a look. I have a lot of OCD issues, I am not Howie Mandel bad but I have my own issues with how clean things are. I always feel dirty, I always think I can smell poo. We didn't have a lot of options for stoma placement so it seems like every pair of pants or skirt I try on falls right on top of the stoma. I guess regarding image it has created a few intimacy issues, I don't like to be naked around my husband but ultimately when we have tried to be intimate it seems like the pouch gets in the way. I recently bought a box of the 7 inch pouches thinking that might help with that issue.
Click to expand...

Hi heamiljon,

Here is another thread that may help, if you haven't seen it already:

http://www.crohnsforum.com/showthread.php?t=38604

Let us know what kind of pouch you prefer. I don't like the shorter pouches because I find that they are even more noticeable under my clothes- they fill up faster and that causes the pouch to bulge up higher than a longer one. But being a 44 year old male is probably much different- just looks more like a beer gut. :biggrin:

Yes, these stomas have a funny way of knowing it's time to void whenever we are changing appliances. I always remove the old one while taking a shower and then quickly dry and put a new one on. For me, it's just part of the routine and yes, definitely annoying.

I hope your condition improves soon! But if you do end up having permanent ostomy surgery it's by no means the end of the world. It is an adjustment of course and that part can be challenging. But you'll soon become an expert at it and once you do, I doubt you'll have any regrets or resentment. This board will certainly help make any adjustments easier!
 
I have one suggestion around the timing of changing your bag. As soon as you wake in the morning, have a shower, then immediately change your bag. That way, you are clean and fresh, have a nice clean and dry bag and since it will be probably 12 hours since your last meal there is a good chance your stoma will not be producing output. I had an ileostomy and this worked pretty much without fail for me so hopefully should also work for your colostomy.
 
What about taking Imodium before you change it then it is less likely to activate coz it slows down the output. I use that before I change it and 45 mins before each meal as well. Works wonders for me. As for the body images I do sympathise I'm scared I won't be able to get in a relationship coz of it and if I do I do I'm scared about intimacy with it. I have low self confidence any way and hate my body. Hope this helps you big hugs and good luck xx
 
I know exactly how you feel! Oh do I!! When I went to the surgeon and he said he wouldn't do my reversal I started crying right in front of him and said you can't tell me that. It was terrible! When I walked out I threw all my paperwork every where luckily I had my best friend there to help me collect myself. At that time I was bleeding ALOT I still had my rectum and 2 inches of colon left so I knew I still had problems I mean I was still using the bathroom and still had a stoma. I am very thankful for having a stoma it saved my life and did some what give me my life back but in my mind what was the point if I'm still dealing with the same issues I myswell have a normal body if I have to deal with same symptoms so what was the point. I lived everyday thinking I would eventually have my takedown I didn't buy new clothes to fit my new body to encorparate my stoma. Mine is in the same place as you so wearing jeans was so uncomfertable I lived in sweat pants. One day I was at the mall and this lady at a store I was buying something I don't even remember but she said OMG I was like what she said stand back and I did she said I never thought to wear pajamas to the mall!! and was going on and on. I wanted to cry and lift my shirt up and say yeah and walk out. But I just smiled walked out and thought you know what I'm gonna live for the now moments so I'm gonna splurge and buy new clothes to fit my NOW body. I can't change having this stoma so I have to learn to live with it because it's who I am. If nobody likes it they can kiss my butt and everything that comes along with it (smell,poofy bag looking like I'm pregnant,sweat pants if thats what I feel like). I always look at it and think gosh I can't believe this happened to me, I can't believe this is my body, everyday is a struggle to love my body but then I think how wonderful my body is to be able to rewire and still live and keep me alive. I do it for my kids,mother,aunts,uncles,friends,loved ones. So this stoma keeps me alive so I can see my loved ones and I do it because I love them so much to keep fighting and be able to live another day out of the bathroom and spend it with them and to save my life. So in the mean time I dress myself when I'm feeling bad. I've noticed maternity pants helps me. I've never been a dress person but have started wearing them. I use those fancy belts to cinch the top of my waist. Also I play up my legs by wearing sexy pantyhose with designs. ( I have short legs:( ) But hey got to work with what I got! As for smell I go through so much perfume BUT I do think that our noses become stronger than before so I think it's just us ostomy people or at least I keep telling myself that lol. I think we are special because we did what we had to do to fight for our lives we are strong as hell and god loves us to give us other ways to survive using our own body parts. So this is why I'm grateful for my stoma but excited to start a new chapter with a jpouch (hopefully).
 
Also I have added st johns wart to my vitamins :) It helps me. Maybe try that.
 
One of things my docotor told about the decision to have an ileostomy is that the patient must "want" to have it. It's a very difficult thing to decide, andall of your concerns and feelings are normal. All of those concerns would make it difficult to be happy after surgery, and it's really good that you are considering all these factors.

I hope the jpouch surgery works for you! Whateve dircetion your recovery goes in, I hope you maintain the positive outlook an do not let anything get you down. Jpouch surgery is an adjustment too- you have to develop muscles you don't normally think about so you may have some control issues at first. Diet changes certainly help maintain control though, or just add a little immodium.

Best,
Hobbes




maria said:
I know exactly how you feel! Oh do I!! When I went to the surgeon and he said he wouldn't do my reversal I started crying right in front of him and said you can't tell me that. It was terrible! When I walked out I threw all my paperwork every where luckily I had my best friend there to help me collect myself. At that time I was bleeding ALOT I still had my rectum and 2 inches of colon left so I knew I still had problems I mean I was still using the bathroom and still had a stoma. I am very thankful for having a stoma it saved my life and did some what give me my life back but in my mind what was the point if I'm still dealing with the same issues I myswell have a normal body if I have to deal with same symptoms so what was the point. I lived everyday thinking I would eventually have my takedown I didn't buy new clothes to fit my new body to encorparate my stoma. Mine is in the same place as you so wearing jeans was so uncomfertable I lived in sweat pants. One day I was at the mall and this lady at a store I was buying something I don't even remember but she said OMG I was like what she said stand back and I did she said I never thought to wear pajamas to the mall!! and was going on and on. I wanted to cry and lift my shirt up and say yeah and walk out. But I just smiled walked out and thought you know what I'm gonna live for the now moments so I'm gonna splurge and buy new clothes to fit my NOW body. I can't change having this stoma so I have to learn to live with it because it's who I am. If nobody likes it they can kiss my butt and everything that comes along with it (smell,poofy bag looking like I'm pregnant,sweat pants if thats what I feel like). I always look at it and think gosh I can't believe this happened to me, I can't believe this is my body, everyday is a struggle to love my body but then I think how wonderful my body is to be able to rewire and still live and keep me alive. I do it for my kids,mother,aunts,uncles,friends,loved ones. So this stoma keeps me alive so I can see my loved ones and I do it because I love them so much to keep fighting and be able to live another day out of the bathroom and spend it with them and to save my life. So in the mean time I dress myself when I'm feeling bad. I've noticed maternity pants helps me. I've never been a dress person but have started wearing them. I use those fancy belts to cinch the top of my waist. Also I play up my legs by wearing sexy pantyhose with designs. ( I have short legs:( ) But hey got to work with what I got! As for smell I go through so much perfume BUT I do think that our noses become stronger than before so I think it's just us ostomy people or at least I keep telling myself that lol. I think we are special because we did what we had to do to fight for our lives we are strong as hell and god loves us to give us other ways to survive using our own body parts. So this is why I'm grateful for my stoma but excited to start a new chapter with a jpouch (hopefully).
Click to expand...
 
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This has been such a great thread to read! I have been wanting to actually lobby for an ileostomy as I am just TIRED..tired of bowel obstructions,bowel resections,wondering when the next one is going to strike. I was recently told that for all 6 of my resections I have a surprising amount of bowel left and by barium enema it doesn't look bad.. But let me tell you..it feels bad! My whole life revolves around the toilet and whether to eat or not to eat..it's just devolved!
So I wanted to say thank you all for posting your struggles and triumphs with having a stoma. It gives me perspective. Oddly, if it meant I could have less pain and a more normal life, I would be the first in line..then I would probably have to go through the whole process of grieving and becoming used to a new revised me!
I'm so sorry that you are struggling with your stoma..I know you probably had high hopes that you would feel better..and I so hope you do soon! Have you thought of maybe talking to the doctors about anti depressants for even a brief period?i don't know..it may help get you over the hump..
I wonder too if when any part of our intestinal tract is removed if this affects the serotonin and dopamine levels on our bodies? I have read that we have so many of these receptors in our gut..makes sense that taking part or almost all of it out would affect our neurotransmitter levels..just a thought
 
Hobbes not if its a case between life and death you don't get a choice like mine was my bowel wasn't doing me any favours what so ever and it could of burst at any time which could of killed me. I hate mine but I'm so grateful to be here it saved my life and it has given me my life. xx
 
Hobbes650 said:
One of things my docotor told about the decision to have an ileostomy is that the patient must "want" to have it...
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There are, however, many of us who have had to have a stoma - the choice has been taken out of our hands either in an emergency situation or because things had deteriorated so badly that it was stoma or no quality of life at all (or even no life at all).

I, for one, left it far too late because I didn't "want" to have an ileostomy, so the amount of damaged tissue that they had to remove from around my rectum and anus was the size of a large man's fist. This meant that the recovery time was very long - it took 7 months for the flesh to grow back in and fill the gap.

But I have come, as have many Chronies, to accept my stoma and recognize that it has given my life back to me.
 
Hi Susan! Exactly, and I was one who didn't have much choice as well. My doctor was saying that at a time when there was no emergency situation, but not much hope things were going to improve otherwise. My choice was a little different since I was choosing the ostomy or keep trying to fix a jpouch. After a few years and many, many problems with the jpouch I had the ileostomy. Looking back I certainly waited too long. And now that I have been treating a flare up of Crohn's, all that time spent fixing problems was pointless. In fact, now that I have Crohn's it could be easily argued that many of the problems I had with the jpouch were caused by the disease (sorry to digress).

I didn't want to have an ostomy for all of the same reasons. Do I look back and wish the jpouch had worked? Yes and no. Yes in the sense that I would have not spent years with so many problems and surgeries. But in terms of quality of life, not really. With all of it's "faults", my quality of life with an ileostomy is the closest to normal I've ever had. I look back and wonder why I fought so hard against ileostomy surgery, but that's with 20 years of hindsight. All else being equal, the decision about surgery is not easy but it is easier when you are 100% committed to your choice. Either way, the end result of being pain free is awesome, and in that sense there really isn't a bad choice.

Like you I learned to accept it. I always appreciated that the stoma saved my life, but that didn't mean much at first. Now it's normal, and i see it in the same way as when I wore glasses- something you have to do, but no big deal.



UOTE=Susan2;504757]There are, however, many of us who have had to have a stoma - the choice has been taken out of our hands either in an emergency situation or because things had deteriorated so badly that it was stoma or no quality of life at all (or even no life at all).

I, for one, left it far too late because I didn't "want" to have an ileostomy, so the amount of damaged tissue that they had to remove from around my rectum and anus was the size of a large man's fist. This meant that the recovery time was very long - it took 7 months for the flesh to grow back in and fill the gap.

But I have come, as have many Chronies, to accept my stoma and recognize that it has given my life back to me.[/QUOTE]
 
having the choice taken away from you is the thing i really disagree with, as ive walked out of emergency surgery twice now, after the surgeon telling me id be left with a bag, when all thats needed is a " simple " resection at an earlier op site between the large and small bowel( hemicolectomy) which has narrowed, i have actually asked for it to be stated it my records that im never to have a stoma, as im not the person to put up with any of the things that go wrong with it,pains , bursts, the after effects etc, and the thing of living in misery to keep other folks happy, remaining relatives etc, at the mo im waiting on an appointment to se the consultant to see if my treatment at this hosp is at an end and to look somewhere else, hope this doesnt offend folks that are happy with their outcome of surgery concerning stomas, but your all stronger folks than me
 
I'm sorry that you feel this way. I have had a ileostomy for 13 years and I certainly don't live in misery - far from it, in fact. There are, I admit, some problems from time to time but nothing like the misery that I was living with before I had the proctocolectomy. I have tried to develop strategies for dealing with the problems (often after the event, unfortunately, but then I'm more ready for the next time) and not to dwell on what might possibly happen in the future.

I lead a very full life - a lot of environmental work, singing in a classical choir, lunch with friends (who are very understanding about the type of restaurant that I need), at least 20 visits a year to the theatre and orchestral concerts and travel both within Australia and overseas. I have just come back from Botswana and since I got the ileostomy bag I have also travelled to Kenya, Tanzania, Egypt, Jordan, the Galapagos Islands, New York/Boston/Cape Cod, Britain, France, New Zealand, Japan twice...

There is life after an ostomy!
 
Agree with Susan2. In my mid 40s now and have had my ileostomy for 25 years. I have never had any pain with it, nor has it burst. There was certainly a learning curve initially, but most of the challenge was mental- and that goes away. Having a "life of misery" was my life before the surgery- lots of pain, zero control over when and where I go to the bathroom, prednisone side effects, very thin and weak, etc... Life with an ileostomy is not miserable, and thinking it will be is just ignorant. I'd rather have a full life than be incontinent, in pain an miserable.
 
I too am certainly NOT miserable with my stoma. Far from it! Even with my hernia. I am able to work full time, travel, enjoy life. Before, I was a slave to my bowels all the time, day and night! I couldnt go out to dinner, never accepted invitations from friends. Now, life is very good!

I can only think that you have to be alot sicker, or almost dead perhaps, to understand where we are coming from.
 
im not having a go at folks that do have a stoma, lol, im just saying its not for me,, as for being ill enough, the doctors and surgeons seemed to think i was on taking me in for emergency surgery twice, and as being "ignorant" i take it you mean being unaware of the situation? as seeing a family member struggling with even a temporary stoma, and calling it the worst thing,,, and from a good deal of info from folks in here on another thread" what they dont tell you? ,, i came across even more info, but the main reason i am so against a stoma( for myself) is simply believing its not needed at this stage
thanks ,
 
I hope so after they do this next op :( don't want it really how hard is it mentally and emotionally? I found it really difficult after the first one hoping this will be easier... Doubt it tho xx
 
I'm thinking it will be easier. Simply because you are in a much better place health wise. You may not be 100% yet, but you are getting better.

You are young (what was it...21?) and you can recover faster than others. Dont get overanxious, anticipating the worst. This will not help you! I realize easier said than done. Have you tried the councilling yet? It does help! It certainly helped Michelle (Misty Eyed). Dont let thoughts keep spinning in your mind. Try cognitive behaviour therapy and affirmations to keep calm and control the mental chatter.

We are tough...tough as hell. We ALL have inner strength and fortitude. You do as well....just pull it up from within, trust me...it's there.
 
Yeah I am much better health wise and not at deaths door yeah I'm 21 a lot to go through so young. No I couldn't find anyone with the counciling thing I'm afraid. Don't get me wrong my life is so much better now with it its just my mental atititude. Thanks for this how long you had yours if you don't mind me asking xx
 
We are ALL so much stronger than we give ourselves credit for! Positive thoughts will definitely help. Believe me, I know how tough this is. I had to go on antidepressants and meds for anxiety. When I was at my worst, my brother had words of wisdom that really hit home for me. He said that nothing lasts forever, not the good stuff or the bad stuff and this tough time will pass. He was right and things will get better for you too.
 

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