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Every day I have a new thought for coping with having a stoma

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Posted 10/1/2011 12:10 PM (GMT 0)
Many years ago I waitressed in a diner for a summer. This old woman came up to me and ordered a hamburger and asked me to scrape the seeds off the bun, and told me that she had to "go to the bathroom in a bag". She patted her side, where there seemed to be a large, long vacuume cleaner bag (that really was a long time ago). She was telling me about my worst nightmare.

When I learned I had UC in 1998, I never imagined it could become so bad that I would need to have my large intestine removed. When I learned that it is a reality for some people with UC, I said not me. Never. Never. That's never going to happen to me. My worst nightmare.

Now I'm living my worst nightmare and I'm wondering if it's not a kind of blessing, to be allowed to know that I can live through it and that while it has indeed been the deepest and roughest part of my life emotionally, I am getting through it without falling apart, or IT taking over my identity and life. So it's not the nightmare I feared, and in certain ways, I'm meeting aspects of myself I didn't know about before.

I have to look for things like this to feel alright, because at some level, after 5 months, and just a couple of months away from having a jpouch and no more stoma and bag, I know I am not adjusting and that I am still feeling traumatized.

Posted 10/1/2011 12:20 PM (GMT 0)
It took me almost 2 years to get used to life with a stoma as well but I am now in a happy place with it and know how much of a blessing its been to me as its given me my life back. Sometimes I wish I had the option to have the J Pouch but unfortunately its not gonna happen for me so I have to be happy with the hand thats been dealt to me. I hope all goes well for your J Pouch, take care
Doreen
Posted 10/1/2011 1:29 PM (GMT 0)
I think there is a power in having "the worst" happen and finding that the world doesn't end and you can deal (even if not perfectly). A big incident for me was a bit after diagnosis, when I had a huge accident in my friend's car; she was taking me home from getting fluids and was going to stay w/me when I took pred for the first time. I got poop all over my jeans and her car seat, and that was what I thought I'd rather die than ever do. She had young children and was completely unphased, said let's go upstairs, put my pants in the wash, cleaned the car, and acted like it was no big deal at all. I moved on.

Of course a stoma is a bigger deal than an accident ... but that's what resonates for me w/what you said.

We are often stronger than we think, and it's good to know that.....

I imagine that in some ways a temporary stoma is harder to accept...
Posted 10/1/2011 2:40 PM (GMT 0)
I hear people say having a stoma is a bigger deal than having an accident, and I don't think of it that way. I was very lucky and only had two small accidents, one in the hospital and one at home. Having accidents like I hear people talking about would havve sent me to surgery right away! To me, having a bag and surgery was actually less of a worry to me than having accidents!
Posted 10/1/2011 3:55 PM (GMT 0)
 

Bluegrass, Sommer, Andor,

Thank you for your sides about adjustments and acceptance. This is why the forum is so great, it puts your suffering in perspective. I often thought it was hardest for me because although I had UC and had to go through 2 rounds of pred, the last of which did nothing, I was not really ever very sick. I had mild flares, but developed a stenosis(stricture) that was febroid, in the colon. My doctor, who really is very experienced internationally in hospitals and research, said the stricture would shut down in a matter of time and I'd be in bbig trouble, or its cells could start changing and go malignant. It couldn't even be passed through at the last scope, and that's when he told me in quite a tone of voice that the colon needed to come out.

If I'd been suffering a lot up til that point it, then having a bag now would be a relief. It's not. My flares meant  a bit of dairreha but not what others here are describing, some blood but not dramatic, and a great lack of energy, none of that worse than the trauma of surgery, having my body turned inside out, etc.

But in the end we've all been through the same thing, haven't we. I'm feeling something like a kind of peace when I realize I've been to a certain kind of hell and didn't stay there, and that I know things about my body I didn't know before. Most of the day I forget about it, but there are moments, privately, alone, when I know I still have some feelings of horror about it. It's not having to deal with my poo differently than before, poo was never anything I got squirmish about, it's more about feeling mutilated.

I've even been telling myself a little coping fairy tale: the doctor had to execute the colon for attempting to murder me. Then the poor, innocent, unsuspecting small intestine was one day suddenly pulled out of the only home it ever knew, deep inside my body, and out into the open, where it had not choice but to continue doing its job (and brilliantly, I have to add), althought there was no long the colon as partner and it had to get used to being exposed to air a few minutes every day. And in the beginning, I, for whom it was living its life looked at it in hate and horror for many weeks, until I developed loving, tender feelings for it when I realized it was being so good to me. But in just a couple of months the stoma will have to go through another trauma and go back inside to do a new kind of job (which I am sure it will do just as brilliantly), but in the long run it will be happier on the inside of my body where it belongs. And then I hope we will live relatively happily ever after.

I've gained about 10 pounds since the colectomy. Not that I had lost weight and wanted to gain it back, I mean, I've been eating and drinking more , partly because it's so nice having no restructions, but also because I'm so freaked out about what has happened to my body that I am very simply getting myself fat. When I step outside myself (figuratively) to see myself neutrally, I see a person with an amazingly complex, unconscious relationship with her mouth and entire digestive system.

I could write forever about this but I'm late for a concert. Let's share coping strategies.

Posted 10/1/2011 5:46 PM (GMT 0)
B'dereh , there's a lot that's very beautiful here. I agree that it's much harder to accept/understand/make meaning when you weren't so sick before. I say I paid upfront.

Love your fairy tale. I started saying that my liver, heart,lungs, etc got together and voted my colon off the island....seems that my remaining organs work better now

Not so sure that 10 extra lbs is a bad thing going into another surgery. My surgeon said my recent one went better because I had gained weight

Summer, surgery never crossed my mind when I had that early accident...there were more, but not that bad. I held out and resisted surgery for so long... now I sometimes think I waited too long, but probably has been easier to cope knowing how many other things I tried.
Posted 10/2/2011 3:56 AM (GMT 0)
You wrote that beautifully B'Dereh, I felt very much the same way you did when I first had my stoma and mine was done as emergency surgery so I had no time to get my head around it, even though ultimately I knew it was in my future, I to had many accidents just like Summer but mine were frequent pretty much every day for me and I could not leave the house in the end, I remember pooping in my boyfriends car 5 minutes after we drove off and had to come home urgently for a shower and change, I sobbed my heart out everyday that this happened to me, thankfully he was great about it but it still hurt me it also happened when I went for a walk to the beach, at the shopping
centre, in my car , virtually everywhere I went. My life was so miserable and I just wanted to curl up and die as I could not bare to continue having accidents like that. Thats why for me life is so good now. I had to have extensive counselling to help me through and finally found that place of acceptance, I wish you so much luck for your upcoming JPouch surgery, please let us know how you go, take care Doreen
Posted 10/2/2011 6:28 AM (GMT 0)
Andorable I didn't have many accidents just 2 small ones one at home, one at the hospital. But I did worry about it constantly. And I worry about leaks of course too, but I figure if it leaks its gonna be on the front of my shirt and noone is gonna think, oh look poop. A lady told a story about how she had a leak at a ball game I think, can't remember for sure, cleaned it up and all, but the front of her pants were stilll stained, so she got a coke, put it in her lap and "spilled" it. That's what people would think with an ileo, I think anyway.

Bdereh I like your story, you could make a little phamplet out of it for new. Patients
Posted 10/2/2011 6:32 AM (GMT 0)
I want to add, you said you had a new way each day to cope, I find something new each day still that makes me glad i had surgery! And on the very rare occasion I have a woe is me moment I remember that, and that helps me cope, kind of like you are talking about.
Posted 10/2/2011 12:01 PM (GMT 0)
I think there are some days when I cope fine, when I'm busy or occupied with something else.

I was always afraid I would have an accident and was always obsessed with going to the bathroom before I left the house, and making mental lists of where toilets would be on the way to where I was going just in case (I was always good at that even before I ever had UC symtoms, and I knew where university buildings and libraries were, cafes where no one would notice if I just ran in for a minute).
But nothing awful ever happened to me in public. Once when I spent the night at someone's apartment and in the morning I hd to use the toilet around 8 times which must have looked weird.
Andorable, be thankful for having a boyfriend like yours. If I imaigne having an accident with any of the men I've known I don't know how they would have handled it.
And on that subject, I'm havig a hard time with my feelings as a woman, since I have the stoma. Like I shouldn't even think about meeting anyone,or if considering a date, wondering how and when I will tell the guy. And if it doesn't work out, then he knows something about me I don't want society to know. My body feels so different, like it's not entirely mine anymore, especially my lower belly where the incision is, and I would say only about 20% of the feeling has come back there. And with the stoma and bag my perceptio of my own body now is like there's an interruption in what used to be a flow, a cut-off point and even my sexuality has become a bit foreign to me.
The surgeon will not tell you about this part of the deal.
I think the reason why I gained ten pounds is that I feel like I've been turned into a kind of mutant sub-species monster and I'm expressing the monster feeling by making myself fat.
I know the doctor didn't want me to lose weight before the last two operations because I might need the fat reserve, so it might all just go away in December - January, but I'm impatient about not fitting into any of my clothes, jeans, etc. Don't want to buy anyhting new and going shopping for clothes at the moment is not fun.
Anyway, I'm sorrry both of you were having these painful incidents. It sounds though, like no matter how badly you felt about it, you kept the incidents separate from your own feelings about yourself, which is the biggest struggle with illness. I didn't want to identify myself with diarrehea, just like I knew a man who developed muscular distrophy suddenly as an adult, at around 40, and kept on with his plans in life and was very creative and productive, and never let his now very hindered and slowed ability to walk affect who is.
Posted 10/2/2011 4:02 PM (GMT 0)
B'Dereh -- I think it can be hard to find self-acceptance for a lot of reasons ... personal family history, lots of messages from school, the media, etc that we are not good enough as we are, not smart enough, pretty enough, etc.

I struggled w/these issues for many years before I was sick, and made progress... no question that that earlier progress helped me cope better w/ibd and the ileostomy. Also, I was single for almost ten years before I met my partner, and my illness has mostly happened at the same time as our relationship.... I had gotten to a point where I was OK w/being single the rest of my life, and approached online dating as "let's see what this experience is like" rather than fearing that people wouldn't like me due to my various flaws and baggage.

One thing that taught me a lot -- my parents were divorced and remarried a lot when I was an adolescent.... always thought that chaos was a big red flag for others dating me.....but then for my partner it was a feature, because she knew I would empathize w/her daughter, as previous people she dated had not. And that's how it worked out (she worried about having a kid and finding someone).

My point: everyone has stuff, and a lot of people worry about rejection. It's just not all about the bag, even if it feels that way. The bag has changed your body and is forcing you to confront some feelings about yourself that are painful. But you are so engaged and it's like I can hear you growing in your words. And you never know what may be a feature.

Someone told me that there are fun ways of growth like exercise or a class you like, and then there are not fun ways like being sick... but all can make you stronger and more self-accepting (someone else I know calls the latter "AFLE's" for "Another ______ learning experience," fill in the F yourself, you can say frustrating if you don't like to swear).

Thanks for sharing your process.....hang in
Posted 10/2/2011 5:20 PM (GMT 0)
This may sound flip and I don't mean it to, but don't worry about men and the bag, once you are naked where theycould see it, there is only one body part they care about! And if its a man who cares about you he won't mind anyway!
Self esteem is a tricky elusive little thing. I think most of struggle with it in some way. I've never worried so much about my looks but about my personality. I haven't figured out how to fix it, I've gotten pretty good at ignoring it though. Maybe it would be best for you to wait until after your takedown to start dating, so you won't be so stressed about it. And you can always see a therapist and get some meds to help you for the next few weeks.
Posted 10/4/2011 7:59 PM (GMT 0)
Hi Buegrass, Summerstorm and Andorable,

I'd just go ahead and use the F word. No problem with language.

lots of issues going on! If I didn#t have body issues, the stoma/bag wouldn't be so difficult to deal with. I've accepted the stoma itself, turned it into  a relationship, I know it's taking fantastic care of me and letting me eat all the salad and nuts I want, and for my part, I make sure the skin doesn't get irritated and and send it lots of loving thoughts. I even praised my stoma to high heaven when I was getting checked by the surgeon, so that it would "hear" me. In truth, it has never emitted gas noisily, not once.

But I think the trauma has hypersensitized body issues I never resolved. (Andopened up new ones, for example, I never had any thoughts at all about my small intestine, and now I know it's all I've got and so I better eat for it). Bluegrass, I'm just going to take what you said about growing as how it is, because you're right and there's no other possibility. As far as partner-finding is concerned, there is simply no one I am interested in at the moment, and in two months I'm going back into a long hospital rigmarole, 2 OPs 4 weeks apart. And until then I just have tons of work to do, and need to find and move into a new apartment too.

All of you thanks for letting me open up these issues here and for responding with such great intution and insight, I really need it. Wishing everyone sweet dreams!

 

Posted 10/4/2011 9:29 PM (GMT 0)
B'Derech, i won't say living with a stoma is perfect. it's not perfect. i know everyone including every single one on here, if someone told us we can have healthy bowels and get rid of the stoma, we'd all be thrilled! the acceptance wasn't easy for any of us. we grew to accept it and it took time for all of us to come to that point of acceptance. for me, after experiencing 17 yrs of suffering and struggling and spending my days in the b/r, having the stoma was a blessing. only after long yrs like those i then could appreciate the stoma. for those who suddenly in the middle of their lives are told that's what they have to have - it's the end of the world for them. and i can completely understand they feel that way. completely normal. it's just all relatively.

i just look at it as a very natural part of me. just like i have arms, legs and all other organs, i also have a stoma and a bag. and i feel totally natural about it. and what difference does it make from which side it's coming out anyways..? it's the same poop we had since we were born, just coming out from another side now. i'm not ashamed of my stoma, just the opposite. i don't have a problem to show it to anyone. but i know i should be gentle with some ppl not to freak them out. but i don't mind ppl knowing about this. i mean it's not like i have sinned against someone. having a stoma is NOTHING to be ashamed about.

i know for a fact that for ppl who know the stoma is temp the acceptance is harder, cuz they keep in mind that soon it will be gone, so they don't bother accepting it. makes perfect sense. honey, just go with the flow, and hopefully things will work out best for you soon! :) be happy with who and what you are. you are who you are, the same beautiful person with or w/o the bag! ♥
Posted 10/6/2011 7:59 PM (GMT 0)
Still trying to work out this getting fat business with the stoma. I'm doing weird stuff with myself, in this regard. I am doing so much emotional eating because I feel kind of alientated from my body since I have the stoma and my life is at the moment (and has been for a while but I could deal with it better before the surgery) very minimally emotionally gratifying. I work a lot and with all the stress and frustration that entails and I do not like everyone I work with. Why am I even expecting personal satisfaction from work and its environment? It is very difficult to meet single men over 45 and under 60 who I find attractive. In fact, there is no way I could even be able to notice one when I am feeling so ridiculously unattractive, fat, short, etc. Getting a jpouch is not going to change how I feel. I really wish I could blame it all on the bag. I wish my stoma would refuse to work in the face of chocolate cookies and pasta and delicious bread. I am eating all kinds of vegetables too and really healthy things and my stoma does not balk at anything, I just wish it would not let me eat the high-calorie things or when I want to eat Thai food late at night. I am truly, endlessly hungry and all the inner mechanisms that used to say, don't need to eat that, don't need to eat more, don't need to eat now, have simply shut down.
Posted 10/6/2011 9:07 PM (GMT 0)
B'Derech, there was a time when i had this emotional eating problem big time. i know very well how aweful it can make you feel about your self. it is not a good thing at all and very hard to overcome on your own. have you tried talking with someone about it? i think therapy can really help you with that. it requires you to work with yourself to change this way of thinking, make goals to yourself and change your whole concept and relationship with food and eating. this is something totally emotional and can be dealt with the help of the right therapist. i recommend you try it. i've now reached a point where food is not too meaningful and needed. i just eat when i'm hungry and mostly small amounts. now i look at food as something not worth to waste my mind and time on so much. there are more interesting things in life other than food. but it took me time to come to the place where i am now concerning food. i believe with a good therapist you can overcome this.
Posted 10/6/2011 11:48 PM (GMT 0)
I read a really interesting article in the ny times about "decision fatigue." Basically, as we go through the day,the part of our brain that makes decisions gets tired, and it gets harder to make good choices...oddly enough, researchers found that this part of the brain is restored by glucose -- so, to lose weight or control emotional eating, you need willpower, but to have willpower, you need sugar. No wonder it's so hard!

It is also a fact that it is hard to meet people in that age range, especially straight men, as more of them (than straight women) want someone younger. But you only need one, and that is possible. When you are ready.

I took a stress reduction course, which I recommend....one of the exercises I kept doing afterward was to write a list of 5 things I appreciated at the end of every day. you might try it.... won't fix all the hard things, but really helps me remember to pay attention to the things that are good too.

It is very hard when work is not going well. That's a lot of stress.... I am on sabbatical, but not sure how I will feel when I go back to my work.... I had a lot of interpersonal stuff going on, plus a lot of stuff I loved, but for years being so sick, couldn't even consider changing anything..... and with the economy as is, it's hard to move, and the people who have jobs are often totally over worked because so many don't.... I don't think it's unreasonable to want to be happy (or at least content) at your job... it's a lot of time and energy....

hang in...
Posted 10/7/2011 8:18 AM (GMT 0)
that is so interesting about willpower and sugar... maybe they can invent a willpower supplement :)
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