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People celebrate their takedowns with such joy

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Posted 10/12/2013 4:46 PM (GMT 0)
Yeah, I was very ill before surgery. Just read (and responded to) a post which brought it all back again.

I have considered the possibility of being unhappy with a reversal. I suppose it would depend on the outcome. I'd be okay with 4-8 BMs a day. And the reason I know I'd be okay is because I was always okay with that with Crohn's.

An ileostomy bothers me miles more. I had a leak today. I could feel something and was worried. Now 9 times out of 10 when I worry about a leak, it isn't a leak. But this time it was. And it made a mess.

I've had more leaks and accidents in 6 months with a stoma than I did in 13 years with Crohn's. I've lost confidence; I don't really entirely trust the bags to do their job. In some ways I was more confident in the beginning.

And that's the long and short of it. I'm sorry I bothered you. I think you are good folks on this board; I just feel utterly depressed with everything's that transpired. Again, sorry. I suppose it's something wrong with me.
Posted 10/12/2013 9:07 PM (GMT 0)


I don't think you are bothering anyone here.  I think many are like me and have run out of suggestions to try to help you.   I know personally I cannot relate to what you are feeling because I am happy with my stoma.  Of course, I was one of those with 10+ trips to the bathroom and incontinent, so this new way of life is a definite improvement for me. 

Because I have Crohn's, reversal was out of the question for me.  However, given what I went through and the things I have read about what having a j-pouch might possibly involve, I would have declined.   It sounds too much like what I had going before surgery.  Emptying my pouch 4-5 times a day and changing the system once a week suits me fine.

Like others have pointed out, I think you owe it to yourself to get a new therapist.   I am sorry that you have had a long history of depression which probably factors heavily into your non-acceptance of your situation.   A chronic illness is hard enough and I am sure it is much, much harder for someone who had prior issues with depression.

Posted 10/12/2013 9:35 PM (GMT 0)
Hi all...am new to this group but not new to the discussions...I've been thru most of what you all have had to deal with in one way or another. Depression, sadness, etc. go with the post surgical stuff....I think after months/years of dealing with the diseases its like being in strike mode all the time. I am one of those on the celebration side. No more bloody diarrhea, nausea, can't go somewhere because of any of the UC symptoms. I was 8 years old when diagnosed, and 15 at surgery time. Put yourself in my shoes of being a teenager, wanting to do all things teens do and CANNOT. I feel sad for you that you are having such a hard time. I wish there was something one of us could say to make it better but in the end, its up to you. I did suffer the depression, etc after my surgeries wondering when the heck things were supposed to get better. At the time my surgeries were done, we didn't have all the wonderful meds, probiotics, and other things to make the path a little easier...we literally had to feel our way. At the end of the day, I decided I wasn't going to let the depression and sadness win....I was a stronger person and I was going to be the winner. 37 years later (do the math I'm 51) I have a wonderful life....and I would do it all again if I had to. I even go to Mexico. I stock up on the meds I know I will need, even took my vitalyte this year (stupid container exploded in my suitcase due to air pressure and what a mess to clean up). Please find another counselor who really specializes in helping people with chronic illness. The average one doesn't know anything about how to help us. If you haven't been down our path, its hard for others to understand. My heart goes out to you....but, you are still alive and from what I can tell on this forum, the folks here really care for you. Good luck and I will keep you in my prayers.
Posted 10/12/2013 10:46 PM (GMT 0)
37 years? Was your pouch built by Dr Parks? That's right around the time that he was doing the first IPAAs ever.
Posted 10/13/2013 12:23 AM (GMT 0)
My surgeries were done at U of Iowa Hospitals by Dr. Soper and Dr. Anderson (first names escape me right now). I was the first one done there and it was considered experimental at the time. To this day I owe both of them my life...I had some struggles after surgery, especially after the first one, waiting for things to heal. Lots of obstructions, bowel kinking,etc. that had to be overcome. I look back now and some is a blur, especially right after both surgeries.
Posted 10/13/2013 1:01 AM (GMT 0)
Wow, that is crazy! Very interesting to have you posting here. Have you ever needed another (related) surgery?
Posted 10/14/2013 3:25 AM (GMT 0)
NCOT, if you've been having regular leaks for six months, no wonder you hate having an ostomy. Have you been getting help with trying to fix whatever is leading to the leaks? That just seems like a good entry point... I know you've struggled with depression for a long time, and I don't want to oversimplify, but on the matter of the ostomy itself, it's way easier to deal with it if leaks are very, very rare or not happening at all. I think some of the folks you are comparing yourself to are in different situations with regard to how intrusive the bag/j pouch is (for ex, I have not had a messy leak in well over a year and have great confidence in my bag.... which i say not to make you feel bad, but because I would be feeling totally different about the surgery if I had never gotten to this point and was still unsure all the time about having another leak).

37 years, wow.... we are the same age, but I didn't get diagnosed until my 40s.... I've often thought about how much harder it would have been to be sick younger. So glad that your life is good!
Posted 10/18/2013 1:23 AM (GMT 0)
Thankfully no other surgeries required. I had a rectal fistula develop about 13 years ago....one doctor, not familiar with jpouches and their idiosyncrasies wanted to remove my pouch and do other stuff, even though the pouch wasn't the problem....not good. We then found a good colorectal guy and his way of solving the problem was WAY better than having surgery, plus it cleared up the infection. No issues since other than the usual with stomach viruses....hospital here we come. After finding the vitalyte I make myself drink at least 32 ounces a day of the stuff...staying well hydrated seems to help in warding off the usual virus crud that makes the rounds. Otherwise....things stay good, just have to take care of ourselves. tongue
Posted 10/18/2013 1:59 AM (GMT 0)
@NCOT- I second bluegrass' advice. What is causing the leaks? Do you not have access to good stoma nurses for advice? I have never had a bad leak, and in 5-1/2 months have had two tiny leaks, both of which were in the first two months when I didnt understand some stuff and my stoma was changing size (shrinking) week to week. There is such an infinite variety of barrier seals, wafers, etc out there, such that leaks simply shouldnt be happening.
Posted 10/19/2013 4:14 AM (GMT 0)
Hi NCOT, I read somewhere on here that it takes up to a year to get used to the colostomy. People were mentioning "ok" days mixed with days of tears and regret. That's where I am too and it's close to 5 months since my surgery. I go back & forth, yay...freedom from horrendous pain, then crap....I hate this bag & dealing with poop and pain!! Yep, I have pain AGAIN, everyday. Just not as bad, since the surgeon cut above the rectum...that nerve damaged section gave me the worst pain.

I guess what I'm trying to say is that you're not all that unusual. This is a major life change we've undergone, it's going to take a long time to get used to it! Sure, I curse at the bag and get impatient with daily meds (prescribed by my DR) taken to try to force some normalcy from my spastic intestines. This sucks and I'd rather have my old life back. Ain't happening! I can't undo the car accident that damaged my intestines...so I have my pity party, then blow my nose, take a few deep breaths and try to find something to occupy myself. That sounds trite, but we have to keep going. I do best if I'm thinking of others, or doing for others. What do you do that makes you happy? Do more of it, if you can!

Also agree with these folks, definitely look for another therapist. I have one recommended by a friend, and she's wonderful! She agrees that life isn't fair and what happened was terrible, but "Lin, what are you going to do with your life now?" I'm sure not going to sit and wait to die! I see her every other week and vent, then listen closely to her suggestions on dealing with my life, setting attainable goals and so forth. Find someone that acknowledges what you're going through is hard, but will offer realistic ideas of what you can do with your life now. It's not over and we can make the best of it...who knows, maybe even help you accept/get used to this way of life! Good luck, I wish you the best!
Posted 10/24/2013 1:42 AM (GMT 0)
Thanks folks. To be honest, I read your responses a few days ago, but I was too depressed to reply to them :-/

At least it wasn't a bag leak which made me depressed. I have good and bad days regarding the ileostomy, but if I think too much about it I start to feel depressed again. The bag leaks are not as frequent as I made out, but not quite as rare as what you folks seem to have either. I did go through a bad period of anxiety over the bags leaking, which, while not entirely gone away, is less than it was. Maybe my bag-changing technique is not as good as it could be, but it does seem to be all about making sure the wafer 'takes' to the skin, eg hold hand over the bag like a muppet for a few minutes to warm up the wafer, etc.

I do think being depressed makes the bag a million times harder to accept. I sometimes wonder how anyone could like having a bag, then I think of Pro and blueheron (who goes climbing up mountains and actually chose an ileostomy over a pouch), and think the problem must lie, in large part, with me.

LinCee - It must be worse for you in a way, 'cos your accident really did come out of the blue. At least most of us had debilitating bowel disease beforehand, but you went from being (presumably) totally healthy to having your bowels irreparably damaged in a few seconds. It must be hard to avoid the 'what ifs'.

Anyway, I gotta go to bed now, so goodnight folks... :-/
Posted 10/24/2013 9:15 PM (GMT 0)
Today is a bad day, not that anyone cares.

All I want is to not have a stoma. Yeah, sure it won't make me happy, but it'll make me happier and I'll settle that. Worst year of my life, never wanted this stoma, never wanted this operation, I absolutely refuse to believe this is the "best" outcome, just feels like nobody has bothered to research any alternatives once the j-pouch was developed. Hey, 90% of people can have one, so £%T the remaining 10% who can't have one, don't worry about them, 'cos they'll never $%^$%ing stand up and complain, they'll just be told it was the best thing to happen to them.

No, the best thing which could have happened to me was not having a stoma.

Edit: Sorry, I've calmed down a tad now, although I was actually restraining myself quite a lot as it was... >.>

Post Edited (NiceCupOfTea) : 10/24/2013 3:54:25 PM (GMT-6)

Posted 10/25/2013 12:06 AM (GMT 0)
NCOT- It must be terrible to have doubts and regrets re: the bag. I did not choose mine; I was injured in a routine hernia surgery. I was perfectly healthy before. Imagine my fear, anger and depression when I have 5 abdominal surgeries b/c of stupid mistakes. Sepsis twice, peritinitis twice, liver damage, ptsd, etc. My inestines broke open twice and they left the contents in my abdomen for three weeks until I got to a great hospital. almost 2 years later, except for scars and some pain, all is ok, but I am still sad. I think it is natural. I regret going to that hospital even though my wife said to goto the other. I hope you can come to terms with your situation and see how special life is and how easily it can be taken from you.
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