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Posted 4/22/2009 6:59 AM (GMT 0)
I just saw my doctor on Monday, and basically I have two choices- either try the ACE procedure (antegrade colonic enema) or a colostomy. He seems to endorse the ACE procedure, but I'm really worried about it not working for me, and about it not working long term. I'm only 26 and I need to get a lot of years out of it. (The studies I've read about it don't have good long term follow up outcomes.)

I feel like I just want to go straight to a colostomy, with hopes of learning to irrigate eventually. I really don't want to have one major surgery just to find out it won't work for me and have to go back for another one. I just want to be done with it all, and move on with my life.

I have had problems with my pelvic floor muscles- I cannot make them relax, and they are very weak at the same time. It makes it practically impossible to have a bowel movement. I've failed every possible treatment so far, including every laxative known to man, botox injections, biofeedback x 2, etc, the list goes on. I'm ready to get my life back and be happy again.

I've also had some hesitation from family and friends. I think people are just afraid to say it's a good idea because they have a hard time imagining life with a colostomy themselves.  My doctor keepps saying I''m so young for a colostomy, and that the ACE would be better cosmetically. I really don't care at this point- I just NEED to feel better. And I need a surgery that is definitely going to work.

Has anyone else had trouble convincing other people that a colostomy is the way to go? How do you deal with this? I feel like just saying I don't really care what everyone else says- just let them wait and see how I feel when it's all done. I know it will make me feel better and be happy again. Maybe I should just continue on with it and hope that everyone will be okay with it over time as they see me improve? I feel a little lost- I felt like I knew this was a solution I could deal with, but the hesitation from everyone  has me feeling scared and confused.

Thanks for your thoughts

Lauren

Posted 4/22/2009 9:40 AM (GMT 0)

Lauren,  I am sorry you are having such a difficult time with everyone...I don't have an answer for you shakehead but I did want to say that you sound like you would be OK with a colostomy and that is the hardest part to come to terms with.  I understand not wanting to go through two procedures and as long as you are comfortable with everything (especially the outcome) you should go for it regardless of what others are saying.

Not to sound cold hearted, because you know they love you, but they are not living your life of pain an suffering...and it's probably BECAUSE you are 26 that you want to have this done so you CAN get on with YOUR LIFE yeah

Posted 4/22/2009 9:16 PM (GMT 0)
yeah, i know so well what you mean Lauren, so many ppl were trying to talk me out of surgery. i was so confident about it and they all made me feel so confused and unsure about nothing no more. it's very stressing. i became so hesitant that it made me feek SOOOOO exhausted.

i don't know, but the ACE procedure sounds like it's in experimental stage, i've never heard of it anywhere. i think it wouldn't hurt to go for a second opinion, and even a third, see how other surgoens feel about this procedure and if they recommend it.

if you're confident about the colostomy, then i think you should go with what you feel good and comfortable with. don't let your dr convince you till you ask at least 2 more drs, cause this procedure is not commonly performed, or am i wrong?
Posted 4/22/2009 10:52 PM (GMT 0)
Ohio- you're exactly right! I want to get on with my life so badly, I can't sit back and watch my life pass by any more! And you're right, they don't feel what I feel every day. I am completely fine with the colostomy. I've spent hours and hours thinking about it and reading about it, and more recently I've been able to listen to everyone on here talk about it. (This site is a life saver!!!) I feel like I would be much happier with a colostomy than the way I am right now.

Hodaya- Yeah, I've found that not many people have heard about the ACE. The people that have, don't seem to have the same problems as me. I just don't feel confident that it will help me. I've read studies about it, and the long term follow-up is not very impressive. There are lots of complications and sometimes it just doesnt work, so you end up needing a colostomy any way. I'd rather just skip the middle step and go right to it.

Thanks for hearing my frustrations! Sometime it just seems like there's no one around me who understands what I feel like. Not that they don't care, but there really is now way to understand I don't think unless you go through it.

I called my doctor's office today to ask about what I need to do to schedule a date for the surgery. His secretary will call me back later this week. I think I have decided that it doesn't matter what everyone else thinks, I know what will make me feel better, and I am going to go ahead with it. Hopefully, people will change their minds when they see that it works. Or so I hope =)

Thanks for listening!!
Lauren
Posted 4/23/2009 6:53 AM (GMT 0)
once they see how happy you are, they'll be SO happy for you too, and that's when they'll start to understand.
good luck, sweetie, you're in my prayers!!
Posted 4/23/2009 2:05 PM (GMT 0)

Lauren,

I know you and I have almost identical stories, and I too did trial and error. I do not have a colon, but I am sure you read ended uo with a could have been fatal bowel obstruction and now have a loop ileostomy. The first week foe me was awful. I will not lie, but I had emergency surgery and did nothave the time you have had to plan for it. I feel better, look better, have color, no pain (well except where my abscess and inscision since I am only 10 days post-op) but this is controlled with vicodin as needed. I have n=been in the  hospital most of this month and think I may be going home today.....I am doing better with the ileo, but I am still looking into the k-pouch and having a consultation with Dr. Remzi for a continent ileostomy. I am only 28 and the hardest part for me has been my body image with the bag and I want to see if I can help this. I am married and have the most wonderful husband who if I asked would empty my bag!!!! I wish you the best in your decisions.....you just follow your heart.

Lizzie

Posted 4/23/2009 7:36 PM (GMT 0)
Hodaya- Thank you very much! I know it's the right thing. Like today when I come home from work and I have felt terrible all day, my stomach hurts so bad, and all I can think about is trying to go to the bathroom. I know I can't wait much longer for a solution. Other people just don't experience the constant day to day struggle. They just don't understand. It's not their fault, they are just lucky enough not to have to go through it.

Lizzie- Thanks for your response. I think I just need to stay focused on how I feel and what I think will make me feel better, not everyone else.
I have read your posts. I'm glad you're getting to go home! I'm sure it must be so tough to have to have surgery so emergently.It sounds like you are handling it much better now. You've had a rough month! I hope Dr. Remzi will be able to help you. When do you go to see him/her?
Posted 4/23/2009 8:01 PM (GMT 0)
yep, my dear, me toooo, here i am, back from work, checking the forum and feeling SO miserable with pain...
Posted 4/24/2009 1:38 AM (GMT 0)
I know, I feel like it's all I ever think about. Can you believe I actually felt jealous when I was talking to someone today who told me they had food poisoning for the past couple of days. They were puking and going to the bathroom constantly. All I could think was how nice it would be to have all that come out of me!

I know, crazy. It's funny what you miss when you can't do it.
Posted 4/24/2009 6:53 AM (GMT 0)
ha ha, i'm totally with you, NOTHING can make me more jealous than someone to tell me they had the most awful bug with the most sever diarrhea.
Posted 4/24/2009 3:00 PM (GMT 0)
its so funny that while i had UC i would have LOVED to NOT go to the bathroom, and yall have the opposite, it would be awesome if we could have balanced the two out between us, lol.
Posted 4/24/2009 3:14 PM (GMT 0)
lol summer, yeah wouldn't that be perfect ;o)
Posted 4/24/2009 8:04 PM (GMT 0)
LOL! Wouldn't that be just wonderful!!! Then everyone would be happy!if only it was that easy!
Posted 4/24/2009 8:47 PM (GMT 0)
hey, i've been looking at surgical options as well...i came across the kock pouch and bcir surgery. supposedly you won't have to carry a bag around and will be able to irrigate via a removable catheter? could that be an option for you? i requested some info from this bcir clinic and the packet came today... gonna look over it later to see if ppl with pfd are candidates...
Posted 4/25/2009 3:13 AM (GMT 0)
Im not sure if that is an option or not. I thought they were for ileostomies, but I don't really know. What we had talked about was the possibility of doing a colostomy with plans to irrigate, so I wouldn't have to wear a bag. I don't know if that's the same thing or not. Let me know what you find out. I may have to ask about it. Thanks for the tip!
Posted 5/6/2009 7:16 PM (GMT 0)
sorry for the late response. i didn't really find any info about pfd in the bcir brochures. i asked them on their forum and the RN said they would need more clinical information. hope you're doing well.
Posted 5/6/2009 8:14 PM (GMT 0)
well..I just went to see my doctor today, and it's official, I am getting a colostomy. He ssaid the k-pouch was not an option for me. I think I am happy to try the colostomy and see how irrigation will work for me. I am just waiting to get a date. I can't wait really- is that weird to be excited about an ostomy? I just can't wait to feel better!!!
How are you feeling? Have you decided what you are doing yet? I think you mentioned the K pouch and bcir-is that right?
Posted 5/7/2009 10:12 PM (GMT 0)
i'm so happy for you jj, finally what you wanted.

i wish you a most successful surgery, no complications and speedy recovery!!

keep us posted.
Posted 5/8/2009 5:08 AM (GMT 0)
Thankyou so much! I'm excited because I can't wait to feel better, but I'm scared at the same time. I hope I have made the right choice.

How about you? When do you go to see your doctor? I'm so glad you finally called!
Posted 5/8/2009 11:37 AM (GMT 0)
i want to have the surgery, cause after 16 years of trying everything i've finally realized nothing can help me, but i cant say that i'm not scared and i guess it's only normal to be scared. if you've tried everything and still nothing gives you any relief, and there's not much to offer for anismus, then i think you've made the right decision. you need to move on with your life.

as for me, well, my gi thinks i'm in a lot of anxiety and don't want to send for surgery yet. he now sent me for a psychiatrist evaluation and i'm seeing the psych guy every monday now. i've seen him last monday for the first time and this monday is my second session.

he's kinda right, cause it's true, i've been in a lot of anxiety, but i feel i'm over it now and i want to move forward for surgery, i didn't agree to take any anxiety meds and i truly don't feel i need them, esp now that i feel so possitive about the surgery and i truly don't have the anxiety simptoms i had few mons ago.

but now my gi is not sure anymore and i'm so frustrated. it's just such a silly situation now. i need to explain to him that i no longer have anxiety and feel ready for surgery, and i hope i can convince him. i dont know what i'll do if he decides not to send me for surgery and starting new with another dr seems just dreadful after being with this one for 15 mons. i can't go on like this, i've been like this long enough and i feel more than ready now.

so that's my (long) story for now. so when's your surgery?
Posted 5/8/2009 11:53 AM (GMT 0)
That is really frustrating that he is making you do all this. I'm sure he's just trying to make sure you will handle it all ok. My opinion from talking with multiple doctors and friends and family is that people who don't have issues with their colons/ small intestines can't imagine having a bag, but those who have to deal with being miserable for years learn very quickly that there are much worse things in this world than dealing with a bag. It's all in the frame of reference I think. I have had trouble convincing my doctor that it's a good idea (and he told me on Wednesday that this was thevright choice for me) I think it just takes people longer to adjust to the idea. They all say I'm too young for a bag, and I say I'm too young to not enjoy my life! Anyways..I think he probably he your best interest in mind, just make sure he knows how you feel so he realizes you're ok with surgery.

I don't know yet when my surgery will be- either by the end of May or in the 2nd week of June. I'll let you know when I find out.
Posted 5/13/2013 3:54 AM (GMT 0)
Not sure if any of you still check in here but looking to see if the surgery was a success for anyone with PFD

And what about the k pouch option?

I just met with the surgeon this week who suggested leaving my colon and rectum. this is troublesome to me because i am somehow going to need to pass mucus produced from them which im unable to do. from what I've read on here and advice from other members when I've asked. So looking for any feedback possible
Posted 5/13/2013 12:48 PM (GMT 0)
Hey there. I still browse from time to time. Glad I saw your post. I had the colostomy surgery in 2009, was irrigating and everything was going pretty well. Then it started becoming harder and harder to empty for me and I tried all sorts of changes to the way I irrigated until I finally stopped (because it was taking me hours and hours to get returns). I started needing laxatives to get anything out, and come to find out my colon quit working- it's called colonic inertia. My colon became really long and lost all muscle tone. I actually just had my colon removed about 3 weeks ago and now have an ileostomy. I'm going for my follow up appointment today. It works much better. My surgeon said that eventually if I was able to do biofeedback and get my pelvic floor muscles working that he could reconnect me, but I'm in no hurry for that as long as this works. I still have some of my sigmoid colon and rectum and I do pass mucus every couple days. Sometimes it's a little difficult to get out because if the PFD but its much less volume than when I was using the bathroom this way. Sometimes I have to just have to come back later and try to pass it. Eventually it comes out and is never really that uncomfortable. I'm not sure why they want to leave your whole colon in. Seems like if its not working it should just come out. Have you had any transit studies to evaluate your colon function?
Posted 5/13/2013 2:02 PM (GMT 0)
Lauren -- good luck.

On the UOAA site there are a few people who irrigate. If you are a candidate for it, it seems like it is a far more predictable way to manage the colostomy.

I am sure you can get additional info and insight to help you FYI.
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