Feeling depressed..

[tsal]

Been a long time since iv been on here. I recently went up to London to have tests done to find out whats wrong with my rectum. I had a pull through operation when i was a baby & since then iv basically been incontinent..i had a clear out operation while i was up there & it took them over an hour apparently to get everything out & now i have a 'mega massive rectum' as my consultant called it.
Basically my options are to try this Irrigation system as that may work to keep myself cleared out, (which i really really really dont want to do) or i can have the ACE procedure..which i didnt realise involved having a colostomy bag for 3months while it heals. But he did say i could still end up with some leaking from that because i have no sphicter muscle at all.
Great. What do i do? Neither is a good option to me. I just want it to go away. & to be honest right now i feel like my life isnt even worth living for. Irrational & dramatic i know, but its just how it feels.
Any advice would be greatly appriciated.
Thanks

[Tysmom]

the ACE should not have you wearing a colostomy bag. It isnt the same surgery. My son has an ACE, well his is called cecostomy but the results are simular. It basically is another place to administer an enema instead of doing it rectally. I can only imagine what you must feel as an adult. Here are some website I found helpful when learning more about ACE....

http://www.cecostomy.com
http://www.cecostomy.4t.com


I also wanted to add that since we have had this surgery done my son has been continent 99.9% of the time. It has been great for him and lifted his self esteem and he feels good about himself now. We use to irrigate him rectally daily before this ACE and it was a very emotional thing and hard on him physically. Best wishes to you on your decision, I know it is tuff one!

[tsal]

Thanks for replying. Yeah when i did research about the ACE before, i never heard of having to have a colostomy bag while it heals, so that was a bit of a shock. Also my parents or anyone else it seems, dont understand that rectal irrigation isnt an easy option. Its horrid & not how i want to live my life, so im guessing the ACE is my best option.
How long does it take your son to empty out, if you dont mind me asking? x

[sheri, Cameron's mom]

I wonder if the colostomy is being placed because they plan to re-do the rectum(?) because of it's huge size and at the same time they'll place the Malone. If so Tess, I agree with Janel, the Malone or cecostomy can be life changing for you. My son had surgery after surgery for his IA and it wrecked his anal opening w/scar tissue. Finally he had the ACE Malone procedure and he has been virtually accident free since. He's 7 and has a wonderful life. I know so many others who have found the same with the ACE or cecostomy. It takes Cameron about an hour from start to finish with his ACE.

Three months with a colostomy is not something I take lightly, but I know you'll make it through that with the help of these great folks here who are living great lives with a colostomy. Once you have your ACE, we'll all be there to support you (there will be ups and downs at first even with the ACE). I hate to think of someone your age so down. I'd say to go for it, you have so much to gain.

BTW...If the irrigation system they're talking about is rectal enemas, I'd do them until you can get your surgery date, it might help you nail down a good liquid "recipe" that you can use once you get your Malone. We did daily rectals for a year before the Malone just to make sure that Cameron could stay fairly clean with them.

[Tysmom]

Tess,

My son doesn't have IA he has HD (Hirschsprung's Disease)....anyways for him we hook him up it runs through in less than 5 minutes and then I have him sit and remind him to push for atleast 30 minutes and sometimes up to 45 mins. Xrays have shown he is empty his colon. It is different for everyone but that is what has worked well for him.

[tsal]

Thanks again for replying! Thinking about it, yes that would be the reason i'd have the colostomy bag. They want to shrink the size of my rectum, so i suppose he meant while that heals, id have to have the bag. Makes sense now, i didnt realise til you said!
Ive been thinking about it & i think in the long run the ACE is going to be much better. I find the irrigation really hard & almost degrading, if that makes any sense?
Obviously as its your sons & not actually you, you must not know what it feels like, but do they experiance any discomfort when doing the ACE procedure? I ask how long it takes because the consultant said, because i have no muscle at all it could take a while for it to all empty & i could still get some leaking after, but i'd prob be able to put up with that compared to what life is like now..
He also talked about taking muscle from my leg to create a sphincter..anybody know anything about that?
Thankyou so much for replying, it really is a great help!

[Tysmom]

True I have no idea what it feels like and even myself I have never had an enema either. But I asked my son many questions.....in the begining he said it felt warm and then he says he doesn't feel anything at all. The only time he has ever complained of pain is when we add too much soap. He complains of burning pain when it comes out of his anus. He has never complained of cramping but I hear that some people do feel cramping as the solution runs through.

My son also had a colostomy for 6 months at age 5. And the only things that was difficult for him was skin breakdown from the glue and tape on the wafer. He had some pain in the first few weeks but that was mainly due to having 25% of his colon removed and the other stitches healing not really the stoma part.

best wishes with your medical journeys.

[Flemmart]

Hi...we've all been there...it's very hard emotionally but there is so much support here for you...have you ever considered a kock pouch continent ostomy? If so there is a dr in the UK performing them...here is his info:
Professor Neil Mortensen
Dept Colorectal Surgery
John Radcliffe Hospital
Oxford OX3 9TATel +44 (0)1865 220926
email: Neil.Mortensen@nds.ox.ac.uk

Or, he may be a great 2nd opinion if you need it before you move forward with any surgery.

Keep the faith....

[sheri, Cameron's mom]

There were times that Cameron was very resentful and hated the rectals. Degrading no doubt. Sometimes my husband had to hold him down...I tear up just thinking about that. That's when we talked to him about the ACE and that it would mean a 14th surgery. But, that we'd do his flush through his belly button, not rear. He was like "sign me up". Before we knew it, we were on our way to Cincinnati.

He only experiences pain when he's eaten too much cheese, skins or popcorn because he has a hard time passing them. He gets a little crampy now and then when we've skipped a night of the flush.

I have not heard of the leg muscle. I'm going to ask around for you though. Cameron has no control, but does seem to have the ability to push using his stomach muscles. Maybe a little Miralax (stool softener) in addition to your flush will help keep things nice and soft so you don't have to have the ability to push. Sometimes, I'll have Cameron wear a little maxi pad in his undies to catch any residual...no biggie.

Cameron had surgery on a Monday, accessed the Malone on Wednesday and we were at the aquarium on Thursday.

Good luck with everything!