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FM
Former Member
Haven't been on here for a while simply because I have been well enough not to! Have kept an eye on things though. Well my ileostomy is now 14 months old and I feel I am ready for step 2 of 3. However I visited my surgeon last week who despite urging me months ago to go for it now seems to be back pedalling or is it his duty to point out all the horrors of the next surgery? This is what he told me:

He will have to open me up again. Had problems after first keyhole surgery which resulted in open surgery to fix problem. All the surgery is in the pelvic area where there are two large blood vessels which if nicked could cause me to haemorrhage. My bladder is in that area and again if nicked could mean bladder problems. He also mentioned something about sexual function being impaired? New stoma will be difficult to manage as he is going further up. New stoma will be very watery and if I lose too much liquid I could dehydrate which could result in kidney problems which may or may not lead to renal failure.

Fast forward to me having the surgeries I may be left with a pouch that could possibly fail resulting in me going back to the stoma in the first place. So much to think about. I did not realise it was this complicated and thought it was more like the next step?

If I am honest, much as I hate the bag, it has given me my life back for the last 14 months. It's been so liberating to do ordinary things without the fears that we all know about.

So what do I do? I have another appointment in September and by then I want to have made a decision. Help!!

Replies sorted oldest to newest

mgmt10mgmt10Member
All those things your surgeons mentioned are the risks that go along with the jpouch surgery. They could happen but chances are they won't. Step two of the surgeries gives you a loop ileo and yes, the output is a lot more liquid. I had the loop for 3 months and it was a pain in the neck, but I managed it until my takedown.

I guess it all boils down to you and your lifestyle. If you don't mind having the bag(but it sounds like you do mind), then you can spare yourself two more surgeries and any complications. But if you think you want to give the j pouch a try, it could really turn out to be a great thing. I love my j pouch. I feel like I have so much more freedom than I did when I had my ileo.

I knew about all the complications that could happen because I really pressed my surgeon to tell me ALL of them, but I didn't dwell on it. I knew I wanted to give the j pouch a try. Especially since my sister has one too and she has done great with hers for the past 21 years.

How many j pouches has your surgeon done? Do you feel confident with him?
mgmt10
kathy smithkathy smithMember
Exactly what Marianne said. These are things that could happen but usually don't. Just be aware of dehydration with the loop ileo. Eat/drink foods/liquids high in salt. Rehydrate with electrolyte replacement products rather than plain water. The loop ileo is a pain in the arse/belly but that's resolved when you have takedown surgery.

kathy Big Grin
kathy smith
FM Former Member
Hi mgm,

Thank you for your reply. Surprisingly he said he only does about 12 of these surgeries a year. Most of his patients are cancer ones and not ones with UC. I really like him and I do trust him, after all he very nearly lost me so I feel he will go all out to make sure that does not happen again. My family gave him a right 'roasting' for what happened to me and I feel confident it was more about circumstances beyond his control rather than something he did wrong? I will take on board everything I know and when I next consult I shall have a list of questions. Thank you again.
FM
D dodgeMember
Hi Susan,
I had my ileo for 6 years until until my diagnosis chainged from chrons to indeterminate.
The bag was very good to me after the initial shock of having it, I could eat & drink whatever I liked but after being given the option of a pouch I personally jumped at the chance as I decided if I didn't I'd always wonder what if!
Yes there could be many different complications but you have to weigh up what YOU really want. My family were not really in favor of the pouch because I was so healthy but I went for it anyway.
Currently I am between pouch formation and takedown and it hasn't been easy, at times I have thought I have made a huge mistake but I know that in the end if I achieve a healthy working pouch it will all be worth it.
My takedown is scheduled for Sept 6th as my wound got an infection and opened up, which I thought was the end of the world but actually my scar is better than my previous one! and my surgeon is very busy.
All I can advise is do your homework on your surgeon and as I see your in the UK you really should be looking at St Maks in Harrow.

Good luck, I hope have been a help. Smiler
D
D dodgeMember
Sorry susan I must have started writing my post as you were posting your last questions.
A loop ileostomy is when they give you a tempory ileostomy upstream from your current one to divert the flow from the pouch which has been formed while its healing. Yes they can be a bit of a pain and mine was no different but it is only a tempory thing, and yes currently you do have an end.
With regard to your surgeon being confident your in the safest possible hands is the main thing. Being confident in your surgeon is a must.
my surgeon does about 2 pouches a week and does alot of corrective surgry when other surgeons may have made mistakes so I knew I was in the right place, and having to wait a bit longer for surgery although a bit anoying, is a good sign.
Just do your research Smiler
D
kathy smithkathy smithMember
Imagine a hose in your belly. An end ileostomy has the hose directly exiting your abdomen. With a loop ileo they take that hose further up the line and bend it then they cut a slit in the bend of the hose and that is the exit through the abdomen. The other end of the bent hose is attached to the rectal cuff. This is why you'll sometimes see stool while you have the loop ileo. The loop is not a problem for some people. For me it was a pain. I couldn't stay hydrated and my (very stupid) doctor told me that my (dehydration) symptoms were post traumatic stress disorder. What an idiot he was. And this was after I'd told him that I had really sever diarrhea and all that I was eating/craving was stuff covered in salt. But again, not everyone has a problem with the loop ileo.

kathy Big Grin
kathy smith
FM Former Member
Hi Dodge,

Thank you. Are you a girl or a boy - just wondering? You waited a long time before you had the jpouch. Like you I really can eat and drink what I like with little problems. The thought of going through watching what I eat and not holding onto it again is insufferable.

I did look at St Marks but as you said the doctors there are very busy and I live a long way from London and would not cope with all the travelling etc. To be fair I'm happy with my surgeon and I don't think he would nearly kill me twice!!

I have been back at work nearly a year now and again the thought of being so ill again and going through more surgery is starting to get to me hence why I am thinking about forgetting the whole thing and staying with stoma A!

So much to do think about and would I always wonder...
FM
FM Former Member
Hi Kathy,

Your description sounds a little like the drawing he did for me. It looked as you said which was all fine until he said...and these joins may leak which may or may not result in you leaking and/or getting an infection! He definitely should not be in sales!

It's a shame they can't do all the internal bits and me keep my current stoma as it took an age to heal. It (she) works really well now and aside from some skin issues has served me well; so am I jumping from the fat into the fire? My husband says not to bother as I am well etc however it's not him who walks around with a bag of C*** on his right hip all day long with all the upset that goes with it. 'When in doubt do nowt' is the phrase I am going to have to live by for the moment. Thank you Kathy. I have read many of your posts over the last year or so and you seem very well grounded and pragmatic about the whole situation. Not easy in 'our' situation.
FM
DD Dog Day (Guest)
Susan I understand you're between a rock and a hard place now, I honetly feel for you. Since you have a bag though and are already half way there, I understand why you're considering a pouch. And after all these years I've lived with one, I think of it as a bad compromise. But there's no real alternatives left for me now that I've pulled the trigger. I could go back to where you are now, and I would if I felt comfortable living like that, but I know from 3 months of experience, I don't. My thoughts are if your pouch is anything like mine, the ride will be rough, but given where you are now, it's a gamble worth taking, unless that is you can find other alternatives that might work for you.
DD
R RoMember
as far as i understand it, your stoma should come through the same hole in your abdomen, so the "healing" time shouldnt take as long...BUT its definitely an annoyance.......you really have to decide if you have the patience for it, because going from living so well with your current stoma, it will SEEM like you are taking a step backwards as you adjust to life with the pouch..but the thing is, once youve adjusted, you should be happy, as most poeple are immensely happy with the results......

im in that in between period...i have my pouch but am still in the adjustment period. and it definitely requires patience....im trying to stay focused on the longer term goals!!!!
R
kathy smithkathy smithMember
quote:
My thoughts are if your pouch is anything like mine, the ride will be rough
Fredbird/Dog Day - your comments aren't helpful especially in light of your quite well-functioning pouch. Your only complaints are that you don't get more than 7 hours of sleep per night and that you're lactose intolerent. Both of these complaints also apply to many coloned people. Your comments could dissuade someone from making a rational decision about their health.

Susan/England - they will usually use the same opening for the new stoma but because of that bend it is sometimes (sometimes) a bit more of a challenge. Appliance changing is usually best in the morning before food starts traveling through. And a lot of people munch a couple of marshmallows a short while before appliance changeing and they say that helps slowing things down.

And thank you so much for the kind comments. They mean a lot to me. Cool

kathy Big Grin
kathy smith
D dodgeMember
Hi Susan

Im a boy, well I'm getting on a bit but still a boy !

I didnt wait all that time then decide to have my pouch, the option wasnt there before as I was initially diagnosed with chrons, it was only about July last year that the pouch was even talked about.
I decided I had to go for it because if I hadn't and had my rectum removed (which had to be done as it was becoming problematic)and never gave the pouch a chance I would have always wondered how it would have changed my life.
I did for a split second think "dont rock the boat, your healthy and in fairly good shape" but i just had to go for it, they were going to open me up again away so decided to go for it. I actually nearly pulled out just before the put me under,due to nerves but im glad I went for it and takedown cant come soon enough.

Its not an easy decision but good luck
D
FM Former Member
Hi Dodge,

I knew you were a boy!! Well a man - we are all getting a bit long in the tooth! Thanks for the advice and despite everything that you guys have said I still don't know what to do. I feel like I am walking openly into the lion's den. Like you say why rock the boat...but I hate the bloody bag despite how good it is to me.

I have time enough to think about it though. I have been back at work a year now (well an academic one -September to July as I am a teacher)and the thought of being off again is horrible. And moreover the thought of being so ill again. All that toilet business,pain and uncertainty is a world I left behind when I had the ileo in the first place.

My problems started when the surgeon told me all the downside. Did I already know? Well sort of but once someone spells it out to you it's a whole different ball game. Watch this space.
FM
DD Dog Day (Guest)
quote:
Fredbird/Dog Day - your comments aren't helpful especially in light of your quite well-functioning pouch. Your only complaints are that you don't get more than 7 hours of sleep per night and that you're lactose intolerent. Both of these complaints also apply to many coloned people. Your comments could dissuade someone from making a rational decision about their health.

Kathy Smith, are you Susan England? Of course you're not. Let her be the judge of what I said here. Oh and to tell me that my J Pouch is well functioning when you're not even in my boots is absurd.
DD
kathy smithkathy smithMember
Fredbird/Dog Day - you've been very refined this time around on the site and it's been much appreciated by all of us who've known you for over a decade. It appears that your more recent posts are starting in again with the negatively vague 'bad pouch' tales. You have never mentioned anything other than your lack of more than 7 hours of sleep per night (which is actually adequate for many people) and your lactose intolerance which you had before you had j-pouch surgery.

Your comments to people who are trying to make decisions about their health could cloud someone's decision because many people are frightened of the unknown. 99 out of 100 people could state that the j-pouch is great and a person could focus on that 1 out of the 100 that is using those vague scare tactics to dissuade people from having the surgery.

Your comments this time around have been much more helpful and much calmer but every so often you're going off those tracks. I'm sure you can understand my concern for people who are trying to make a very important decision about their health.

kathy Big Grin
kathy smith
Laurie49Laurie49Member
Hi Kathy! It's been forever. I hope all is well with you and yours.

I'm SO grateful that you posted that to Fred Bird/Dog Day (I've always referred to him as 'name de jour"). I just started reading a bit here and I heard that familiar oh-I-am-such-a-victim tone in Dog Day and wasn't sure if anyone else had noticed (I should have known you guys would be right on it Smiler Smiler). You're correct in that the only problems he has complained about, ad nauseum, on every site imaginable are that he could only get 7 straight hours of sleep per night (OH THE HORROR!) and that he was dehydrated ONCE in 20+++ years. Oh, and I think he has had to adjust his eating habits a bit. Can you imagine? Poor, uncoloned, self-imposed victim, otherwise perfectly healthy, RUNNER! Ugh! You'd think that he'd figure out that perhaps the reason he has nothing better to do than stalk j-pouchers is because he is so negative and is obviously socially inept...all of which has nothing to do with him not having a colon.



In any event -- it's nice to see all of you familiar faces. It would be great to catch up. Huge hugs to all my old friends! xox
Laurie49

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