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Posted 10/5/2011 5:05 PM (GMT 0)
HI everyone,

i just want to update you all on my situ:

had the gastric test - saw my consultant (my usual one is now retired).  he dismissed the test as unimportnat!!!

all doom and gloom about getting stoma back again: it might not work, adhesions, complications etc etc and have to have it on other side.

when i mentioned my GI report of a few years ago where it said i expelled 50% barium and did this mean i have a problem with the outlet he casually said "you probably have" arrh!!!.  nobody told me this!!! mad   I am agry and feel let down and dispondent.  when i said ppl like me shldnt have reversals he just skirted around the issue saying he wld not have done the same op as the professor did anyway (what is he on about). 

He wants me to try irrigation and then in three months i go back with my decision .. .

i would be grateful for encouragemnt and advice please.  i dont wantto drink prune juice, stick paper up my butt, use endless amoutns of germaloids, get bigger piles, bloat, have pain, etc for the rest of my life.... ! sad

thanks xxx

Posted 10/5/2011 5:30 PM (GMT 0)
Hey Hun.. how's the irrigation going??? you feeling any better?? guess not on the basis of your post.

I think deep down you know the answer to this question.. you were such a tower of strength and support for me and I did the right thing with your support. Don't be put off by the 'threat' of complications.. you know how much better you felt and you know this is where you need to head.

No-one will offer it to you now.. it's a quality of life issue and you're going to have to go in there and state that it's what you want.

When do you go back again??
Posted 10/6/2011 12:55 AM (GMT 0)
Karen your bio says it all loop ileo quality of life 100%. Tell your surgeon now your decision. OR find another surgeon?

Rosemary
Posted 10/6/2011 9:11 AM (GMT 0)
Yes thanks sarah and rosemary.  No irrigation yet - i have to wait for an appt to see seomone about it at the hospital - goodness knows why - iits not rocket science.  i catn be bothered with it.  can you imagine if you are out all day on a trip -  how wld that work - i wold have to do it at least twice a day - its mad.

I am just finding it hard to make 'the' decision - as i am v scared - 100% more so this time.  I can have the stoma back if i want its just that there is very little (according to him) clinical data on it - but that cant be true ... as why wld he paint such a gloomy picture  then? confused

I did ring my stoma nurse there who looked after me both times and she said there are a few who have them put back and the stomas do work ... she was more encouraging and said my consultant is actually a very nice man and wouldnt want to think he has imtimated me ha.  i felt like saying "well he could have manaaged a bit of a smile" as he was very morose.

oh well thanks.  i go back 16 dec.  the nurse said to pop in and see her with regard to placing the stoma in the same place, as she said it can happen it depends on the shape of the area round it. 

Posted 10/6/2011 3:48 PM (GMT 0)
I know how hard this decision is Karen.. as you well know. You know my outcome! why would yours be any different? I literally had to sob at my consultant and beg him to do it ( I also gave him v expensive wine every time I went! and I knew where he lived... :-0) all the while thinking 'what if it doesn't work???" it was VERY scary. But look at me now.. am SO much better.

.. why wouldn't it work for you either???

In terms of position, mine is about 1 inch lower than where I had the temporary one and even though the wafer sits on the scar it doesn't cause a problem at all.

Get your nurse on side and get her to write to your consultant saying you need his support and this is your decision.

The irrigation is NOT a long term solution... you can't do that. Ridiculous.

The problem is that surgeons see a stoma as the last resort .. very few see it as a 'quality of life' option and that's what we need to re-educate about. As we all know, a stoma isn't the end of the world and we all manage very nice lives thank you very much.. much better than the alternative.

You can't continue like this.. BUT you are going to have to be very firm with the surgeon and be strong with your decision. Keep strong hun!!
Posted 10/6/2011 4:26 PM (GMT 0)
thanks sarah

you tummy might be a bit diff to mine in that i have had two ops on the midline also but i not sure that makes more differnce. i will try thanks. x
Posted 10/6/2011 5:13 PM (GMT 0)
hi Karen,

irrigation is not the way to go in the long term. this dr doesn't understand your distress and how this problem affects your life. most of them don't understand how severely it can disrupt one's quality of life. only you know what you need to feel better again. and we who went through this know exactly how you feel as well. you'll have to demand it.

i think a second opinion in your case is a must, cuz maybe he's wrong and they still can do it at the same place, or at least close to that. can you see Sarah's surgeon for a consult? don't rely on this dr's opinion only and see at least one more dr for this. some drs are more skilled than others. for example we have a very known to be one of the best surgeons here in my country. my friend's mother had rectal cancer and the tumor was very close to the anus. they could save only 2 cm from anus up. this surgeon told them that in order to be able to do a surgery with no need for a stoma, they need at least 6-7 cm from anus up, and since they couldn't in her case, therefore there is no option other then a perm colostomy.

she then heard of another good surgeon. he said that he can make it w/o a need for a stoma even with only 2 cm. she had surgery, no stoma, it's now been 2 yrs since her surgery and she's still doing fine! so what im trying to say is that maybe one surgeon see a specific situation as difficult or even impossible, but another surgeon is able to handle it. pls go for a second opinion. maybe more ppl here from the UK can give you recommendations on surgeons. maybe Sarah's surgeon is the right dr... keep strong, firm and decisive and go for your goals! waiting to hear how things work for you and hopefuly soon!
Posted 10/7/2011 10:07 AM (GMT 0)

Hodaya

thats an amazing story - its good to have second options yes.

I may go for another consult with sarah's surgeon - it wld mean paying a lot of money though as on the NHS wld take months, and then see if he wld go on to do the op on NHS?  I hated the london hospital anyway as i never got looked after very well post surgery due to staff shortages.

I feel so alone in this and my family just dont understand my dilemma. thanks for your support xxx

Posted 10/7/2011 10:50 AM (GMT 0)
i wish you best of luck with finding the right dr!! i would definitely also pay more if i had to, and i did when i needed second opinion. i'm so sorry your family don't understand. i know how it feels when ppl around you don't understand how hard this situation is.... we're all here with you!! i really believe there shouldn't be a significant problem to prevent you from having your stoma back, i mean lots of ppl had this done...!! including Sarah! why couldn't you?? hang in and keep us posted! ♥♥♥
Posted 10/7/2011 10:56 AM (GMT 0)
Thanks Hodaya - you are a Godsend ! - I woudl like to know where these ppl are who have had their stomas put back? There arent any (apart frm Sarah) on here it appears. xx
Posted 10/7/2011 1:22 PM (GMT 0)
for one, my best friend had a stoma, then it was closed. another year later she had it back. no problem. i remember there were others on here who had the stoma made twice. don't remember who they were exactly, but i know there were. maybe to do a search on the forum and find something. and in any case, i've heard of some here in our israeli forum. buttom line, it happens quite a lot for many reasons, like ppl who have the j pouch and it eventually doesn't work and they go back to the stoma, ppl with incontinence problems that having the bag is better for them, ppl with chronic fistulas and other reasons. i'll try to search the forum too after the sabath is over.
Posted 10/7/2011 2:08 PM (GMT 0)
okay thanks Hodaya - that is very positive and helpful to know - i suppose these people are doing fine and no longer need to frequent a forum. thanks again for that info. xx
Posted 10/7/2011 5:57 PM (GMT 0)
Hi Karen,

It is hard to decide if you want a second opinion but if you aren't comfortable with your options it might be worth it...I agree with everyone here, irrigation is NOT a long-term solution! I would guess your doctor is trying to prolong everything as long as possible so he can make sure you REALLY want it. Some doctors do these things for their own peace of mind. I would be pretty angry though if they were being so "whatever" about your gastric emptying test and defecography...those tests ARE a big deal and he should pay attention to them.

I got a second opinion about my upcoming surgery and because if it, I feel much better going into the surgery, the first surgeon I saw seemed kind of like your consultant...didn't really pay attention to the things I was saying/asking. If you have the time and the means to do it - call around and see if you can get in with someone else who will really listen to you.

I'm not sure what the whole process is like over where you are, is it difficult to get in to see someone else?
Posted 10/8/2011 1:11 PM (GMT 0)
Karen you have to do what you feel in your heart is right. Just reading in between the lines here I am thinking you need a different colo rectal surgeon and one that you can research and determine is "a good one" to take care of you once and for all. Hopefully you can get some references from people in your area.

We ultimately went to Mayo Clinic which is a 2 1/2 - 3 hr drive and a bit inconvenient and added expense but that was secondary in the whole scheme of things when it came down to getting him better.

For years ....We have this feeling with doctors that we have to stay with them, they know best etc. Now that I am over 60 and have many years of experience if I don't have a comfort factor and a comfortable relationship with a doctor (mine or my husband's) I'll get a different one.

That happened with a GI Dr of my husband's going back to early treatment days. I am his advocate, secretary, you name it and this Dr. (who was middle eastern) I felt had issues with women and kind of blew me off with all my questions etc. and after a few appts I had enough and we switched. Best thing I/we ever did. Hubby at first didn't think it was necessary but I insisted and he also loved the Dr we ended up with locally.

She is the one who guided us towards Mayo Clinic as she admitted that he was at the point he needed some higher specialty intervention. This came about when he was hospitalized locally and we already had this conversation as I was at my wits end. When her personal nurse broached the subject and the Dr came in later that day to ask permission to send a referral to Mayo she gained even more respect from us as she wasn't the type of Dr to act like a "god" like so many of them do.

I truly hope you get to make the decision you feel is best and have a surgeon that is very supportive and super qualified to get you back to living again without all this trouble. {{{Hugs}}} and prayers for you.
Posted 10/9/2011 3:10 PM (GMT 0)
Oh Karen, you have been through too much.  I can't believe he just rode off your gastric emptying test.  I just found another reason why I feel so bad because I have gastroparesis after having that test.  Believe me, I know about the money thing because I am trying all I can to get on public aid, some income, etc., so I can keep moving and live to be healthy in my life!  Also, I know how hard it is to be up-front with doctors because I can get flustered, too.  Everyone tells me I need to be more forceful; it is your health afterall.  I hope you can get your ileostomy, so you can move on with your life!

Kyle blush

Posted 10/10/2011 9:43 AM (GMT 0)

Hey thanks Alibee UC and Kyle - thanks for your input.

Yes over in UK most people use the NHS so getting to see another consultant is like gold dust and can takes months plus i have been to several hospitals over the years and believe me no one cld diagnose me or help me until i went to the Barts in London.  It has all gone a bit pear shaped since my professor left and so one of his team i who never saw me before got me the test and i suppose the Lead consultant guy thought what a waste of time - that is the gist i get.  it prob was. what a waste of my time thought! doesnt give you a lot of faith in these people though does it.

So it is prob the best place as far as knowledge and practice goes - their colorectal dept  is the only place (as far as i am aware) that recognises, treats and researches CI and related stuff - the professor i was under pioneeered and taught the whole team for the past 20 years or so...

so i am a bit hestitant of going elsewhere at this late stage in things - besides they gave me my stoma before and know my history - its just my old surgeon has retired and this one is a bit younger and from a diff school of thinking etc... he cant even manage a smile. 

So i am getting closer to making this decision - things seem to move a lot faster for you guys in USA so i envy that... thanks everyone for supporting me. x

Posted 10/10/2011 9:51 AM (GMT 0)
things will work out, Karen. is Sarah's dr really far away from you?
Posted 10/10/2011 10:08 AM (GMT 0)
No only around 30 minutes or so - but i would have to pay to see him ...
Posted 10/10/2011 12:50 PM (GMT 0)
i know. i hope he can do the surgery on NHS, but i thought, if he can't, maybe he can reffer you to one of his collegues that can?
Posted 10/10/2011 1:01 PM (GMT 0)
yeah i am a bit wary of going down that route...of not knowing the surgeon etc.... sarah's surgeon has no knowledge of CI and the like although he is a good surgeon obvisouly..but he deals with diseases of the bowel etc.

I wld be realy wary of going with someone with no knowlege of ppl like myself if you know what i mean... so i am not sure what to do now really.... so i am gonna leave it ... might ask husband what he thinks but his usual response is... "i dont know" so he is no good really. thanks anyway hodaya hope u are well x.
Posted 10/10/2011 1:34 PM (GMT 0)
i think that if you tell this dr that that's what you want, and if he sees no reason why it can't be done, i don't think there should be a problem. you tell him you've experienced life with a stoma and it was a better quality of life for you and that's what you want. why should he prevent you from it? and it doesn't matter why you had surgery, ppl who had temp ileostomy, then reversal, then they decided living with a stoma is better for them, no matter what the reason for surgery was, the surgeon usually respects their wish! i know this from many other ppl who preffered to have the bag back. keep us posted.
Posted 10/10/2011 2:44 PM (GMT 0)
Thanks HOdaya - yes you'd think my surgeon would respect how i feel wouldnt you, i agree - i will keep you posted. x
Posted 10/16/2011 1:13 AM (GMT 0)
Sarah, I think your post mentioned bribing the doc with wine :-) LOVE IT! hehehehe! Rosemary
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