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Posted 4/15/2011 1:31 PM (GMT 0)
hi

I need to make my mind up about going back to the ileostomy - i had the reversal several months ago last september - but since then i had been having similar issues to before surgery with bloating, pressure and tummy ache.. etc - my laxative is prune juice right now but it does not cure the problem.

I see my surgeon at the end of May for a follow up and to decide if i want to go back to the ileo - he suspects my sb is not working properly and prescribed me Prucolapride - which has not helped me particularly.

Thing is i have not met anyone on here who had a bag, got it reversed and then went back to it again...i have posted on other sites and got no response at all.. confused

I am really scared about another surgery and getting my head round the bag again, although having it for 18 months was the first time in 10 years of normalcy...

Thing is: Will my experience be the same as before i.e. great?

Or will my bowel contoinue to malfunction? i.e. if they take out the wrong piece of bowel to create the stoma?  argh i am soo worried and feel so dispondent cry .

any help/advice/experience would be greatly appreciated.

x

 

Posted 4/15/2011 1:45 PM (GMT 0)
You say you are taking prune juice as a laxative. Do you have trouble emptying? Have you ever been checked for a stricture? I had my reversal last October and had simular symptoms. Found out that it's an anal stricture (they can happen farther up in the intestine too) and I have to get it dialated every so often.
Posted 4/15/2011 2:52 PM (GMT 0)
hiya

no probs emptying apart from when prune juie wears off and consultant didnt mention a stricture - i have been the same since the reversal and they checked the connection then.

Posted 4/16/2011 2:27 PM (GMT 0)
Karen, I am keeping my ileostomy. Life is too short to live with these digestive issues. The bloating, tummy pain, and constipation made my life miserable. I wish I would have had the surgery for the ileostomy 10 years ago.

Have you posted on the UOAA website on the General Ostomy discussion board? They have an extremely active board and I am betting you will find somebody who went back to their ileostomies after takedown.

My advice to you is to go for it!
Posted 4/16/2011 11:19 PM (GMT 0)
My surgeon is still talking about reversal. I go the 27th of April to have another colonoscopy. I really don't think that I want to do the reversal. My life with my new found friend is awesome. I don't think I realized how much of my life I was missing till now. I can eat anything I want, go anywhere I want at anytime of the day or night, and not have to worry about where the nearest bathroom is. It is fantastic. I have adapted to my new life very well. I am to afraid of something going wrong or having problems afterwards. My theory is this, "If it aint broke it don't need fixin." and I don't consider me broken.
Posted 4/17/2011 3:10 AM (GMT 0)
Karen,

If you have no stricture at the anastomosis, then maybe you have a pelvic floor muscular issue as in your pelvic floor does not work well, so maybe going back to the ileo would be the best. Rosemary
Posted 4/18/2011 9:43 AM (GMT 0)
Thanks guys for your responses. x
Posted 4/18/2011 1:14 PM (GMT 0)
Karen - not much advice here as hubby is only 4 months after his surgery. He went into the surgery anticipating and hoping for the j-pouch. The surgeon did his best but it was not meant to be. After the initial disappointment (me moreso than him) hubby accepted it and we are living with the permanent ileostomy.

In the whole scheme of things, his age, our juncture in life having one surgery is not such a bad thing either. He healed very well, adjusted to the pouch very well and we are still in the trial and error phase of finding the exact best set up for him but doing well overall.

Having the opportunity to get a life back, be pain free and not needing a rest room in a minute's notice....it is so much better to be back in control instead of the UC controlling him and me too.

Sorry for your troubles and things not working out for you. More surgery certainly is nothing anybody wants to have but if in the end you will get back a better quality of life, then that is what you ultimately want. Good Luck.
Posted 4/18/2011 1:41 PM (GMT 0)
i hope so thanks x
Posted 4/18/2011 4:32 PM (GMT 0)
Hey Karen
As you know I felt 100 times better with my Ileo too compared to how I'm doing now and would consider going back to it in a heartbeat..

I think you just have to have trust in the Prof and courage that you're making the right decision. Go for it. good luck and let us know how you're getting on...
S x
Posted 4/18/2011 4:54 PM (GMT 0)
Thanks sarah

In the end he will only ask what i want to do but i do need more info from him- it wont be for a while yet cause i dont see him til end of May- he always seems rushed off his feet - they never give you a definate idea of the outcome to expect which is frustrating .  x

Posted 4/18/2011 5:00 PM (GMT 0)
It's a very unusual situation to go back to the bag I should imagine? and one he actually may not have the answers to. It's hard having to wait until end of May though :-( that sucks. Esp when you want to get on and make a decision.. but maybe a little more time will help. Hang in there honey.. it must be horrible having to make this decision, but hopefully when you see him he'll be able to help you get it straight in your head? Just stay focused on the fact you had a positive experience last time and it WILL be again! thinking of you xx (p.s. see my new thread for update!)
Posted 4/19/2011 9:09 AM (GMT 0)
ok thanks for that sarah. x
Posted 4/19/2011 7:42 PM (GMT 0)
Karen,
Just read your bio in depth. Reason you are having issues being rehooked is that you have had in the past pelvic floor issues and surgical attempts to correct them. Once the pelvic floor is treated surgically, it may be restored structurally but that does not mean it has been helped functionally (as in how it works).

Here is an experiment. Just eat something really red with lots of red food dye. THEN remember that you have eaten it so you will not panic. See how long it takes this red to go through you. If timely, then it does not mean something is wrong with your small bowel transit, it means the issue is with your pelvic floor and you will know whether to go back to the bag or not. Rosemary
Posted 4/20/2011 9:45 AM (GMT 0)
Rosemary thanks - yes sometimes i have eaten beetroot in a salad with my evening meal and I have noticed that it takes around 3 -4 hours or so to start to appear; however it is still appearing the next morning which is around 14 hours later - what do you make of that???

I never thought about the fact that i might have pelvic floor issues - i had tests and no one said anything - that is typical though isnt it lack of comunication and all with these experts.... i had a pelvic floor repair as my bladder was hanging low due to childbirth... in any event i wish someone would tell me what is going on and like you said it woudl make this decision much easier . ... though it looks like i am moving towards it more each day
Posted 4/20/2011 1:15 PM (GMT 0)
Karen, if you were comfortable with the bag and were feeling good, then why not go back to it. i bet you have some kind of a pelvic floor issue. most of us with CI do. but even tho we have pelvic issues, drs still want to give it a try w/o the bag. apparently many do manage with the anastomosis. so its only your decision. i remember you were very happy with the bag and feeling great, so why not go back?
Posted 4/20/2011 2:58 PM (GMT 0)
yes hodaya i was happy.... but i cant help feeling scared that ... what if they take the wrong piece of bowel out to create the stoma i.e. the part of my bowel that does not work??? that is, if my sm bowel is not working??! argh i dont know why i am having such thoughts...

my consultant seems to think the stoma was placed as near to the rectum as posible but the stoma nurse said it is usualy placed around 10 feet away from the stomach thereby 20 feet is not used??? WHY cant someone tell me what is what!!! anyone!???
Posted 4/24/2011 2:34 AM (GMT 0)
Karen, are you still pondering? Just wondering. I saw my doctor Thursday and I am having surgery June 20th to have the total colectomy, tummy tuck, hernia repaired, and temporary loop ileo turned into an end ileo.

I was going to wait another year, but my hernia has really gotten large and this has caused some bagging issues....

Even with the hernia though, my life is great.

I am keeping my rectum though and my doctor said if my rectum ever decides to work, then I can always get hooked back up.
Posted 4/24/2011 4:23 AM (GMT 0)
Karen,
So sorry you're having problems. I remember when you first had the reversal it was difficult, but I'm sorry to hear it didn't get better with time.

I bet you do have pelvic floor problems and that's why you aren't able to go without prune juice. Have you tried miralax? I have the same problem I'm sure, because I was living on prune juice for awhile but couldn't do that any more. I spoke with Dr. about ileostomy but decided to try miralax first and it fortunately works pretty well for me. Does it feel like the stool is in your rectum and you can't get it out? If that's the feeling, and if miralax doesn't work for you, I'd definitely go for the bag again if you felt better with it. At least you know you can deal with it emotionally, and it sounds like it worked well for you.

Give miralax a try if you haven't yet.....before my colectomy miralax didn't help at all, but I take it 2x a day now and it keeps things moving...thank goodness. It did take a couple days in the beginning for it to start though,

Good luck!

Janie
Posted 4/24/2011 1:20 PM (GMT 0)
Karen - I know there are more success stories out there and people living their lives and naturally we are hearing more about the ones that fail as people come here for advice and suggestions.

My huband's surgery and surgeon was planning to do a 2 step j-pouch process if everything was ok in there to do so. Unfortunately it was not meant to be. I think I was even more disappointed than my husband initially. Even knowing the additional surgery and potential problems I/we wanted a shot at it. I was not very happy with God that day of the surgery when I knew the news before hubby did but obviously I calmed down and accepted it. Fortunately it did not bum him out too much as he is a "it is what it is" kind of guy and moves on. I am too much of the woulda, coulda, shoulda kind of person which is not really good.

For any of you who for whatever reason it doesn't pan out for in the end I am so sorry you have had to endure extra discomfort, inconvenience and surgery. You have had the opportunity to have given it a try so in the end it will hopefully allow you to accept the permanent ileostomy a bit easier as you will not be wondering "what if" and it will not be as difficult as you have already had exposure to the wafer/pouch process.

The main thing is if you must have the reversal try to embrace it and think positively about getting your life back and look forward to no longer having the pain, inconvenience and problems that your failed pouch has given you.

{{{Hugs}}}
Posted 4/24/2011 6:22 PM (GMT 0)
2much to bear:

Sorry to hear about your situation...I don't know that I can add to anything else anyone has already said on this thread...

I just had surgery after 15 years with UC....I am more concerned with what the prednisone has done than anything else...as far as having the bag.....I read this website (maybe too much) for the past 3-6 months and got an idea that it wouldn't be easy to adjust..and, it has been 10 days since surgery....I just changed my bag by myself today with no one around.....found some minor issues and posted here about them as well as e-mailing my WOCN that was at the hospital.....

I would say, it is a challenge with the bag....there are some very helpful folks on here who help with all sorts of issues..at the same time, I have noticed that since I'm not in a rush to go to the bathroom (except to pee...ha!), that worry is kind of going away......I've got several issues from prednisone that only time, effort, and therapy will cure (hopefully). 

It sucks to think you have to have another surgery...that's one of the reasons I opted against the j-pouch...more than one surgery and the chance that things could go wrong later...of course, the same can be said about the bag, but I've had my one surgery, so without the j-pouch I look at it as I've got two mulligans (surgeries) to spare....

I am not that familiar with the condition that made you have surgery...since you have experience with the bag, you know what to expect...also, I will say there are new ostomy products that will be coming on line in the next 9 months to 3-5 years..so, your life may actually be easier (ostomy wise) down the road than it is now with a bag....

God Bless you and may he watch over you whatever your decision....

enigma

 

Posted 4/25/2011 3:27 AM (GMT 0)
Karen,

I would say you need a small bowel transit test. There is this really easy one where you eat some radioactive egg then they just put you under this geiger counter type machine and trace how fast it is moving. You also need anorectal manometry, balloon expulsion test, defecogram, and pudental nerve terminal latency test. This would tell if or where things slow down in your small intestine and would tell if your pelvic floor is not working. You had pelvic floor issues then you had surgery then that STARR. My guess would be your pelvic floor is not working. Find out about your small intestine. SOme foods do take longer to pass than others. And over time the small bowel does slow to make up for the lack of colon in a person. So I think you need some current testing done. THEN you will feel more comfortable making your decision. As it is now, you have no current data on which to base your decision. How could you know if the bag would work well again or not? Likely it would, but you need a current work up. That is my thought anyway. Good luck. Rosemary
Posted 4/25/2011 11:32 AM (GMT 0)
Thanks guys for all your replies and support.......

janie miralax makes me bloat and feel sick.... no i dont feel anything is in the rectum - i used to feel like that but that was cause some bowel was stuck betwseen the vagina and rectum ..... the rest is history...i go several times a.m. with prune juice and still need more after lunch so i go too much really - around 12 x a day .... but still get a tummy ache and bloating ...?? feel better hardly eating? :( i cant get on with life needing the loo so much but if i dont take it then i have more gut ache and nausea than usual.

good luck in your future surgery answers4me...

rosemary i have had all the GI tests but not the small bowel test.. i can push balloon out ok but no idea the result of the other stuff ...

yeah i will see what the consultant says to me end of May.... hopefully he will give me answers/tests or what i dont know.... i have had it with tests... i think he may just suggest the ileo as he mentioned it before ... one question though:

does anyone kknow where the stoma is in relation to the small bowel? i.e. how far near the rectum is it? do we use all our small bowel or half of it with an ileo? i cant find this out on the web at all.  thanks.x
Posted 4/25/2011 9:36 PM (GMT 0)
I think with an ileo it depends on each individual case, if there is disease then they will use the bit that isn't effected. They try to use as much as possible as the shorter the bowel left the harder it is to absorb the nutrients from the food and also liquid which can lead to dehydration problems and malnutrition.
Posted 4/25/2011 9:46 PM (GMT 0)
I had UC, and my surgeon created my stoma right at the tail end of my small intestine for my permanent ileostomy, so I did not lose much of my small bowel at all. I am not sure if you have had a j-pouch and go back to an ileostomy if a little more small intestine is lost in that transition.
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