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Had successful colectomy and now almost 2 years later am constipated

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Posted 5/3/2009 11:00 PM (GMT 0)
I had a successful total colectomy for colonic inertia in Aug 2007 and up until about 2 months ago had bowel movements every day and felt wonderful.  I was very thankful.  Then, I started becoming constipated.  Cleveland Clinic did a sigmoidoscopy and didn't find anything and suggested that I use miralax.  It was working for about 2 bowel movements per week, and now I'm down to 1 per week and am feeling miserable.

Have any of you out there gone thru this and what did you do or what has happened to you?  I am so scared and all kinds of things are running thru my mind.  I've even scared myself that maybe an iliostomy would help me and I wouldn't have to worry anymore. 

If you have an iliostomy, can you ever become constipated again?  I have so many questions and I feel like I can't find any answers.

I really would appreciate any response if someone has gone thru this or can help me out..

Butterfly

Posted 5/4/2009 2:06 AM (GMT 0)

Lori,

I'm so sorry you're having problems.  I know having constipation again is my biggest fear.  I have pelvic floor dysfunction and a slow small intestine, but I'm just praying it's not too slow.

Have you tried milk of magnesia?  I know someone posted that they had to use mom every couple days and it helped.  I know you hate the thought of laxatives again, but maybe it's something you could try. Will enemas work?  My doctor said I could use enemas if I needed to.

There was a girl who used to post named Amey who had the same problem you're having.  Also of course, poor Lizzie had constipations problems again. I have no idea if you can get constipated after an ilieostomy, but I'm sure someone will answer.  I'd like to know myself.

I hope and pray things turn around for you soon.  I've heard such good things about the Cleveland Clinic; didn't they have any other suggestions for you?  I'm sure they must have seen this before.

Good luck Lori, and keep us posted.

Janie 

Posted 5/4/2009 4:42 AM (GMT 0)

Butterfly-

I know I have posted to you before about all of my struggled post colectomy. I did miralax as well, it did not work for me and then I switched to MOM every day about three times a day, but never felt empty. I have sever pelvic floor dysfunction called anismus.

I ended up as you can see having emergency surgery almost 3 weeks ago and have a loop ileostomy. NO I have not been constipated since. I have had a heap of toher issues, infection and pain and nause, but these are all symptoms that not everyone gets......I am not going to lie....since it being emergent aftera 7 day long obstruction with no resolution I have had a very hard time emotionally, but if you were prepared I think you would deal better. Its amazing what would be inside of me and I am not eating very much at all.....and all of it would be stuck inside me.

I am going to Cleveland Clinic as a new pt to get consulted for a k-pouch....its internalizing like a j-pouch, but for people who do not have control of their rectum or cannot use theirs like me. I go May 27. I like, you had a scop with no problems, more laxatives, biofeedback, and botox all of which I think you have.......

I had an open surgery and spent 16 days inpatient, but I had complications. I wish you the best and I know how you feel. Its scary to think of an ileostomy, but as they told me, without it I would not be alive right now.

Any other questions, let me know.

Lizzie

Posted 5/4/2009 10:26 PM (GMT 0)
Janie and Lizzie, thank you so much for your responses. I feel like I'm the only one going thru this setback right now, but of course I'm not. I am so grateful to hear from you.

Lizzie, can you tell me what a J pouch is? I don't have a clue.

I have faxed my doctor at Cleveland Clinic a letter telling him everything that I'm going thru, and asking him to please call me or have someone call me back and help tell me what I need to do or help me thru this.

Butterfly
Posted 5/5/2009 3:37 AM (GMT 0)

Butterfly-

A j-ppouch, i believe is a two to three surgical procedure, but you have to have function of your rectum muscles. I beliebe its firsta temp ileo, then either creation of puch and recconect to rectum or otherwise a third step. I go to Cleveland on May 27 for a consultation with Dr. Remzi, ans understudy of Dr. FAzio, whom I have geard was the best but is unfortunately sick.

I am getting a consulatation for a conversion of my loop ileostomy to k-pouch (aka kock, or koch pouch). With this they take about two feet of your small intestine and create an internal resevoir to hold the waste. Then after time (i believe is a 13-21) day hospital stay with an indwelling catheter in pouch. They close the stoma, like mine and make a button hole stoma or inscision that is flush with skin (does not stick out at all) and then after the pouch is stretched ( i think about 6 weeks) and you are healed you empty with a catheter 2-4 times a day with some irrigation. All you have to keep over the opening is a small adhesive bandage and they can place this very low. They create a valve, also out of your small intestine which is how the stool does not leak....just natural mucous and this acts as a lubricant for catheter. The biggest complication is a slipped valve, but i believe its about 10%.

I am so sad and scared for you and am praying everyday. I wish you the best,

Lizzie

Posted 5/6/2009 1:46 PM (GMT 0)
Wow Lizzie,

I can understand now why you'd like to have this surgery.  At first I thought (because I hate surgery) that I wouldn't want another surgery for anything, and especially after all  you've been through, why would you want another one, but this surgery sounds like it might be worth it.  I pray

you'll be able to have this final surgery!

Lori,

How are you doing now?  Any news yet from the Drs?  Are you able to go at all?  Just wanted you to know I"m thinking about you!

Janie

Posted 5/6/2009 2:30 PM (GMT 0)
I just got a return call from one of the doctors at Clevelend Clinic and spoke with him about my constipation, and the laxatives not working.  I was able to tell him how frightended this constipation is making me, and he said that I should be seen, but the only thing that they could really offer me at this point would be an ileostomy.  I  asked about a j pouch and he said that it was too late for that to be a choice.  I asked if I did have an ileostomy, would I probably have constipation, too, and the answer was no.

 

So, I'm waiting for the appointment schedulers from Cleveland Clinic to call me back and also I have to see if my insurance referral is still alright from when I went in March.  I need to see a doctor and maybe can get some answers.  I used to be terrified of having a bag, but when the doctor spoke of it on the phone today, it wasn't so terrifying anymore.  It seems like it's just been a long struggle and I'm tired of constipation, so maybe having a bag is better than worrying every day if I'll ever have another bowel movement.

 

Butterfly

Posted 5/6/2009 3:57 PM (GMT 0)

Oh butterfly.....

I hope you can get some peace out of this decision or porobable one and get an appt soon. Having an ileostomy is a life change, but you will not have constipation and just like any other surgery the pain eventually goes away. I wish you the best in all your decisions....I will pray for you....and I am thinking of you.

Lizzie

Posted 5/6/2009 4:35 PM (GMT 0)
Lizzie, I just spoke with my insurance company and my referral was only good for one visit, so it's not any good anymore.  I knew you'd understand, too, as you've had such a time with yours, too!

I decided to call my general practitioner and made an appointment to talk to her tomorrow.  I'm considering asking her to give me a name of a local surgeon to speak with about an ileostomy, instead of battling my insurance company to go out of network to Cleveland Clinic, again.  Clevelend Clinic is another 8 hours away for me, too, so it was alot of extra expenses when I had my colectomy almost 2 years ago.

I hope that you're feeling better everyday.  I think that it's really tough getting peace out of any of these decisions.  Before I got your post, I was sitting here thinking, if this surgery is an elective, should I go thru life miserable with 1 bowel movement a week and distension and try to get thru, or should I have an ileostomy surgery and see if my constipation can finally go away?  Then, if my constipation finally goes away, my body image will have changed again.  All of this is frightening.

Butterfly

 

Posted 5/7/2009 12:13 AM (GMT 0)

Butterfly-

I wish I could give you a hug right now :( I am so sorry you are going through all of this. I understand the never wanting to deal with constipation as well as the insurance battles. Right now I am only approved for the surgery consult and then they will re-evaluate based on CC's decision. Just curious have you looked into the k-pouch. Yes, an ileostomy will give you a life of no constipation. I am only 3 weeks post-op, but besides my pain and nausea issues I have stool coming out all the time. For me, being emergent and having no time to process it I did not handle well. I have always had body image issues and this has made it ten fold, but I have to realize the surgery saved my life. I still want another opinion to see if I am a candiate for k-pouch, but that me and a lot of people can be ok and truly accept the "bag".

The surgery for me, was harder than the TC, but I had been in for almost a week prior with a major obstruction. I now have an open inscision and that was more painful to me than my lap TC. I told my hisband about you and he feels so bad....I never wnated this to happen to anyone else. I wish your TC would have been sucessful. You now, are the only one I can think of on here like me, but you had two years of good times....I had three months so I can imagine its even more frustrating for you.

If you do not want to fight with your insurance, dont, but I know you could get it approved and your doctor from CC could call as well. I had mine with my original surgeon who did my TC and he is local and amazing. Just make sure whomever does it is a colorectal surgeon if you stay within network. I was approved for consult within 1 week and did not have to fight too much this time.....but I know how tiring that is as well. I am praying for you and if you ever need anything email me personally, just tell me and I will get it to you somehow.

Hope you can sleep tonight,

Lizzie

Posted 5/7/2009 12:25 AM (GMT 0)
Lori,
I'm so sorry; I remember talking to you on the phone last year when I was planning my surgery and you were so happy with your results. I wonder why things just stopped? Without further tests, are they sure there's no other option? Maybe it would be good to find a colon surgeon in your area just to get another opinion.

I guess Lizzie is the one person on this board who can sympathize with you. I truly hope you can get some relief. I've asked myself if I suddenly get constipated again, would I be ok with a bag? I know it wouldn't be something I'd want, but being constipated is such a horrible thing that I think a bag would be better than the constipation. I'm sure if you have to have one, you'll have time to adjust to the idea. I hope there's something else you can have, but if not, at least you'll have your health back.

Please keep us posted.

Hugs, Janie
Posted 5/13/2009 10:49 PM (GMT 0)

I met my surgeon today, and he seems very knowledgable and really nice.  He spent over a half an hour with my husband and I.  He doesn't want to do an ileostomy just yet, because he says that I will still have constipation if my small intestine doesn't work.  So, he's ordering a test to make sure that my small intestine still works.  If it works, he said he'll schedule surgery for any day that I'm ready, but if my small intestine isn't working, he said we'd cross that bridge, but we'll try to know something before Friday afternoon.  Needless to say, I cried for the poor man.  Whenever I hear constipation, it just hits a nerve with me and I'm really frightened, too, to say the least.  So, I'll wait some more, but I think that I'm in really good hands.  My husband reassured me, too, that he felt that I had a really super doctor.

Butterfly

Posted 5/14/2009 4:03 AM (GMT 0)

I emailed you.....I had a small bowel follow through....? not sure what they will do for you?

love u.

Lizzie

Posted 5/14/2009 6:34 PM (GMT 0)
Lizzie, I've just been reading about the BCIR (Barnett's Continent Internal Reservior) and maybe you're right. It sounds so much better than an ileostomy.

You mentioned that you have a loop ileostomy. Do you have to have that before you can have this (is it called a K pouch, too)? If so, does it have to heal first, and then have the rest of the procedure? Please forgive me, but I'm trying really hard to catch on and I'm really stressed right now, too.

Comparing it to an ileostomy, do you know which one can have the most problems in the long run? I know that the BCIR certainly sounds more appealing after I've read about it, now. I can see why you have been so persistant about wanting it. Now, I am eager to hear what you find out. Please let me know all that you know about it now, and let me know what you find out about it at Cleveland Clinic. All of these surgeries effect our entire lives for ever and it seems like if we don't do the homework (and there isn't ever much written to grab onto), we're going into the procedures blind, other than the friendships of this message board.

I love everyone of you and we truly each need all of our support together to get thru this.

Butterfly
Posted 8/14/2011 11:07 PM (GMT 0)
Hi, please bear with me this is my first time on here... I live in the UK and wondering if anyone knows whether. The traditional ileostomy i had done in 1976 could be altered to a Koch pouch..... I would really appreciate you remarks and comments





Iamelizabeth
Posted 8/15/2011 11:47 AM (GMT 0)
Hiya

Not heard of a Koch pouch.  Do you mean K-pouch? Why would you want to change to something else?  There are so many complications you could be at risk at and the fact your body is not used to 'going to the loo normally' .... you would have to weight it up really but just speak to your consultant. also you might want to start a new thread so ppl can see this query in relation to what it is - there are many who have had j-pouch who can help. :-)

Posted 8/15/2011 12:35 PM (GMT 0)
yes, koch pouch is k pouch. i don't recommend it either. it's a too complicated surgery and involved too many risks.
Posted 8/16/2011 8:44 PM (GMT 0)
Hi Butterfly.. just thought I'd drop in with my experience.. which hopefully you'll find positive. I had a partial colectomy for perforated diverticulitis last year and somewhere along the line what was left of my colon decided it didn't want to work again. So after the temp ileostomy reversal last October, I've had a really rubbish time. Awful constipation, bloating, nausea, couldn't eat - etc etc you name it. After months of researching, chatting to the others on here (who were amazing) and loads of testing, I finally decided to have a permanent Ileo - in fact I basically begged my surgeon to put it back. Turned out nerves in my colon had been damaged and there was no motility.

In the UK they don't offer K-pouch anywhere.. according to one of the top Professors in the World who I saw, it is far too complicated and prone to many risks. I didn't even consider a J pouch either. For me - and this is just my personal opinion, as I do know many people on here have a great experience with J pouch - I'd rather have the ileostomy than risk any complications. Keep it simple and be in control - that's all I wanted. Plus I'd had a bag before and knew what was involved. The bag doesn't bother me one bit.. I feel sexier and more attractive WITH the bag than I did with a giant swollen stomach and constant nausea and constipation.

I'm now 5 weeks post surgery and it's the best thing I did. I'm eating totally normally and am back running and cycling and feel fantastic. Better than I have for about a year. Yes there is a bit of adjustment, but there is a solution to this misery. you don't have to suffer. Life with a bag really isn't anywhere near as bad as you imagine and shouldn't be the 'last resort'.

Yes get your small bowel checked out and if it is slow, then an ileo might not work for you. But cross that bridge when you get to it. Do you know if they left any colon at all?? Do you have any idea why you've suddenly become constipated after all this time?

Good luck anyway - figure out all your options, do your research and you'll make the right choice for you. Keep us posted. Big hugs Sarah x
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