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jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/26/2009 10:54 AM (GMT -6)   
Hello everyone! I just found this forum and have been encouraged by some of the posts i've read. However, I haven't found anyone with the same symptoms/problems that I have. I was wondering if there is anyone else out there with SEVERE chronic constipation due to pelvic floor dysfunction? After 4 years of going to multiple doctors and surgeons with no solution, I am going crazy! One surgeon told me that I should take an antidepressant and consider visiting a pain clinic because there is nothing wrong with me!!!  Since then another surgeon has told me that I have pelvic floor dysfunction, and the muscles just won't relax. I have tried EVERY medication/laxative/enema...etc. available by prescription or over the counter. Nothing helps, only makes it much worse. They make my stool very soft/liquid and I can't even get that out. I've had every study known to man done, some even twice. (Including a sigmoidoscopy with NO sedation at all!- most painful experience of my life) I didn't know they did these things to people! I have had botox injections into the puborectalis muscle- with no improvement at all. I am starting biofeedback this week as a last resort. The only other options that have been presented are the ACE procedure or a colostomy. I am absolutely DESPERATE for a solution!!! I am only 26 years old and I HATE my life right now!! I want my life back SO BAD!! Has anyone had the same problem and what has worked for you? I haven't found very encouraging results with the ACE procedure- from what I've been able to find. Has anyone ever tried biofeedback? (It sounds a little voo-doo-ish to me). Also- how is your life with an ostomy? Better than before? I am to the point that I don't care what has to be done I just need to feel better soon!
 
Sorry to ramble and whine, it's been so frustrating and I don't feel like anyone understands how I feel every day. It's so exciting to find people out there that have similar issues!
 
Thanks!!
 

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2009 1:18 PM (GMT -6)   
hi jj,

i'm so sorry to hear about the pain you're going through. i also have sever chronic constipation. been like that for 15 yrs now. i wanted to ask you something.. if you don't take laxatives at all, do you get to feel the urge to go, but nothing would come out, or you don't even feel the urge at all? the reason i'm asking is to find out wether the colon is working right and it's just the rectum that can't relax or is it that the whole colon doesn't function.

if you feel the urge to go, but it just can't come out, then you have an obstruction within the rectum only, but if you can go on for days without even feeling the urge, then it could be colonic inertia.

did you have the zits marker test in which you swollow a capsule that contain 24 rings that can be seen in an x ray? did you have defecography test in which they fill your rectum with barium and ask you to sit on a toilet like sit and try to expel the barium? if you didn't have these 2 tests, then you really should have them. they can show exactly where the problem is in your difficulty to evacuate.

i hope you manage to get help soon.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/26/2009 2:58 PM (GMT -6)   
Hodaya,
Thankyou so much for your response! Yes I have had the sitz market study- it was normal. I have also had two defacography studies. Both showed severe puborectalis dysfunction with complete failure to relax. I feel the urge all the time..all day every day, with terrible bloating and cramping I just can't get anything to come out. Ive also had the anal manometry and pudendal nerve studies that were normal. I was examined under anesthesia and they said that all the pelvic floor muscles are underdeveloped, and i was probably just born that way. I guess ive always had some problems with constipation but it has just been markedly worse the last 4 years or so.

Have you ever heard of anyone having success with the Ace procedure. I haven't read a lot of positive things about it. I don't want to have multile surgeries.. I would like to get it over with just one and move on with my life.

I think that I would really be much happier with a colostomy. It's scary to think about though. I guess I'm not sure what questions I have, other than do you/others really feel better after surgery and how does it impact your day to day having a bag?

It's just nice to know there are other people out there- I feel so alone with my problems. I am so glad I found this site!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2009 4:11 PM (GMT -6)   
jj,

i'm glad you've found this site too. it's the best place with wealth of information. i've learned a lot here.

i'm so sorry you are in so much pain. you're so young, it's so unfair you have to hold back your life bc of it. i've also haven't had ANY quality of life in the past 15 yrs. i'm 35 yrs old and since i was 20 i can't lead a normal life. it's really sad.

from what you're saying it seems your colon is doing a good job, but your rectum is totally obstracted. this condition can significantly effect the quality of life and ruin it!! i so feel for you. do you have touble releasing gas too?

i haven't had sugery yet, except for a prolapse of the rectum and rectocele repair. i have colonic inertia, which means my transit time is way too long. the zits marker test showed i had all 24 markers in the left colon after 10 days. my colon is simply paralized and not doing it's job of pushing the stools. i'm planning to have a colectomy and my small intestine attached to my rectum. hoping to have no bag. i too have a certain level of anismus though (the puborectalis doesn't relax enuogh), but my drs think it's not too sever and that it won't bother me after the colectomy. i truly hope so, cause if it does, then i may too need a colostomy.

i've never heard about the Ace procedure.. what is that? is it a surgical thing? can you describe it for me?

so as you can see, i don't have a bag, but if you want to ask ppl that do, then i suggest you start a new topic with questions about having a bag.

best wishes to you and please keep us posted on your progress of finding a solution.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/26/2009 5:06 PM (GMT -6)   
Hodaya,
Wow, it sounds like you've had a rough time! I hope the colectomy works for you! That would be great! When are you having the surgery? I'd like to hear how it goes.

Yes, I also have trouble passing gas as well, which can be pretty painful. Do you have this problem too?

The ACE (anterograde colonic enema) procedure is where they take your appendix, which is attached to the beginning of your colon, and they bring it out through your belly button. Then you are able to flush your colon through your appendix. If you don't have your appendix they can use an artificial conduit. I don't think this will work for me since my problem is not motility or inertia, it's just the anismus. Maybe this would be an option for you. Talk to your surgeon or otther peoplr though because I haven't been impressed with follow up studies.

I will keep you posted about my progress. I am starting biofeedback this week and then we'll go from there.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2009 5:27 PM (GMT -6)   
i don't have a date yet.. it's gonna take a while. i'm hoping to have it in August of this year. but when i do, i'll sure keep you posted.

yes, i also have trouble passing gas, but in certain positions it comes out easier, lol.

this ACE procedure is totally unfamiliar to me. i hope neither you or i need it..

good luck with the biofeedback, i hope it works for you!!!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/27/2009 5:38 AM (GMT -6)   
Thank you so much!! Thanks for all your responses!

I hope you get a date soon!!! Waiting to find out when something will happen is so difficult!

I also hope that the ACE procedure can be avoided!

I'll keep you posted on progress with the biofeedback.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/27/2009 8:37 PM (GMT -6)   
I don't have constipation issues, but just wanted to stop by and wish you well on the biofeedback!

Welcome to HW.com --- ask any questions you may have... I'm sure there are others on this board that can give you some suggestions.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/27/2009 8:49 PM (GMT -6)   
Peggy,
Thankyou so much!! I really appreciate all the support! It's so nice to be able to talk about these things. I feel like no one else really understands how isolated problems like this can make you feel.

I am starting to realize that maybe I'm not completely alone in all this.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/29/2009 11:57 PM (GMT -6)   
No, you are not alone. Keep visiting us, and asking any questions you may have. As others see your post, you will be amazed at how many others there are that are in your shoes.

Hang in there!!! HW.com to the rescue!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/30/2009 12:19 AM (GMT -6)   
Thankyou so much Peggy!! I think I'll be sticking around. 

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 3/30/2009 3:28 AM (GMT -6)   

Hello, welcome to healingwell also.

I do hope you get help with the biofeedback also.  I understand how frustrated you must feel, but dont let anyone tell you there is nothing wrong with you - i have experienced the same for the last 10 years - just keep pushing for answers.  

At the end of the day you have to try everything possible  to help yourself.  A bag is a last resort really if all else fails.  I have a temporary bag so my internal join can heal.  its just been nearly 3 weeks since surgery so i am still recovering, but the thing is it is great not going to the loo and all the associated pain and cramps and stuff.  But for you it would be a last resort to get your life back.  There are loads on here (summerstorm to name one), who have them for life - and it appears they all get on doing everything they ever wanted!

Good luck my dear. x


Karen 46 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
17 MARCH 2009 - re-scheduled (but I wont hold my breathe :( )
 
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
 
 


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/30/2009 1:17 PM (GMT -6)   
Karen- Thank you so much for the welcome!
 
Everyone here has been so nice.
 
I don't know what the right answer will be for me. I think I have tried everything there is to try except this biofeedback that I am starting. After that, I don't know what's left to try. I am so deperate for the answer..I can't live like this anymore. Today has been an especially bad day. It hurts to move, to talk. I try to act like nothing is wrong, trying to be happy and cheerful to everyone around me, but inside I just feel like I'm falling apart. I feel like I have just lost all control...
 
Sorry to just vent my feelings, sometimes I don't know who to tell them to...I think it just feels good to get them out there.
 
Thanks to everyone for your stories and advice!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2009 2:21 PM (GMT -6)   
feel free to vent any time, vent away.. that's what we're here for and this forum. we understand each other's pain and willing to share. we can learn from each other's experiences too and sometimes can give really good advice too. so always tell us about what you're going through, cause there's always a chance that someone has a good offer to help.

what about suppositories? do those help you?

i hope you feel better soon.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/30/2009 2:58 PM (GMT -6)   
Thanks Hodaya- I think I was having a bit of a breakdown moment. Thanks for listening.

Yes, I've tried suppositories, quite a few times actually, and they don't help. They make the urge to go worse, but I still can't get anything to move.

I guess I'll just keep my head down and keep on trucking.. I continue with biofeedback on Wednesday, and go back to see my doctor in 3 weeks. I'm just staying focused on that day...hoping answers will come soon.

Thanks for listening and entertaining my whining =)

I hope your mom is doing better. This must be so difficult for you to deal with on top of everything else.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/30/2009 3:08 PM (GMT -6)   
yes jj, i'm very stressed these days, but i'm coping.

i can't believe even suppositoried do nothing for you, you poor thing. you really can't go on like this. i'll pray the biofeedback helps you.

i'm sorry, but what does "entertaining my whining" means? (i'm from israel - English is not my language)
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 3/30/2009 7:14 PM (GMT -6)   
Whining is kind of like complaining, and by entertaining, I just meant listenening. So basically thanks for hearing my complaints =) hope that makes sense? I'm not very good at vocabulary =)
 
 

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/31/2009 12:12 AM (GMT -6)   
that's o.k.. i got it, thanks!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

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