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Old 05-17-2010, 01:49 PM   #1
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hanita HB User
obstructive defecation syndrome

hi everyone im new to this site ? is there anyone on here suffering this dreadful complaint , ive had hystrectomy , rectopexy , starr procedure , for pelvic organ prolapse , im currently on nhs waiting list to have an ileostomy because im not allowing this to ruin my life anymore im a 42 year old mum of 2 id be grateful if i got some replies as i dont know anyone who , has this disorder ? nerves in my bowel not functioning properly . thanks hanita xx

 
Old 05-27-2010, 05:32 AM   #2
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Re: obstructive defecation syndrome

Hi I have also recently been informed I am also suffering with this. I was informed that I had IBS 5 years ago and up until now just thought my problems were all related.

I am due to have the mesh rectopexy in aug by Mr Lindsey in Oxford. It was planed for me to have the STARR procedure in March this year, however my own GP wanted me to get further opinions with other consultants. From their findings I am now due to have the mesh procedure.

I am 26 years old and have no children. Have always suffered with my bowel and up until now felt completely alone.

Have you also had this procedure done? Do you also suffer with your bladder as I have also been told that I have Cystocele.

take care

Loulou

 
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Old 06-06-2010, 04:10 PM   #3
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Re: obstructive defecation syndrome

hi lou lou to be honest with you , ive had the starr also had rectopexy using the mesh had hystrectomy but its not helped because my nerves in my bowel not functioning properly , also its not helping the ods ? my muscles in my back passage dont work very good neither ? not all women are the same some of these surgerys do help i suppose its a matter of how bad things are in that dept im sick of being like this so my doc says id be better off with a stoma so im going to give me back some quality of life . at this stage im running to get there for both ? are you the same ? when this thing started before i got a diagnosis i lost about 6 stones in weight and felt very weak and poorly at the time my bowels had virtually stopped i kept obstructing i know it sounds stupid , but i didnt know i was constipated i only know that now with the amount of stool that does exit the body .. but i always felt bloated and off colour ... boy was i glad to get a diagnosis .................

 
Old 07-24-2010, 03:54 PM   #4
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Re: obstructive defecation syndrome

Hello - Sorry to hear you are dealing with this. I also have suffered from bowel problems (constipation) for what is going on 12 years. I am home now, post op for a sacracoplopexy.

This was the 5th surgery since symptoms began. To tell you the truth, In the beginning, I did not even know I was constipated. My first symptoms were an awful foul smelling burping (like rotten eggs). It started during my first pregnancy and continued through my 2nd.

Unfortunately, these problems seem to be extremely complicated and I have found diagnoses are not always correct. You really have to find a colon rectal doctor that is willing to rule out everything before moving forward with any surgery. Sure wish I had taken my own advice.

My Gynecologist diagnosed me first with gallbladder stones and just after my 2nd was born I had a cholecystectomy. This did not resolve the problems.

I spent years seeing Gastro docs who found nothing other than the "you have IBS" and offered no help. I finally got to a Colon Rectal doc another GYN who diagnosed me with uterine prolapse and I also needed a small bowel repair. We moved forward with that surgery in 2003. it did not resolve the problems. The Colon Rectal doc then diagnosed me with intussupception (sp) and we did a rectal suspension in 7/2003 which also offered no relief.

Five years passed and I found another doctor who diagnosed a sigmoidocele, and we did a hemi-colectomy in 2008.

Well here I am today in July of 2010. Not only did i have have an enterocele, rectacele, cystocele, peritonealcele - basically my entire pelvic floor had collapse and with each attempt to defecate, my small intestines, and colon would come down and smash into my rectum causing the obstruction. This surgery ultimately yanks everything up using a mesh suspension which attaches to the sacram. It was complicated in me, because the rectal suspension previously performed used the same procedure with attaching mesh to the sacram.

Needless to say be very careful before you take any doctors word. My first surgeries in 2003 were at a hospital in NE Massachusetts. I went back to them, between Jan 10 and May 10 and was kicked to the curb by more than 5 doctors. Each of them did not find anything wrong with me, and in all honesty were not interested at all with the problems I was encountering. They chalked it up to incurable and one actually suggested I was more emotionally distressed than physically distressed.

In May of 10 I had a dynamic MRI which clearly showed the mechanical obstruction. I sure am hopeful this works.

If you are told to do a defagram more than once, demand a dynamic MRI. I had at least 15 defograms over the 11 years - and I truly believe if they had done the MRI sooner it would have greatly changed the way things played out.

I wish you luck in your search for answers wish you the best.

43 year old mom of 2.

 
Old 08-04-2010, 02:19 PM   #5
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tinker47 HB User
Re: obstructive defecation syndrome

Where can you get that test. Alot of colon and rectal docs do not do that. A dymanic MRI ?

 
Old 08-05-2010, 04:57 PM   #6
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Re: obstructive defecation syndrome

Quote:
Originally Posted by tinker47 View Post
Where can you get that test. Alot of colon and rectal docs do not do that. A dymanic MRI ?

I had it done in Boston - St Elizabeth's Hospital

 
Old 08-10-2010, 04:30 AM   #7
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Re: obstructive defecation syndrome

What exactly is a dynamic MRI? Did you uro gyn give it to you ? I am having trouble finding out what it is . Thanks
sue

 
Old 08-10-2010, 05:19 AM   #8
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Re: obstructive defecation syndrome

Hi all,

I have been told by my docs that I have ODS. Had a hysterectomy last year (but not due to the ODS) but it made the ODS worse. Had the STARR procedure done 2 months ago but it has made no difference at all (if anything things have got slightly worse).

So basically - I am eating really healthy and drinking buckets of water. I can not have any sort of normal bowel movement and have gone up to 2 weeks in the past without one (before drastic action had to be taken). The only way I have found to 'empty out' is by taking one Ducloax tablet at night. The following day after taking it - the initial bowel movement is agony and takes ages to pass through and then following that for the next few hours I suffer with diarrahea, my stomach is crampy/windy and my 'bum' and insides are very painful. In between these episodes I am passing a kind of thick mucus which is sometimes greenish and sometimes pinkish with blood, and it has an awful smell. I pass this mucus through the back passage when having a wee, or through flatulence or sometimes it just leaks out. No idea what this is or why this happens.

So just wondering if this is the symptoms of ODS and do other people suffer like this. My doc has explained that basically what is happening is the faeces is getting obstructed and cant pass through so it blocks everything up. The ducolax tablet is just like a bomb that explodes and clears the blockage. The STARR was supposed to solve this problem but it hasnt. Any advice or help would be appreciated as I am losing all faith in my doc at the moment. Cant continue on like this as its ruining my life and I spend more time on the toilet than I do with my family.

 
Old 08-17-2010, 05:32 PM   #9
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Re: obstructive defecation syndrome

Dear the misses,

So sorry to hear of your struggle. I know first hand about all those symptoms. It is awful when doctors do not understand the impact symptoms like these have on your life from sex, to work to everything.

Now that I am 1-month out from the Sacracolpopexy I can tell you that I have improved significantly. No more explosive blow-outs (from the Miralax) just regular formed stool. Unfortunately, all the surgeries (specifically the Rectal Suspension done shortly after the hysterectomy) has left my rectum pretty much useless. I have to digitally remove the stool, but at least it is formed and comes right out. The mucas and other weird tissue looking stuff has diminished too.

My diagnoses have been plentiful over the years. In 1999, it started with you have Gallstones and I had my gallbladder out, then it was IBS, (that lasted for years), then it was your cervix is falling out and your uterus is prolapse and I needed a small bowel repair, then it was an Intusseption (sp) (which resulted in the rectal suspension surgery - this particular doctor kept sending me to see The Stoma Nurse and said a colostomy was my only hope of living a normal live.) Then it was a sigmoidocele, and I had a hemi-colectomy. Then this year, it was every prolapse a woman could possibly have including rectocele, peritonealocele, cystocele, etc. A complete Pelvic floor collapse. He described the results as "The Medial Compartment has completely collapsed and due to the fact the patient (me) was ready for a complete Colostomy) he recommended this surgery. And here I am today - not perfect, but better nevertheless. I could not imagine having a bag on me all the time. What an awful thing for any person to go through. And I realize there are probably many others who opted to do it, but I just could not make that decision. It was either fix it, or I am gong to die from it.

Do you have access to a Pelvic Floor Clinic? They have them here in Boston MA and they solely deal with Pelvic Floor Issues as well as gastro-bypass surgeries for obese women.

Even the doctors that did my previous surgeries would not help me. The one that did my surgery in 2003 actually had his secretary call me the night before our appointment (Feb 10) to tell me he decided to retire. They said one of the other doctors would review my chart and they would reschedule me, and I saw 2 more doctors in that department. Both offered nothing. Completely unwilling to do anything. One actually told me to try yoga. Also said, You've had 3 surgeries, like there is some 3 strikes your out policy. I saw 3 colon rectal doctors and 2 urogynecologies in the 6 months leading up to this surgery and none of them would help me. This does not take into account all the gastroenterologist doctors I have seen (we won't go into all the nasty tests they put you through, my god I must have seen 20 of them).

I went back to the surgeon who did the hemi-colectomy in 2008 and begged him to help me. They did the usual defagram at the other hospital and I brought all results, and notes from the other doctors I had seen. I asked him if there was anything else we could do and he ordered the dynamic MRI.

When I met with him in early June he asked if I wanted to do the surgery before the 4th of July of afterwards. Finally a true diagnosis. No-one could deny what that XRay showed - but I have to look back over the years and I know with all the surgeries I had, damage was done.

I wish you the best and hope you find your answers. I am convinced something happened during my first pregnancy. I always felt my supporting structures failed during that pregnancy and this was the result. Hope you are able to find a medical professional who will listen to you and not look at you like you are a crazy person. I know I ran across many in my search for answers.

Best regards,

 
Old 08-18-2010, 04:24 PM   #10
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hanita HB User
Re: obstructive defecation syndrome

hi im so sorry you are all suffering ive read all youre posts , ive had my op on the 23rd of july a colostomy i know it was drastic but believe me ive been to all docs colorectal, pelvicfloor clinic , gyno , gastric , and tests after tests and they all said the same i was waiting . 3 years for a diagnosis told ibs so basically things just kept getting worse and worse when eventually i got the diagnosis of pelvic organs prolapse i had surgery after surgery but nothing improved apart from i could walk better ? everything prolapsed ? so they put everything where it should be apart from hystrectomy where they actually removed an organ ? i suffered i felt ill all the time and its taken 5 years of my life not being able to go out for fear of an accident , must say for the 1st time in 5 years ive sat down and enjoyed a meal without being bloated or feeling sick or being sick its given me a life and also its given my husband his wife back and so on its not the end of the world im now living a life

 
Old 08-19-2010, 07:08 AM   #11
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themisses HB User
Re: obstructive defecation syndrome

Thank you for your replies. It is good to know that I am not alone in this awful situation. The worse thing is not being able to talk about it to friends and family because the symptoms are so personal and graphic that it is not something that is easy discusssed. Even my husband does not know the full extent of my inability to have a BM (some things are best left unsaid). I just dont know what my next option is and I am just scared that if I have more operations and procedures,that things could get worse. This forum is a pure life line at the moment to me and I thank you all for your advice.

Again, I know it is hard to talk about this issue, but could some of you describe your symptoms etc and give me any tips of self-help that might ease the problem i.e. diet, supplements etc.

 
Old 08-20-2010, 05:18 PM   #12
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Re: obstructive defecation syndrome

hi my symptoms was feeling full up bloated after eating very small amount ? feeling i'll especially in the mornings , feeling dizzy , tired , no energy , struggling with bm constantly , virtually impossible to have bowel movement fear of leaving the house , scared of accidents incontinence ? mucus , blood , obsessed didnt know this but its a symptom of this ods i practically lived on the toilet .

 
Old 01-19-2011, 04:57 AM   #13
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marion samwell HB User
Re: obstructive defecation syndrome

Quote:
Originally Posted by hanita View Post
hi everyone im new to this site ? is there anyone on here suffering this dreadful complaint , ive had hystrectomy , rectopexy , starr procedure , for pelvic organ prolapse , im currently on nhs waiting list to have an ileostomy because im not allowing this to ruin my life anymore im a 42 year old mum of 2 id be grateful if i got some replies as i dont know anyone who , has this disorder ? nerves in my bowel not functioning properly . thanks hanita xx
hi unfortunatly me, its sereverly impaired my quality of life. Ive got a life of a old woman and im only 48. I was going 2 london st marks hospital, thats the best place 2 go. Went 3times , when i had a phone call, the nhs has stopped my transport. And theres no other way i am able 2 get there. So the treatment has stopped. how long have u had ods?

 
Old 01-19-2011, 05:11 AM   #14
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marion samwell HB User
Re: obstructive defecation syndrome

hi, i have ods and its severly impaired my quality of life. my symptoms are nasty. I have evacuation problems, i dont know i need the toilet. bowel in the vagina,, bloated out heavy in the abs, since laxatives i can feel where the colon is laying and i take the weight of it with every breath. Ods is medically underminded. It makes me feel unwell and suicidal. It impairs your qualilty of life. Laxatives brought on more problems they should never be given out long term. What treatment r u receiving?

 
Old 03-10-2011, 05:21 AM   #15
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Jean090680 HB User
Re: obstructive defecation syndrome

Quote:
Originally Posted by hanita View Post
hi everyone im new to this site ? is there anyone on here suffering this dreadful complaint , ive had hystrectomy , rectopexy , starr procedure , for pelvic organ prolapse , im currently on nhs waiting list to have an ileostomy because im not allowing this to ruin my life anymore im a 42 year old mum of 2 id be grateful if i got some replies as i dont know anyone who , has this disorder ? nerves in my bowel not functioning properly . thanks hanita xx
I went through nearly the same situation 12 years ago. I was 36 years old with 2 small daughters and had been very ill battling; what at that time was called constipation. A very very serious understaememnt.

After surgery I was told that almost all of the nerves in my large in testine had died and they had no idea why. The large intestine was 3 times its's normal width and twice it's normal length. It was beyond it's ability to function.

Back to the point....I had a "subtotal colectomy" and my world and life improved 1,ooo fold. I can't say that I have never had any more problems with my bowels because I have and likely always will. However for approximately 4-5 years I felt great. The next 3 - 4 years were basicaly good other than attacks from partial blockages due to fissures. In 2009 I finally had to have more surgery because the fissures had caused a complete obstruction. Since that second surgery things have not been working well and I am back to trying to finda doctor who actually understands and knows about pseudo obstruction. I do not believe that the secomnd surgery caused the problems I am now having because right after the second surgery the doctor told me that there were very serious motility issues and that i needed to see a gastro doctor when I was dischatrged. Well it is 3 yrears later and my motility continues to devcline. I am very fortunate that i have a Fabulous accupuncturist who hhas been able to help significantly. You may want to explore accupuncture as an alternatibve or a companion to the surgery,.
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