[freeme]

hi i have put a few post's up but to be honest i am so fed up with the years of trying to find out how to make myself feel better the money i have spent on endless buying at the chemist hopeing that this time it will work loads of prescription drugs that dont work,no life no job,so hard to have a bowel movement sometimes i dont have a bm for over a week and thats with takeing lacsatives every night,suffering every day its endless never knowing if it will ever go away.i really want to have my large bowel out now as i have had 5 years of misery and dont want to go on like this,if i mention this to my doctor can they refuse it?as i really feel this is the only way for me as im getting extremly depressed to and i have 2 children and i feel such a burden on everyone because none of them understand.please if any of you have asked your doctors or have any advice for me please reply am so at a loss with this now.

 

[Kathleen M.]

Have you had a sitz marker test and any pelvic floor testing?When constipation is severe sometimes you need those. If the colon motility is basically gone they can remove most of the colon (only after testing and making sure nothing else works) and that helps some people. If the problem is at the outlet (just can't pass stool) fixing that often makes the constipation a lot better.Usually with slow transit issues they will put you on a low residue (low fiber diet) with lots of osmotic laxatives before surgery to see if keeping the amount of stuff in the relatively low, but keeping it very wet helps with the discomfort and makes the most of the colon activity you do have.If you are depressed (especially if suicidal, and you sound like you could be headed that way) talk to the doctor and get help for that. Depression makes all health conditions harder to deal with. Zoloft can sometimes be a good antidepressant for those that are constipated as it tends to be the most likely one to make the colon get a move on (most likely to cause diarrhea in the average healthy person).

 

[freeme]

Have you had a sitz marker test and any pelvic floor testing?When constipation is severe sometimes you need those. If the colon motility is basically gone they can remove most of the colon (only after testing and making sure nothing else works) and that helps some people. If the problem is at the outlet (just can't pass stool) fixing that often makes the constipation a lot better.Usually with slow transit issues they will put you on a low residue (low fiber diet) with lots of osmotic laxatives before surgery to see if keeping the amount of stuff in the relatively low, but keeping it very wet helps with the discomfort and makes the most of the colon activity you do have.If you are depressed (especially if suicidal, and you sound like you could be headed that way) talk to the doctor and get help for that. Depression makes all health conditions harder to deal with. Zoloft can sometimes be a good antidepressant for those that are constipated as it tends to be the most likely one to make the colon get a move on (most likely to cause diarrhea in the average healthy person).

 

[freeme]

Hi thanks for the reply and no i havent had those tests it seems like the doctor has just left me to get on i attend pain clinic and that is the doctors way of saying we cant do anymore its the end of the road so thats it,i have been admitted to hospital by my consultant because of the pain i have been in and they kept me in for a week and then did 2 xrays which showed i was constipated and then a scan which i pushed for but nothing there plus my tum was hugly distended all the week i was there,so i got sent home just the way i went in,none of them have mentioned about a bowel removeal,no actually my consultant said once i bet you just want the bowel out dont you and i said definately and he said it would cause even more pain and then changed the subject,its just i have tried so much plus had a dietician that lasted 2 sessions and she said its not diet dont worry about food its just more stress on you,but i do know a the foods to avoid,the consultant just said we will admit you to hospital when it gets bad to give you a rest and im like its every day its bad all the time,but as usual they dont listen.as you metioned about pelvic floor i had a hysterectomy just over a year ago due to over heatlh reasons,they were reluctant to do cos of the ibs but it had to be done anyway,so what i mean is the ibs was as bad then as it is now so i dont think thats a reason.But im just so fed up struggleing with this my life is ruined cos of it :'(

 

[alwayshappy]

Hi thanks for the reply and no i havent had those tests it seems like the doctor has just left me to get on i attend pain clinic and that is the doctors way of saying we cant do anymore its the end of the road so thats it,i have been admitted to hospital by my consultant because of the pain i have been in and they kept me in for a week and then did 2 xrays which showed i was constipated and then a scan which i pushed for but nothing there plus my tum was hugly distended all the week i was there,so i got sent home just the way i went in,none of them have mentioned about a bowel removeal,no actually my consultant said once i bet you just want the bowel out dont you and i said definately and he said it would cause even more pain and then changed the subject,its just i have tried so much plus had a dietician that lasted 2 sessions and she said its not diet dont worry about food its just more stress on you,but i do know a the foods to avoid,the consultant just said we will admit you to hospital when it gets bad to give you a rest and im like its every day its bad all the time,but as usual they dont listen.as you metioned about pelvic floor i had a hysterectomy just over a year ago due to over heatlh reasons,they were reluctant to do cos of the ibs but it had to be done anyway,so what i mean is the ibs was as bad then as it is now so i dont think thats a reason.But im just so fed up struggleing with this my life is ruined cos of it :'(

hi freeme,sorry to hear about your problem. when it gets to a point that nothing helps any more, then removing the colon can be an option for you. seek for a colorectal surgoen's opinion. the tests you should ask for:anorectal manometrydefecographybarium enemacolonic transit time test (zits marker)have you ever had a colonoscopy? if not, then you should, just to rule out anything else.i hope you can find a good colorectal surgeon to really listen to you and work with you, cuz it sounds like more than just constipation to me. good luck!

 

[freeme]

Hi thanks for the reply,yes i have had a barium enema a camera down to the stomach a sigmoidoscopy and a barium swollow,the barium swallow showed that my digestive system is extremly slow and in the end the nurses rolled a football around on my tummy to get it to move quicker cos it took so long,but yet that was about 8 months ago and i have just been left to deal with the pain also i have inflamation if the stomach but they never told me that until i kept on about the top abdominal pain that radiated straight through my back it was so extremly painful i went on like that for a year until finally a doctor looked at results i had had a year previous and said oh yes you stomach is inflammed so then gave me tablets so thank goodness they worked but i do get that pain here and there when my system is backed up but crikey they left me ages,i have tried to go without these tablets but i cant the pain just comes straight back,i still suffer extreme pain in my abdomin and i have been on fentynl pain patch for about 2 years now for the pain and they dont even work very well im constipated all the time i go about once a week if im lucky and i take laxatives every night,i get so backed up that i feel like i cant breath properly my tum gets so swollen and then when its not so backed up i can hardly walk cos the constipation has moved to the lower part so i feel like im carrying bricks about in my lower abdomin it really hurts,i feel i am not getting the help i should at all,i cant do anything with my kids and cant go out hardly and i cant work as the pain is every day my life is ruined because of this my boyfriend is great but i do worry he will get fed up and leave me,my parents arent very suportive,i really want my bowel taken out because i have no quality of life like this but i am afraid to ask incase they turn me down i am so desperate to get this all to end but they all just seem to tell me to get used to living like this and there is no way i can,why should i have to this is no life at all for me,i cant live with this pain its not fair.

 

[alwayshappy]

Hi thanks for the reply,yes i have had a barium enema a camera down to the stomach a sigmoidoscopy and a barium swollow,the barium swallow showed that my digestive system is extremly slow and in the end the nurses rolled a football around on my tummy to get it to move quicker cos it took so long,but yet that was about 8 months ago and i have just been left to deal with the pain also i have inflamation if the stomach but they never told me that until i kept on about the top abdominal pain that radiated straight through my back it was so extremly painful i went on like that for a year until finally a doctor looked at results i had had a year previous and said oh yes you stomach is inflammed so then gave me tablets so thank goodness they worked but i do get that pain here and there when my system is backed up but crikey they left me ages,i have tried to go without these tablets but i cant the pain just comes straight back,i still suffer extreme pain in my abdomin and i have been on fentynl pain patch for about 2 years now for the pain and they dont even work very well im constipated all the time i go about once a week if im lucky and i take laxatives every night,i get so backed up that i feel like i cant breath properly my tum gets so swollen and then when its not so backed up i can hardly walk cos the constipation has moved to the lower part so i feel like im carrying bricks about in my lower abdomin it really hurts,i feel i am not getting the help i should at all,i cant do anything with my kids and cant go out hardly and i cant work as the pain is every day my life is ruined because of this my boyfriend is great but i do worry he will get fed up and leave me,my parents arent very suportive,i really want my bowel taken out because i have no quality of life like this but i am afraid to ask incase they turn me down i am so desperate to get this all to end but they all just seem to tell me to get used to living like this and there is no way i can,why should i have to this is no life at all for me,i cant live with this pain its not fair.

if you take laxatives and still go only once a week, sounds like colonic inertia to me. where are you from? have you seen a colorectal surgeon before? if not, then that's the exact person you should see and ask for these tests i mentioned.you're right, you shouldn't be suffering like this and you should NOT get used to it!! i believe a surgery can help you, i have no doubt. so cheer up, cuz there IS a way to help you! makes me so mad when ppl who know nothing about this, what it's like when you just cannot go, tell you to just get used to and live with it.... why don't they just keep it in for weeks and see how it feels like....???? grrrrrranyways, i had colonic inertia for 16 yrs, it was 16 yrs of h***ll. i finally had surgery and am feeling wonderful.

 

[freeme]

Thank you so much for replying.i am from southampton,hampshire,england,and no i havent seen a colorectal surgeon,do you have private health care?because its the nhs over here and i can't afford a private doctor so much money and as i cant work i cant raise the money to go private,it just seems to me that they don't want to do any more for me its just leave me to suffer,i cant except that i have to carry on like this its lifetime torture,i had never heard of colonic inertia,see all my doctor and consultant at the hospital has said is its ibs and thats it,and he said i bet you just want the bowel out dont you and i said yes i do and he replied well that wouldnt be a good idea cos it will make the pain worse,so basically thats it they just give me different tablets to try here and there and nothing works,the consultant says my digestive system just doesnt work anymore so if it doesnt why do i need my bowel i am lost they say so many different things,all i want is to wake up one day and have no pain,im not quite sure how to go about saying to the doctors about this colonic inertia because i have told them things i think it may be in the past and they just ignore me its so hard cos i dont have anyone to support me and come to appointments with me to tell them how much im suffering,i just feel so alone.im so glad to hear you are all better now,fantastic that you finally got there to be free of the endless pain x

 

[alwayshappy]

Thank you so much for replying.i am from southampton,hampshire,england,and no i havent seen a colorectal surgeon,do you have private health care?because its the nhs over here and i can't afford a private doctor so much money and as i cant work i cant raise the money to go private,it just seems to me that they don't want to do any more for me its just leave me to suffer,i cant except that i have to carry on like this its lifetime torture,i had never heard of colonic inertia,see all my doctor and consultant at the hospital has said is its ibs and thats it,and he said i bet you just want the bowel out dont you and i said yes i do and he replied well that wouldnt be a good idea cos it will make the pain worse,so basically thats it they just give me different tablets to try here and there and nothing works,the consultant says my digestive system just doesnt work anymore so if it doesnt why do i need my bowel i am lost they say so many different things,all i want is to wake up one day and have no pain,im not quite sure how to go about saying to the doctors about this colonic inertia because i have told them things i think it may be in the past and they just ignore me its so hard cos i dont have anyone to support me and come to appointments with me to tell them how much im suffering,i just feel so alone.im so glad to hear you are all better now,fantastic that you finally got there to be free of the endless pain x

i'm from Israel and i also have only the NHS, but our NHS is really good. anyways, i have a friend in England, she also suffered with CI for years, she finally found a dr to listen to her. she had surgery more than 2 years ago and feels much better. her surgeon's name is Norman Williams in London. i'm not good with geography, so i don't know - are you close to London? i hope you can see this dr, BUT even if not, you can at least consult with him , so he can reffer you to one of his colleagues that are close to your area. there are many drs who are very reluctant about doing this surgery for CI, and it sounds like your drs are like that, but you do not have to accept this, cuz THERE ARE drs out there who will be willing to help you - you CAN also be free from this pain. you can also follow this link:http://www.healingwell.com/community/default.aspx?f=33&m=1871059&p=6 - this is a forum of dozens of women who had the surgery/on their way to surgery for CI. it's a very friendly and supportive group, i think you can benefit a lot from talking to others who has the same problem as yours. by reading through the pages, you'll be able to learn so much about CI, the surgery and it's outcome. i know this forum has helped me tremendously, it was life saving for me.please try to contact this dr and please keep me posted on how things are progressing for you. i wish you all the best and my prayers are with you!

 

[annie7]

freeme--oh yes you do need to see another doc who can test and treat you for colonic inertia. you're in the uk--many people on this board have posted about seeing prof whorwell--they say he's on the nhs--say he's terrific--he's an expert and never gives up on people. here's a link to one of the threads about him and also a general info link about him. i hope you can get into see him or at least get a better doc--as always happy said--there is help out there! i'm in the usa--wish i were in the uk--i'd def go see him asap. good luck. http://www.ibsgroup.org/forums/index.php?/topic/123277-prof-whorwell http://www.medicine.manchester.ac.uk/staff/peterwhorwellalso another link on him and his staff: http://www.ibscare.org

 

[alwayshappy]

freeme--oh yes you do need to see another doc who can test and treat you for colonic inertia. you're in the uk--many people on this board have posted about seeing prof whorwell--they say he's on the nhs--say he's terrific--he's an expert and never gives up on people. here's a link to one of the threads about him and also a general info link about him. i hope you can get into see him or at least get a better doc--as always happy said--there is help out there! i'm in the usa--wish i were in the uk--i'd def go see him asap. good luck. http://www.ibsgroup.org/forums/index.php?/topic/123277-prof-whorwell http://www.medicine.manchester.ac.uk/staff/peterwhorwellalso another link on him and his staff: http://www.ibscare.org

annie, are you suffering with CI as well? if so, there are also so many great drs in the USA that can help you, have you tried to go to Cleveland Clinic or Mayo Clinic? i've heard they are the best. please follow the link i gave freeme, there are so many girls there from the USA that can recommend you of great drs. good luck to you too!

 

[annie7]

hi always happy --no i'm not at the ci point right now thankfully. just ibs-c. i can still move things out with laxatives or tegibs--tegaserod (zelmac/zelnorm)--my colon hasn't shut down completely yet. unfortunately we don't have anything like the nhs in the usa so i have to stick with docs approved of by my health insurance. my husband and i are both retired--he's sick, both our moms sick, lots of medical expenses for us so i can't afford to see any doc that my insurance won't pay for.so since it been successful, i am still following the protocol (laxatives as needed) set by the gastro doc i saw about five years ago--great guy-he is now retired.i always have felt that ci might be lurking in the future for me--hope not of course but because of that i try to keep up on ci info and have been so grateful to your for your very helpful and informative posts--truly you are an inspiration! you are a wonderfully optimistic example of what one can do with perseverance and research--you never gave up. you have been down a long long road and i am so happy you have finally found relief--that is wonderful--good for you! and yes i have been reading the colectomy links you have provided. thank you so much for all your help, advice, information and inspiration!

 

[alwayshappy]

hi always happy --no i'm not at the ci point right now thankfully. just ibs-c. i can still move things out with laxatives or tegibs--tegaserod (zelmac/zelnorm)--my colon hasn't shut down completely yet. unfortunately we don't have anything like the nhs in the usa so i have to stick with docs approved of by my health insurance. my husband and i are both retired--he's sick, both our moms sick, lots of medical expenses for us so i can't afford to see any doc that my insurance won't pay for.so since it been successful, i am still following the protocol (laxatives as needed) set by the gastro doc i saw about five years ago--great guy-he is now retired.i always have felt that ci might be lurking in the future for me--hope not of course but because of that i try to keep up on ci info and have been so grateful to your for your very helpful and informative posts--truly you are an inspiration! you are a wonderfully optimistic example of what one can do with perseverance and research--you never gave up. you have been down a long long road and i am so happy you have finally found relief--that is wonderful--good for you! and yes i have been reading the colectomy links you have provided. thank you so much for all your help, advice, information and inspiration!

oh i'm so glad you're managing your C

that's great! as long as you find relief and have stuff working for you, then it's better to avoid surgery. if i had something that worked for me, i wouldn't have gone for surgery either. thanks so much for your kind words, well i'm really glad i could help. that's the goal.

 

[freeme]

Hi annie7,thank you for your reply,how do i get to see this profwhorwell,as im am in need of help more than my doctor and consultant are doing for me,i am on nhs does he work through the nhs because i dont have the money to go private,i so badly want to get this problem sorted out im so down with it all.

 

[annie7]

well i'm not in the uk but someone on the board said yes he's on the nhs and also said : "I too was referred by my GP through me asking to be.I e mailed Prof Whorwell and he told me to ask my GP to write a letter to him and he did.It took a couple of months but was worth it."this is from that ibs forum link i posted...people posting about him and about seeing him and saying he was on the nhs. http://www.ibsgroup.org/forums/index.php?/topic/123277-prof-whorwellhope you can get in to see him...sounds like there may be a bit of a wait but as the one poster said, it's worth it.good luck.

 

[freeme]

oh i see,so i can email him cause there is an email address on one of your links for him but wasnt sure to email him or not but yes i will get on to doing that,is there anywhere nearer than manchester to see him as i dont drive and its a long way from southampton,once again thank you

 

[annie7]

sorry i can't answer that question--maybe e-mail him or his office to find out or hopefully someone here on the board who has seen him can answer that. here in the usa some docs travel around and see people in different areas--not sure if they do that in the uk? if he doesn't travel around maybe at least he or his office would be able to recommend a really good, competent,caring nhs doc in your area who can help you--that would be worth a try.i know what you mean about the travel though--i can't afford to do that either plus my insurance won't pay for what they call "out of network" docs.

 

[annie7]

or you could phone his office too. on one of those links it has contact info: Contact us Neurogastroenterology Unit Wythenshawe Hospital Southmoor Road Wythenshawe Manchester M23 9LT Tel: 0161 998 7070 http://www.ibscare.org/contact.html