[prttywmn]

Hi all - I am new to this site and have had IBS C for over 10 years now. My colonoscopy described my large intestines as "tortuous" and that is exactly the way I have felt - "totured". I am 50 and am in good shape and height/weight proportioned. I really don't know what to say from here except that I have tried EVERYTHING and I mean everything without relief. I am considering surgery to have a complete colectomy. I have lived in severe pain with extreme bloating to the point of looking pregnant most of the time, with gas, cramps (I have burn marks on my abdomen from constant use of a heating pad), etc. I am not sure how much longer I can take it. I do not want a colostomy, but that beats the alternate which is "checking out". Yes - I have thought of suicide and I have been in counseling and on meds - so been there and done that route. I cannot date, I have no social life, and I work bent over my desk in agony all day. When not at work I am at home in bed. I don't know what to take or even what to eat anymore as I have attempted everything available in different combinations and NOTHING has worked. The docs say I am a chronic severe case. I am taking Amitiza 24 mcgs 2 x a day and sometimes as many as 25-50 Senekot laxatives a day. I have treid to cut back but am now laxative dependent. Has anyone else out there resorted to surgery and if so - did it relieve your symptoms ? They are wanting to leave the small intestines - but can IBS affect them too ? I appreciate any advise you have to offer. Thank you all and God bless.

 

[Kathleen M.]

IBS usually doesn't effect the small intestines and the HAVE to leave them because without them you will die because you will absorb almost no food at all, and stavation isn't fun. They bypass parts of it in some gastric bypass surgeries to reduce how many calories you take in but even bypassing a small amount tends to cause some nasty side effects if you eat just a bit too much or food that is a bit too rich.We've had a very few people with the surgery, as it is pretty rare and only for people with transit issues causing the constipation which is in addition to IBS. (most IBSers still pass stool in or close to 72 hours. people with transit problems may have stool in their for three or more weeks rather than three or so days).They need to make sure your anus/rectum works before the surgery as if you just can't let it out that won't be fixed, and doing biofeedback so you can pass stool often makes the constipation a lot better.If you haven't had a sitz market test that probably is the place to start and usually they want that before they yank the colon (as they can't put it back). However a lot of people can't go off the laxatives for that test very easily.Anyway it helps some people, but you have to be able to release stool and be lucky enough you don't get scars in the wrong places or amounts. The scar tissue afterward can cause more pain than the IBS and is even harder to treat.

 

[prttywmn]

Thanks Kathleen - I really appreciate your reply. The rectal/anal area is functional - and I stopped the laxatives long enough to do the sitz mark test. For 7 days I ate 3 meals plus snacks and did not eliminate at all - I actually felt septic from t days and 21 meals plus of stool in my system. All the markers stopped at the end of the small intestines. They think my large intestine is now "atonic" because of the chronic laxative usage. I had to take a whole 100 tab bottle of Senekot in order to go after the sitz mark test. That was one of the worse weeks of my life. I did a 21 day prayer and water fast with my church in January and for 21 days had NOTHING but water - and I had NO IBS symptoms AT ALL. It was the first time I can recall beign totally pain free and had a flat stomach. I wish I never had to eat again. I know the scarring is horrific as my sister in law had the surgery for ulcerative colitis. They have reversed her ostomy and she is fine now. I just have no life like this and it if surgery is my only answer - it is better than living this way, which is merely existing/surviving and not really living at all. I appreciate your response and thanks again for writing. Blessings ~ Pamela

 

[claire_louise]

We've had a very few people with the surgery, as it is pretty rare and only for people with transit issues causing the constipation which is in addition to IBS. (most IBSers still pass stool in or close to 72 hours. people with transit problems may have stool in their for three or more weeks rather than three or so days).

Sorry Kathleen, I'm not trying to be picky, maybe I've misunderstood your meaning, but I'm someone with IBS-C and no transit problems (I've had the test and everything came back fine) and I definitely go for longer than 72 hours without passing anything on a regular basis! Sometimes it can be up to two weeks with practically nothing. I actually wish I could have this surgery but as my transit is seemingly good I've been told it would be a disaster. I really feel for you Pamela.

 

[onedayatatime]

i have ibs-c for 5 years now i can go 7-9 days without a bowel movement,the pain is aweful and pain meds dont work i dont leave my house anymore and kids and hubby feel let down because i just cant function anymore.my grandma has this also and her doctor now has her on a diet of only a drink cant remember the name but it has all the nutriants she needs so she does not eat solid food anymore,she feels so much better no more pain no more bloating

 

[annie7]

oneday--is it ensure --or a similiar drink--your grandma is on? i started thinking about that for myself a couple weeks ago when i was having a terribly bad week when nothing--none of the laxatives etc-- worked. thankfully things are better now but only just. i'm 58 now and i keep wondering what i'll do when i get too old to handle all the laxatives, milk of mag etc safely. a totally liquid diet of ensure or something like seems like the way to go once i get to that point. unless of course we all get lucky and a great new drug comes out that will help all of us and is safe for elderly people to take as well.and yeah i'm one of those ones who--for right now at least--is too chicken to go off all the laxatives for a transit test. but if the laxatives finally quit working on me for good, then yes of course i'll take the test...my sympathies/empathies with all of you...and all of us here on the board.pamela--good luck with everything...hope and pray it all works out for you.

 

[claire_louise]

oneday--is it ensure --or a similiar drink--your grandma is on? i started thinking about that for myself a couple weeks ago when i was having a terribly bad week when nothing--none of the laxatives etc-- worked. thankfully things are better now but only just. i'm 58 now and i keep wondering what i'll do when i get too old to handle all the laxatives, milk of mag etc safely. a totally liquid diet of ensure or something like seems like the way to go once i get to that point. unless of course we all get lucky and a great new drug comes out that will help all of us and is safe for elderly people to take as well.

Does anyone have any more information about the drink? (Bearing in mind I'm in the uk). It sounds horrific not being able to eat anything at all, but at this point I'm quite willing to consider drastic measures. Is it only elderly people that can take it?

 

[annie7]

here's the the ensure website link. i don't know for sure about the age thing--maybe someone else does or a dr or pharmacist would of course. i'm about to leave for an across the state trip right now but i've always had the impression that ensure--and drinks like it--are for anyone who either needs to supplement their diet or won't/can't eat altogether maybe because of illness and yes certainly age--my dad was on it after his stoke since he got so he would refuse to eat anything--and the mil is the same now. you definitely would want to be sure you take in enough calories so as not to lose weight and also not compromise nutrition.http://ensure.com in the states you can get it in grocery stores, durg stores. you said you're in the uk. wasn't riddick--he's in the uk-- drinking something like fortisips (sorry that might not be the right name) when he was so nauseated he couldn't eat... you can also buy ensure online--amazon--drugstore.com-etc. i have a feeling nutritional drinks like ensure--if not ensure itself--are available in the uk.gotta go...i'll have to look into it more later....

 

[onedayatatime]

its not ensure she had to get a perscription for it.a doctor would know but i will post the name when i get it.i would miss eating but when i eat i hurt so maybe wouldnt miss it to much

 

[onedayatatime]

she called it an elemental diet and there are several brand names

 

[prttywmn]

Awe - thanks Claire Louise - my heart goes out to you as well ! Wow - I gotta hand it to you ... two weeks without going ?!? One week was all i could take and that was only because I had to do the sitz mark test. After 3 days I am in agony !!! So it sounds like you WOULD have the surgery if it were an option for you ?!? I am thinking that may be the only choice I have left. I have not made my mind up yet. Am still hoping for some answers and praying for a miracle !My thoughts and prayers are with you God bless, ~ Pamela

 

[Kathleen M.]

claire_louise--Odd that you normally don't pass one bit of stool at all (not even little bits) but in a few days you went enough times during the sitz market test to pass them?Or did I read your post incorrectly?It isn't 2 weeks between decent poops but not passing any stool at all for two weeks that would usually for most people indicate transit problems.A lot of people pass something, as unsatisfying and constipated as it may be, often enough they would be unlikely to fail a transit test, but usually if you only pass stool 2 times a month it is unusual to clear the sitz markers in a couple of days, especially with no laxatives at all.Just seems to be an odd combination of symptoms and test results.

 

[claire_louise]

A lot of people pass something, as unsatisfying and constipated as it may be, often enough they would be unlikely to fail a transit test, but usually if you only pass stool 2 times a month it is unusual to clear the sitz markers in a couple of days, especially with no laxatives at all.

Ah, I think that's where I misunderstood you - I do usually pass something in that time, just nothing substantial. I was surprised I'd passed the markers so quickly as well - I actually argued with my consultant and told him it couldn't be possible, but he convinced me that it must be!Pamela - I don't know a great deal about the surgery so I can't say for sure, but I would seriously consider it if it was an option for me. You really need to weigh up your quality of life now (provided it's likely to continue this way for the forseeable future) against what it would be like if you had the operation. Won't your doctor would discuss this with you, or at the very least refer you to a therapist or someone who can help you make the decision? I really hope things work out for you.Annie - thank you for the link. You seem to be helping me a lot at the moment, it's much appreciated!

 

[prttywmn]

I know how you feel onedayatatime - and if it weren't for me being a single parent with a handicapped son and no child support - or any other help for that matter - I would be applying for disability. It is not east working in pain or fun feeling left out because you are afraid to make plans for fear of having a bad flare up with cramps or bloating. I can't date or even socialize with friends because everything usually revolves around eating. Unfortunately liquid diets just don't give you all the nutrition or energy you need and you would have to stick with lactose free products which really limits your selection. I feel for you. I really do. Before I signed onto this site I had no idea there were so many people suffering with the same thing to the severity I was. I don't feel like the only one anymore - not that I would wish this on anyone ! I will be praying for us ALL !

 

[prttywmn]

Thanks Annie7 - I worry as well what I am going to do when I am older as far as having to depend on laxatives which I do now. It seems like no matter what I eat - IBS diet or not (and there are so many contradictions as to what is safe & what are triggers !) - I still have a severe reaction after everything I put in my mouth. Be careful with the Ensure though as dairy products can easily aggrevate, trigger, or exaccerbate your IBS symptoms (based on my experience) - and you can't live on it forever. I would recommend using the lactose free Ensure and just limit it to several days for times when you really need a break from the symtoms caused by food. Thanks for your post and good luck ! God bless ~ Pamela

 

[prttywmn]

Yes - Claire Louise , I have discussed it with my doc who recommended the surgery about 10 years ago and I have fought it ever since. I thought it would be better by now and kept praying they would develop or discover something new to make a difference. The Amitiza helped with the constipation but made the bloating and cramps much worse as it draws liquids into the colon and the distention was unbearable. I also had to take laxatives along with it - although I was able to reduce the # of laxatives while taking the two togther. I am off the Amitiza now and just have to take a higher number of laxatives - the senna "stimulant" kind as my colon has lost its tone - and can't contract on its own ... which is one reason the docs have recommended the surgery. I am going to another doc for a second opinion anda repeat colonoscopy and go from there ... and just keep praying in the meantime for a miracle healing ! Blessings to you all ~ Pamela

 

[twizz888]

prttywmn, i know your post was 4 years ago, but was wondering if you were still on this forum. i suffer in almost the exact way you describe. severe post-infectious ibs-c for 19 years, heating pad burns, no effective treatment, can't digest anything, pain is so bad i lost my successful engineering career ... i'm only 36 years old. did you go through with the colectomy? i'm starting to think that's my only hope to be able to have a life and not just exist.

 

[annie7]

twizz--

so sorry for all your problems and pain. it's all so hard to deal with, isn't it. i do hope you can somehow find some relief.

about prettywmn--she did have the colectomy. here is her post about it. i think this may have been her last post--not sure. i do hope she is continuing to do well. and hopefully we'll hear from her.

http://www.ibsgroup.org/forums/topic/129179-results-of-my-laparascopic-total-colectomy/#entry806936

 

[Dreamcatcher32]

I really feel for your situation. This condition is often overlooked and can be debilitating. I'm concerned that you haven't really been properly diagnosed nor treated, though. Is a torturous colon your one diagnosis? A colon that is longer than normal sometimes isn't too bad of a problem. But if it twists, that can make blockages occur and is very difficult to deal with.

IBS C is not a 'true' diagnosis. It's just an 'overlying' term for someone with an 'irritated bowel.' Doctors throw this out when they have nothing else to offer, as GI issues are often extremely complex and misunderstood. Where have you been for treatment? Given your serious symptoms, I would recommend a visit to either Mayo Clinic (Rochester, MN would be #1) or Cleveland Clinic. It doesn't sound like your current doctors are giving you proper diagnosis. Yes, the stomach, large and small intestine can all be effected and in order to test these things, you need a GI Transit study. Mayo Clinic did this for me.

About 50% of those that have chronic constipation also have pelvic floor dyssyerngia, meaning a tight pelvic floor. This could also be one of your problems, if not the main problem. It is often overlooked by almost all GI doctors. I finally got answers at the Mayo Clinic. An Anorectal Manometry didn't even diagnose my pelvic floor problems, their biofeedback nurses are the ones that spotted the symptoms and I am so grateful they did. This hasn't 'fixed' my problem by any means but at least now I understand it and have ways of coping somewhat.

If you DO have dyssynergia, a colectomy would not be an option. Any doctor that would recommend this without checking your pelvic floor is not to be trusted! I don't think removing a persons colon solves any answers, to be honest. If you were to 'develop' dyssynergia from chronic diarrhea due to the colectomy - then what!? A colostomy or ileostomy is what is needed for those with severe PFD along with colon issues. This is obviously a very last resort and can result in its own severe and life-threatening problems. I think your situation is one where you need to see experts, not regular GI docs or surgeons.

 

[twizz888]

Ok, I just typed a huge reply and then my 3 year old bumped me and it got deleted, so I'll keep this short and to the point. Thank you Annie7 and Dreamcatcher32 for your replies and well wishes.

Dreamcatcher32, I have wanted to go to Mayo since this all started. Through the years I think I've had about every test and medication trial that exist, but have never had a team look at the whole picture. I would love to ask you (a lot of) questions about your experience. I guess the most important question is what the process was for you to get an appointment. Also, the last time I checked with the GI center there they had a 2 year wait list and certain criteria that had to be met to get in. Did you have to wait 2 years? If you are ok with answering more questions, maybe I could send you a private message instead of posting too many personal details on a forum. As I mentioned, this is the first forum I've ever used, so I'm not sure if that's possible or not.

Thank you!