Hello, my name is Tracy and I'm a 33 yr old married mom of 5!!! I have had IBS for over 11 yrs now; Fibro for 10 but dianosed 8 yrs ago; and got my feeding tube in October... I know what a mouthful.. Shocking huh!! Well to make things even more interesting my last appt with my gastro 2 months ago he told me my next step would be an Illeostomy bag... I do understand I should be posting this in the Illeostomy forum and will... but Im am still puzzled with how someone with IBS could need all these devices to live... I lost a total of 80 lbs over about 4 yrs of fighting to keep the weight on and being just misserably sick.. so sick with the stomach and the Fibro pain that I became bed bound too?? I have been locked in this body and bed for over 7 yrs now.. The main question Im posing is, is there anyone else out there with IBS who has either, if not both (not that Im expecting that) devices??? Cuz I am just having a very hard time believing that all this, needing a feeding to to stay alive, AND now the Illeostomy could be caused IBS!! I do understand that IBS is a very serious and terribly awful thing to live with... but coming as close to death as I have and now needing a second device protruding from my body is just unbelieveable!! I feel like Im being misdiagnosed again!!! If there is anyone out there with either I should would love to hear from you.. just to know your out there.. Im not alone.. the doc isnt wrong.. and how do you deal??? Im an complete emotional wreck, not knowing what to do next.. wondering if the Illeostomy is going to make me feel better.. is it worth it... Cuz I sure thought the feeding tube was going to be the answer to all my probs and it has helped some.. but wasnt my miracle I was looking for!!! Thanks sooo much for listening...
Completely Baffled!!
Tracy Mt
Hi Tracy,
Welcome to HealingWell!
I'm shocked to hear of your struggles and my heart goes out to you. I must say, however, I have NEVER heard of anyone with IBS needing a feeding tube or an illeostomy, much less both. I'm sorry but I find it absurd. Have you gotten a second opinion, with another GI doc? I don't know anything about fibro, but I seriously doubt IBS requires any type of ostomy.
Have you been scoped and biopsied to rule out IBD? Having Crohn's or UC would be a legit reason for an illeostomy (barring necessity, of course). Have you been tested for Celiac's? Lots of times people who can't handle gluten are malnourished and that might be able to explain the feeding tube.
I really hope you can get some answers. Please don't be too hasty in your decision for the surgery. Talk to lots of people and to at least 1 other doc and maybe a couple surgeons too.
You will be in my thoughts...
Lil
Co-Moderator for the IBS Forum
Welcome to HealingWell!
I'm shocked to hear of your struggles and my heart goes out to you. I must say, however, I have NEVER heard of anyone with IBS needing a feeding tube or an illeostomy, much less both. I'm sorry but I find it absurd. Have you gotten a second opinion, with another GI doc? I don't know anything about fibro, but I seriously doubt IBS requires any type of ostomy.
Have you been scoped and biopsied to rule out IBD? Having Crohn's or UC would be a legit reason for an illeostomy (barring necessity, of course). Have you been tested for Celiac's? Lots of times people who can't handle gluten are malnourished and that might be able to explain the feeding tube.
I really hope you can get some answers. Please don't be too hasty in your decision for the surgery. Talk to lots of people and to at least 1 other doc and maybe a couple surgeons too.
You will be in my thoughts...
Lil
Co-Moderator for the IBS Forum
Please donate to help HealingWell continue to help us..... www.healingwell.com/donate
As far as I am aware, Fibromyalgia should not be the source of an illeostomy as well. It is inflamation in the muscles, which, although it can cause D and other stomach upset, I've never heard of anyone with it having problems of your nature.
I'm with Lil that you have something else going on there... Crohn's or something. If you have Fibro, then you have an increased chance of getting another auto-immune disease... like Crohn's. I hope you find a better answer for your problem, because "IBS" isn't the answer, nor do I think it's fibro either.
I'm with Lil that you have something else going on there... Crohn's or something. If you have Fibro, then you have an increased chance of getting another auto-immune disease... like Crohn's. I hope you find a better answer for your problem, because "IBS" isn't the answer, nor do I think it's fibro either.
Lil and Keriamon,
I am sooo sorry it has taken me a few days to get back to the forum.. I have been very sick yet again!! Im sure you both can relate with that!! I have lost yet nother 5 pounds in the last 3 days and was in for IV fluids again... But I wanted to say thank you to you both soo very much for both taking the time to respond and for your help!!! You have no idea how much I needed to hear that my feeling that this could no way be being caused by is IBS isnt just my opion... there is others out there with the same opion!!! And it wasnt just me saying it cant be being caused by that just because I didnt want the surgery... The first thing I said when my doc said that the next step was an Illeostomy was "NOOOO!!!!!" and right after that I walked out of the doc's office and refused to make another appt!! I did call him back a month later and asked to be refured to mayo, and he did do that, but I just found out that it will be 6 months before I can get in to them!! So I decided while I waited I would do some more research and see what I could come up with... but I didnt know where to start! Thats when I found this sight!!! And now you have both given me a place to look!! Thank you both again!! As for your questions... I went in for a colonoscopy and they couldnt preform the proceedure because I couldnt get cleaned out!! The meds they gave me to clean me out had me sooo sick!!! You should have seen me!! I looked atleast 7 months pregnant!! My husband and I was soo scared!! We had called the doc and he told me to stop taking the meds.. so in turn I didnt get cleaned out.. and they havent tried it again, basically because they feared the same thing would happen. I have had sooo many other scopes and proceedures done from both ends and they havent been able to come up with much for a conclusion.. The best they could come up with was that my rectoseal I had done during my hysto didnt work and is creating problems getting things to move properly.. and that I have some damage with muscle control and nurve damage in my rectom from a hematoma right after the restoseal. But other than that all they can say is that I have dismotillity problems and labeled it all under IBS!!! So I am getting a second opion!! And I havent ever heard of Celiac's or IBD so Im going to look that up now!! And keep looking until Im absolutely sure about what is happening to me, this time, before I allow them to cut into me again!!! Oh and I have made another appt for 2 weeks from now to inform doc that Im not ready for this surgery, and that I dont feel that we have found my true diagnosis... and until we do I dont want it!!! But I will keep up with the forum.. even though I dont have an ostomy.. cuz part of me still thinks that an ostomy my still bein my future, when my true diagnosis comes out!!
Thanks Again!!!
Tracy Mt
I am sooo sorry it has taken me a few days to get back to the forum.. I have been very sick yet again!! Im sure you both can relate with that!! I have lost yet nother 5 pounds in the last 3 days and was in for IV fluids again... But I wanted to say thank you to you both soo very much for both taking the time to respond and for your help!!! You have no idea how much I needed to hear that my feeling that this could no way be being caused by is IBS isnt just my opion... there is others out there with the same opion!!! And it wasnt just me saying it cant be being caused by that just because I didnt want the surgery... The first thing I said when my doc said that the next step was an Illeostomy was "NOOOO!!!!!" and right after that I walked out of the doc's office and refused to make another appt!! I did call him back a month later and asked to be refured to mayo, and he did do that, but I just found out that it will be 6 months before I can get in to them!! So I decided while I waited I would do some more research and see what I could come up with... but I didnt know where to start! Thats when I found this sight!!! And now you have both given me a place to look!! Thank you both again!! As for your questions... I went in for a colonoscopy and they couldnt preform the proceedure because I couldnt get cleaned out!! The meds they gave me to clean me out had me sooo sick!!! You should have seen me!! I looked atleast 7 months pregnant!! My husband and I was soo scared!! We had called the doc and he told me to stop taking the meds.. so in turn I didnt get cleaned out.. and they havent tried it again, basically because they feared the same thing would happen. I have had sooo many other scopes and proceedures done from both ends and they havent been able to come up with much for a conclusion.. The best they could come up with was that my rectoseal I had done during my hysto didnt work and is creating problems getting things to move properly.. and that I have some damage with muscle control and nurve damage in my rectom from a hematoma right after the restoseal. But other than that all they can say is that I have dismotillity problems and labeled it all under IBS!!! So I am getting a second opion!! And I havent ever heard of Celiac's or IBD so Im going to look that up now!! And keep looking until Im absolutely sure about what is happening to me, this time, before I allow them to cut into me again!!! Oh and I have made another appt for 2 weeks from now to inform doc that Im not ready for this surgery, and that I dont feel that we have found my true diagnosis... and until we do I dont want it!!! But I will keep up with the forum.. even though I dont have an ostomy.. cuz part of me still thinks that an ostomy my still bein my future, when my true diagnosis comes out!!
Thanks Again!!!
Tracy Mt
Tracy,
I am so sorry to hear you were in the hospital these days. I hope you are feeling better.
I am surprised beyond belief that your doc would even suggest an illeostomy given the fact that you have never had a colonoscopy. He doesn't even know what's going on in there. I really do think your next step is a scope... And I think the Mayo Clinic is the perfect place for it. Good for you for taking charge and asking for that referal! Six months is a long time to wait, sorry. Maybe you can call them every day and ask if anyone has canceled, if so, request their spot.
Co-Moderator for the IBS Forum
I am so sorry to hear you were in the hospital these days. I hope you are feeling better.
I am surprised beyond belief that your doc would even suggest an illeostomy given the fact that you have never had a colonoscopy. He doesn't even know what's going on in there. I really do think your next step is a scope... And I think the Mayo Clinic is the perfect place for it. Good for you for taking charge and asking for that referal! Six months is a long time to wait, sorry. Maybe you can call them every day and ask if anyone has canceled, if so, request their spot.
Co-Moderator for the IBS Forum
Please donate to help HealingWell continue to help us..... www.healingwell.com/donate
Good grief, you have been thru so much. What meds are you on for this? Have you been put on Reglan or something to increase motility. Have you had the barium enema done since they can't do the colonscopy. What meds did they give you to coloscopy ,there are many choices. It does sound as if you should go to Mayo. I would get inline now and hope that something will be sooner. Maybe if you could get all your records there and really push for appt. I am sure they must have some opening for more serious cases which yours definetly is. This is really a more serious condition than most of us deal with but at least you are getting some feedback.
Lil and Canyonbabe,
I am the list and doc is suppose to be sending the records, but since I live 2 states away and have 5 kids I cant just run in if there is a cancelation. I dont remember the name of the meds they gave me to clean me out, that was 6 yrs ago... it was a gallon jug, with meds in it.. and we had to add water to fill up the jug... I was suppose to drink the whole gallon, but only got 3/4 of it done and then swelled up!!! I have had 3 or so Berium Enamas.. and the doc found a loop just before the rectom... but my doc now doesnt believe it was found!! (caused by the hysto.. my old doc said that tends to happen alot when the uterus is removed... the intestines tend to fall in its place and then scar tissue wraps around it and adhears it in the wronge place!) As for my meds, right now Im on.... Miralax, trying me on an antibiotic for the intestines called Xifaxfin @ 400 3 times a day, and injection for stomac cramping and diarhea call Octreatide @ 1 ml injections everytime I eat!! I was on Zelnorm.. and that helped, but has been taken off the market.. and that is why Im in so much trouble right now!! I was on Reglan too... but caused sooo much cramping I couldnt take the pain.. and thats when they put me on the injections!!
Sorry I have to end right now.. my kids wants to go start the fireworks... so I will be back here in a hr or two to finish my post!! Thanks all for all the help and most of all for caring!!
Tracy Mt
I am the list and doc is suppose to be sending the records, but since I live 2 states away and have 5 kids I cant just run in if there is a cancelation. I dont remember the name of the meds they gave me to clean me out, that was 6 yrs ago... it was a gallon jug, with meds in it.. and we had to add water to fill up the jug... I was suppose to drink the whole gallon, but only got 3/4 of it done and then swelled up!!! I have had 3 or so Berium Enamas.. and the doc found a loop just before the rectom... but my doc now doesnt believe it was found!! (caused by the hysto.. my old doc said that tends to happen alot when the uterus is removed... the intestines tend to fall in its place and then scar tissue wraps around it and adhears it in the wronge place!) As for my meds, right now Im on.... Miralax, trying me on an antibiotic for the intestines called Xifaxfin @ 400 3 times a day, and injection for stomac cramping and diarhea call Octreatide @ 1 ml injections everytime I eat!! I was on Zelnorm.. and that helped, but has been taken off the market.. and that is why Im in so much trouble right now!! I was on Reglan too... but caused sooo much cramping I couldnt take the pain.. and thats when they put me on the injections!!
Sorry I have to end right now.. my kids wants to go start the fireworks... so I will be back here in a hr or two to finish my post!! Thanks all for all the help and most of all for caring!!
Tracy Mt
Hey Im back!! I did want to add that the place doc wants to send me to, at mayo, is the motility section... Basically what he is saying is that I have a "Slow Gut"... or poor motiltly in the large intestine... I am wondering what kind of tests are done in the motlity section of mayo... wondering if I will get the colonoscopy in that section or not... has anyone been to that section of mayo??? Well have to get some rest... Thanks so much for all your help!!!!!
Tracy Mt
Tracy Mt
I'm so sorry to hear about the trials you've been going through. Ugh. Mayo's a good place overall - I went there two years ago because I was having diarrhea 25 times a day. They did an EGD, colonoscopy, massive amounts of blood work, and an abdominal CT. They found some weird abnormalities in these tests but nothing definitive, so they told me to take tincture of opium and hope for the best. However, they were extremely efficient and hey, I'm still here two years later and doing better, so they certainly didn't cause any more harm! It was a two- or three-month long wait for me. Did you get your doctor to fax a referral to them? Sounds like it...do you have any other docs who could do another referral?
Co-moderator - IBS Forum
Co-moderator - IBS Forum
I thought all GI doctors could give a motility test. I didn't think it was unsual to be tested at your own Doctor. I think I would "google" motility testing and see what you can come up with. I see Cedars-Sinai has a complete dept for this problem. I have taken a drug called Motilium which is not available in the US but available over the counter in most countries and has been for years. It really helped with digestion. I don't need it any longer. There are no side effects and actually they give it to new moms to increase milk production but in greater quantity. It is dirt cheap. My Dr. knew about it and had no problem with me using it. A lot cheaper than the US drugs. Of course I would not recommend it to you unless you checked it out with Dr.
Sorry it has taken me a couple days to get back to you all again... went on a short weekend trip to Denver so my hubby could see a Colorado Rockies Game!!! Me, of course I stayed in the hotel and watched movies... Then I slept for 58 hrs once we got home... Does anyone else do that everytime you have to exert energy???
Well as for the motility tests... I have done a ton of them!!! Some with my doc here and some in mayo 6 yrs ago.. and some in Or, when I couldnt get all the tests done I needed in mayo.. I ran out of time.. could only get a sitter for a few days.. But I have drank barium, done the enimas, swalled a pill with little rings in it to see where they would end up 5 days later.. but I messed that test up, by miss calculating the day I was suppose to have the exray done on... I have eaten eggs with radiation in them.. to see how long it takes for them to go threw the system.. I did an evacuation test, where they put barium in my rectom only.. and had me hold it in...act like I was going to push it out, without doing so.. and then findally pushing it out.. and that was the test they used to see that my recto seal wasnt working correctly.. and the worst one was where they put a probe of some sort in my rectom and had me "hold it" and then "relax".. and that is the test they used to figure out I was missing some muscle control and nerve damage in the rectom... oh and of course lots of plain ol exrays of the intestines and catscans!!! So I do believe I do have a slow gut.. but then again why does it over act at times out of no where!! I cant find a cause for why it it over acts!! I can also eat something and within 30 secs I can bloat so much that I will gain 4 inches in my waste!! My mom and I clocked and messured it!! I just feel that we are treating both over active and underactive at the same time!! I still hope they get to looking for IBD and ulcers... not just to reconferm that my tummy doesnt want to work at a "normal" speed!! Otherwise I feel the trip with be all for nothing!!!
I was wondering about cedar ciani(spelling?)!!! I wonder how hard it would be to get into them!!! I dont have another doc that would refer me right now!! I live in a very small town.. and it takes me over 2 hrs to just make it to the one GI I do have!! They are hard to find around my neck of the woods!!! I hate small towns.. I keep thinking that the small towns get the docs that barely passed med school in some crappy school no one has heard of!! That is why I am sooo ready to go to a real doc!! One who made the grades in a school people have heard of!!! LOL
Thanks so much for your help!! AGAIN!! I am going to look up some of these tests you all are talking about.. and see if they are the ones I have had done!! (as you may be able to tell my memory isnt very good anymore!!)
Tracy Mt
Tracy, it definitely might seem that way, that the small-town docs are burned-out or otherwise bumbly doctors and I'm sure that's true in some cases. In other cases, you get the really rarin'-to-go docs who have grown up in small towns themselves and so want to give back to those communities, or you get docs who manage to salvage some of the debt they accumulated for med schools because the area is an underserved population and they get tuition repayment from their practice. And there really aren't any "crappy" med schools because the competition is fierce for all of them and they make you work your arse off the same amount!
But I do think it's important for people in a small town need more help when it comes to their health and going to a place like a major academic medical center is obviously the right thing to do. At least in those centers there is active research occurring on a daily basis and the docs have a lot of support from colleagues around them to figure out the more bizarre-o problems.
If you've been found to have motility problems, this could very well be affecting your guts on an intermittent basis. Sometimes the body works in mysterious ways. There are so many constant fluctuations (in diet, activity level, emotional response) at work. Have you tried keeping meticulous food and symptom journals to see if you can find any pattern to your "worse" days compared to your "better" ones?
One thing I think you need to re-visit is the reason for your octreotide treatment. Did they ever say anything about having a carcinoid tumor? I ask because octreotide is a standard treatment for that. It's a weird tumor, and pretty rare, but it can cause a lot of problems.
Co-moderator - IBS Forum
Sarita,
You are very right about the docs... I think it would greatly help to have colleagues to bounce things off of!!! I guess I just needed to vent... I have just seem to have had great results from the docs at Denver Children's Hospital... after having to wait for, what seemed like, forever with the docs here when one of my twins was very sick as a newborn... And Im sure if I lived in Denver I probably would have had to do the waiting game there too, with the prob my daughter had. It just felt like as soon as we finally made it to Denver Children's we finally got our miracle!! And I guess I feel that is what Im looking for now!! And Im finally getting to the end of the waiting game with me.. ( doing all the tests to rule out things) so I pray I am getting close to my "miracle".
As for the Octreotide... my doc said they have been having good results with giving it to people with extreme Diareha. And I have been having extreme cramping and pain!!! And when I do take the shot it either slows the cramping down or stops it... it may not stop the Diareha but it does make the pain bareble!! The pain I tend to get when having a BM gets so bad, that more than not I will pass out from the pain!! Generally the second Im done.. There has been too many times my hubby has had to pick me up off the bathroom floor and or carry me back to bed, cuz I just dont have the strength to make it back... But I am also so very weak.. So it doesnt take much to wear me out!!! Im just so ready to have my life back!!
I have looked up the carcinoid tumor... and I looked at the tests they use.. and I have done almost all of them.. Oh and I have been scoped down the throat too!!! I just havent done the pill with the camera yet... and am calling the doc tomarrow to scedule another colonoscopy.. and hopefully we will finally get this one to work!!
Im sorry I have been sounding so... poor me!!! I just needed to vent, and know Im not alone!!! My hubby is trying so very hard to understand... but is so burdened by all my prop with my illnesses, and being both mom and dad.. And he tends to deal with it all alot better by not talking about it!! And making a decision like an Illeostomy... well I tend to have to talk my way threw to a decision like that!!! And I just dont want to make things any rougher around here than they already are!!! We just had such high hopes in the feeding tube, and was let down by it. It did save my life!!!! But hasnt given it back to me... if you get what I mean!!!
Thank you ALL!!! SOOO very much!!!
Tracy Mt
You are very right about the docs... I think it would greatly help to have colleagues to bounce things off of!!! I guess I just needed to vent... I have just seem to have had great results from the docs at Denver Children's Hospital... after having to wait for, what seemed like, forever with the docs here when one of my twins was very sick as a newborn... And Im sure if I lived in Denver I probably would have had to do the waiting game there too, with the prob my daughter had. It just felt like as soon as we finally made it to Denver Children's we finally got our miracle!! And I guess I feel that is what Im looking for now!! And Im finally getting to the end of the waiting game with me.. ( doing all the tests to rule out things) so I pray I am getting close to my "miracle".
As for the Octreotide... my doc said they have been having good results with giving it to people with extreme Diareha. And I have been having extreme cramping and pain!!! And when I do take the shot it either slows the cramping down or stops it... it may not stop the Diareha but it does make the pain bareble!! The pain I tend to get when having a BM gets so bad, that more than not I will pass out from the pain!! Generally the second Im done.. There has been too many times my hubby has had to pick me up off the bathroom floor and or carry me back to bed, cuz I just dont have the strength to make it back... But I am also so very weak.. So it doesnt take much to wear me out!!! Im just so ready to have my life back!!
I have looked up the carcinoid tumor... and I looked at the tests they use.. and I have done almost all of them.. Oh and I have been scoped down the throat too!!! I just havent done the pill with the camera yet... and am calling the doc tomarrow to scedule another colonoscopy.. and hopefully we will finally get this one to work!!
Im sorry I have been sounding so... poor me!!! I just needed to vent, and know Im not alone!!! My hubby is trying so very hard to understand... but is so burdened by all my prop with my illnesses, and being both mom and dad.. And he tends to deal with it all alot better by not talking about it!! And making a decision like an Illeostomy... well I tend to have to talk my way threw to a decision like that!!! And I just dont want to make things any rougher around here than they already are!!! We just had such high hopes in the feeding tube, and was let down by it. It did save my life!!!! But hasnt given it back to me... if you get what I mean!!!
Thank you ALL!!! SOOO very much!!!
Tracy Mt
Hello to all!!! I thought I would leave a small post here.. and to let you all know I am going to start a new string!!! I did go to the doc... and I did get my dx!! But I was right!! He is lumping everything under IBS!!!! But there is more going on that what I thought IBS was!!! Please head to the beginning of the topic board and read what all happened!!!
Thanks Again Everyone for being SSSSOOOOO Wonderful!!!
Tracy Mt
Thanks Again Everyone for being SSSSOOOOO Wonderful!!!
Tracy Mt