Tam, Thanks for such a quick reply and yes your info was helpful. Getting started on this research was difficult and your info has alerted me to things I need to ask her. I will probably return here after getting more details with a zillion questions. I'm not even sure right now how she's doing after eating - she's just not one of those people to complain about things. I will share this site with her which may help her come up with some helpful things.
any time!?? i wish i had found this site before my surgery.... but it helps being able to talk to be who have gone thru it! to make sure what im going thru is normal... or time to ask my doctor!!!!!
tam
45 years old
Had total colectomy 12/30/2008 for colonic inertia
@ Tam: I haven´t posted in a long, long time(it was probably in "Total Colectomy Part 13 or so...) but I have been reading everything. My story is very long and complicated, maybe you have read it. I also suffer from general dysmotility in all of my digestive system - stomach, small and large intestine. I haven´t had surgery, my family doesn´t think this is the right thing. I am completely fed by a nasal j-tube because of the gastroparesis. So now I was wondering if you think the surgery has helped. I have also had most doctors telling me that a colectomy only helps if JUST the colon is involved and that it can actually make things worse if you also have upper GI problems. What is your experience? I am just so lost...
hi dana, i've followed your story when i read all total colectomy parts. i was wondering what has happened to you since you last posted and i was very sorry to read that now you're still the same, and the drs. haven't offered you any solution yet. i feel very sad for you. how do you manage? do you work/go to school? can you function at all or are you housebound?
i wish you the very best and that some day you'll find relief.Hodaya
Hi, so it sounds like you and i have the similar problems..... i have been seeking help from doctors for about 2 1/2 years... my weight had dropped quickly from 138 ( where i have been for the last 20 years) to 104... where i have been the last year..... i use to go to the bathroom once a month... the stomach problem was probably there, but became more pronounced the last year....... my intestines in the last year would clog... i could see what it was doing.. it was painful.... i had taken zelnorm before it went off the market... and after that went on amitiza and sennokot... he finally had to up that to include a gout medicine for the side effect ( diarrhea) and he wanted me to do citrate everyday - but i did it one day a week... i couldnt do a bottle day.... just so restricting as far as running errands and doing things..... but my intestine did clog and i had to use the citrate to move it... i have had problems with my bladder stopping when that has happened... to date we have not done anything - doctor or testing about that -
now with that said... i am 5 weeks post surgery on tuesday..... i was told i probably had a small bowel motility issue too... that they rarely see a large intestine and gastroparesis and dont find a small bowel problem too... so she said with that i had a little over 50% chance of this helping me.
but i could not take it anymore and took the chance
so far my intestines have not plugged on the left side... they do a little on the right... but from the natural going to the bathroom a lot now that seems to break by itself everytime ( so far)... i am taking reglan for my stomach and so far that is helping some. I have read that your body eventually will stop responding to that. But they have no clue how long a time that is, everyone is different. So far even i thought this surgery was a bear with the bathroom stuff.. the fact that i am going to the bathroom and that it isnt plugging like it use to is a good thing for me so far. I do not know what will be come of the small intestine but i will work with my gastro and colorectal surgeon to stay on top of whatever comes up. She said to give this 6 months, to heal, and to see how it progresses. she said it would continue to get better as the 6 months progress. I do still have the cramps though, in the same area as i did before. which for me signals that it was always the small intestine. But my large stopped working., so it was the best decision for me at the time. i wish i could see into the future and see what it will be like down the road ... i know right now i have to be careful how i budged errands after i eat. sometimes i run to the bathroom 3-4 times.. and i dont get a lot of notice.. but i have problems with that tooo..
so right now i'm glad with it.... we will see where it goes from here! its a challenge the eating and the bathroom .... but really never felt i had a different choice, i wasnt responding to meds anymore
Tam
45 years old
Had total colectomy 12/30/2008 for colonic inertia
@ Hodaya: I am 24 and right now I am actually trying to get my high school graduation because I had to drop out of school when I was 17. But because of my extreme low weight I had to take a break. I don´t have any energy at all but my family doesn´t want me to have surgery. In my earlier postings you may have read that they had actually put me into a closed psych ward where I was forcefed and wasn´t allowed to leave my bed nor have visitors. They all think my problems are psychological and that my digestive system would start to work again if I ate normally and worked on my "mental issues"...
oh, dana, i feel so bad for you, i can't imagine what i would do if everyone around me thought of me like this, i'd feel totally lost.... but don't the tests prove it's physical and NOT mental? i wish you could just go to a different country and have a new beginning with new drs.
Hi, I am having a total Proctocolectomy (removal of entire colon and entire rectum) on March 30. They are going to put in a J pouch. I would greatly appreciate hearing from anyone who has had this problem due to colonic inertia and rectum inertia. I also have a weak pelvic floor so I am worried about the J pouch working. Thanks!
hi marymagdalen, most of us with colonic inertia have a colectomy, but we get to keep the rectum. i'm so sorry to hear you have to have the rectum removed as well. i haven't had surgery yet. about to have it some time soon.
Thank you for responding. I envy you. I have met quite a few people who have had their colons removed but were able to keep their rectums. And this solved their colonic inertia problem. Every one of them is so much happier now. And they don't have all the complications that you have with a J pouch. When is your surgery scheduled? Also, I'm learning a few things from reading these posts like....I need to request that my doctor use "Seprafilm" when he does the surgery, to prevent scarring. Shouldn't he already know to do that? Why do I have to request it? Also, I've heard that you need to drink water or coconut juice with electrolites in them. When should I start, as soon as I get home from surgery? And why isn't my surgeon telling me these things? I have so many questions but I can't seem to get anyone to answer my posts. Thanks for any help you can offer. It is must appreciated :)
mary, you're most welcome!! how come you know so many ppl who had this surgery for colonic inertia? i can't find even 1, except on this board.. but actually meeting them.. that i never had that chance. where did you find them? how long has it been since their surgery? months? years? just curious, cause i've been told by a colorectal surgoen that only about 2 yrs post op you can tell if the results are good or not. till then things can still change.
i don't have a date yet. there are still things to do till my gi reffers me to a surgoen. i hope to have it on August of this year.
about the seprafilm.. surgoens sure know about it and know how to use it. however, i'm still not sure why they don't tell us about it themselves, but i would really like to ask that my surgoen (when i get my refferal to go to him). if you don't ask it, they won't say a word to you about it. it's sad, cause it makes me think again that there are a lot of things that they know and don't tell us about them.
i don't know much about the nutrition part post op, but i'd guess that you should start with that coconut water as soon as you can post op. as for the surgoens.. they don't advice much about nutrition. as far as they're concerned, it's not their job. you can learn a lot about nurition on this board, there's lots of information. also, it would be a good thing to consult with a nutritionist, one that works with natural organic foods, you know.
anyway, maybe you can get more ppl here to notice you if you start your own thread, a new topic. also, on the TOTAL COLECTOMY PART 21 there are more ppl with colonic inertia. but non of them had to have their rectum removed.
BTW.. i have a problematic rectum, so i'm taking in to consideration that i may have to lose it too, but i still pray i don't :'o(
You mentioned that you are on Nerontin. As you know, such meds slow down the bowel. However, my colon/rectal surgeon said that a new drug just came out for that. It is called Relestor (I think that's how it's spelled). He said that it comes in injection form and it's particulaly for people on meds who have constipation. It causes the meds not to constipate you (if that makes sense).
I'm getting my entire colon and rectum removed on March 3oth due to colonic inertia. I am on methadone for another problem. I take 50mg a day. The doctors don't think it contributes to my constipation because I had the constipation long before I was on the methadone.
Thank you so much for your reply. The reason I know people who had this surgery is because I asked my surgoen for names and phone numbers of people. I had been told by the first 2 surgeons that I saw that NO ONE would take out my colon just because I was constipated. I finally was referred to a surgeon who said he has done 4 surgery's for my condition. So I said I'd like to talk to them. I found out that the reason why 2 of them were able to keep their rectums was because they didn't wait 17 years to see a surgeon. Had I gone to see one 10 years ago, my rectum would still have been working and my pelvic floor wouldn't have been so weak. then I could have had my colon taken out and kept my rectum...no J pouch. But no one ever told me about this surgery. I had NO idea that this could be done or I would have done it in a second. Because I've had IBS for 30 years and being chronically constipated means being in pain every day until I have a bowel movement. So I've had no choice but to take laxatives every day for the past 17 years. Then about 6 years ago I had to start using rectal suppostitories in addition to the laxatives. Now, the rectal suppositories no longer work. So even if the laxatives turn the stool to diarrhea, I can't even get THAT out. The reason I'm telling you all this is this....don't wait years to have this done. Also, you said your rectum is working but not that well. Have you considered getting bio feedback to strengthen it before surgery? Some physical therapists specialize in pelvic floor dysfunction. If your rectum works a little, you might talk to a physical therapist and find out if it's possible to get it working better by strengthening your pelvic floor. Has anyone said that your pelvic floor is weak? Mine is very weak and that is why I'm worried about the J pouch working. Even though it seems no one on this site has gotten a J Pouch for this problem, when I've looked into that on the web I've found studies that show it has been done and succesfully. But they don't mention whether the patients had pelvic floor dysfunction or not. The people I have talked to on the phone (that have the same surgoen as me) that were able to keep their rectums are doing great. They are thrilled. They have their lives back and have had no complications what so ever. One is a nurse, the other runs her own business. Both had their colons removed due to colonic inertia about 10 years ago. There are 2 that I have talked to that have J pouches. It's been a rougher road for them. One still has her J pouch and is doing fine, but not great. The other did not have any pelvic floor dyfunction. Her J pouch was working great. Then she went into the hospital to have her ovary removed. The surgoen cut the blood supply to her J pouch, and, as a result she has had to wear an ostomy bag ever since. She hates it. Thank you for talking with me. My surgery is in just a few days and I'm scared. I'm a Christian. I'm trying to hard to keep my faith and expect the best.
thanks so much for all of this information. very intersting too!! 10 years ago???? that's so encouraging to know!!
OMG.. your surgery is just in few days.... oh i wish you the best of luck!!!
well actually, i've been suffering with this condition for 15 yrs now. no one has told me about anything either and i'm so mad at my regular dr that never took me seriously at all. she always said it's all in my head and i don't have anything wrong with me. i'm SO mad at her. i kept telling her that i can't have a bm for about 2 weeks and she kept dismissing me... it's so sad. i'm 35 yrs old now and it all started when i was 20. would you believe it that i didn't even know that there's such a thing as a gastro doc? honestly, i was such a silly girl who knows nothing about nothing and was just keep trying to get help from my stupid regular doc. she screwed my life.. that's how i feel.
anyway.. what's done is done, right? and besides, as you and i both believers, we both know that everything happens for a reason, right? so there's no reason to be angry or frustrated about the past or about anything that happens in life. we SHOULD do our best to acheive our goals and pursue a better life, but even if we don't succeed, so then we DO have to except the bad things too.
i did have biofeedback for 3 months. didn't do any good for me. my prob is not weakness, but just the opposit. i can't relax my muscles. it is called "anismus" if you ever heard about it. anyway, i keep praying my rectum will behave post op, lol.
so.... again, GOOD LUCK to you, dear!!!! please try to think positive thoughts, o.k? i hope everything goes smoothly well, no complications, speedy recovery and that the results are a total success!!!!
please keep me posted.
BTW.. did you have enough time to order the seprafilm?Hodaya
2b ColonFree I did order the Sepra film. Like you I thought, "Why do I have to tell HIM to do this??? Souldn't he be telling me about this stuff?" So glad to hear your a believer. I want to share something with you now that I know that. I became a Christian 18 years ago. Always have gone to non-denominational Christian churches. about 2 years ago I came across some little books called, Volumes. There are 10 in the series. Only 8 have been published. The woman who wrote them goes by the name, "Ann." No one knows her last name or where she lives. She receives no money from the sale of these books. She wants no publicity. The reason is, she's a prophet. She's also a devout Catholic. I have read her books and I can honestly tell you that, next to the bible, nothing has helped me more emtionally or spiritually. The reason is because the words are the words of Jesus Christ. For so many years I had suffered, and never coped well with all of my health problems. After reading those books, and reading what Jesus says about suffering..how to view it, and how to turn it into eternal rewards, I have a peace that I never thought possible. I can finally cope. I no longer feel bitter or abandoned. And I want you to feel that way too. So, if you are interested in reading them, go to the Direction For Our Times web site. You can read them right there for free. Or you can purchase them for $5 a piece. There are also these little booklets called, "Heaven Speaks" that she has put things in she has been told. Read the one entitled, "Heaven Speaks to Those Who Experience Tragedy" if you go to the web site. It's also good to start with Volume 1 if your going to read the Volumes. They build on each other. There is also prophesy about things that are going to happen in the future. I should also mention that Pope John Paul 2 believed that Ann was a true prophet and encouraged others to read her writings. I have a picture of him blessing her books. I do hope that things work out for you. That your rectum will be healthy and strong and that you won't have to get a J pouch. Although, they do sometimes work. Please keep in touch. Gina (It's not Mary Magdalen...how that name got on there is a looong story :)
i'm SO glad you're now able to see things the way you do. it's very important to know how to accept the bad things in life and cope with them, to maintain a good spirit and not to fall into melancholy. to not feel sorry for ourselves, but to be happy and brave inspite of the illness. and know that G-D has his own mysterious ways to help us be better ppl. i can honestly tell you that my sickness only made me a better person. i wouldn't be the person i am today, if it wasn't for my sickness, that i can tell you FOR SURE!!
thanks for the info. actually, i'm jewish, but all of this sounds very interesting, especially if it helps so many and has such a good effect on ppl. i'm so glad it helped you!!
we'll be in touch. you can also check in into TOTAL COLECTOMY PART 21, that's where most of my posts are.
when are you starting the prep for surgery..? yeah, good luck with that too!!!
you'll be in my prayers!!Hodaya
06/05/2007 - STARR procedure
colonic inertia w/ pelvic floor dysfunction
Post Edited (2b ColonFree) : 3/25/2009 1:43:58 AM (GMT-6)
Hi, I don't think I will be able to prep for surgery. I can't get the fecal matter out of me. I told my doctor this and he said, "don't worry about it. I'll take your colon out with it full." He will have no othe choice. I had my hydrogen breath test today to see if my small bowell is working. I've read about people who say tests showed that it worked and then after they got their colons out they found out it didn't work after all. Oh well. The worse that can happen is that I will have to wear a bag. At one time I thought I'd kill myself before I ever did that. But I watch the Discovery channel and I see people with illness's and health problems that are much worse. Oh well.
in a certain way i'd say you're lucky you don't have to go through the prep. some ppl actually say the prep is worse than surgery itself. but i don't think they realize what their saying.
i know what you're saying.. i've also heard about the small bowl stop working after the colon is taken out, and i also keep saying that even if i have to have a bag for life, it's much better than the way i live my life now.Hodaya
Hodaya Last night I went through hell due to that hydrogen breath test. If you ever have it DON'T eat anything for the rest of the day. And have it scheduled first thing in the morning. The reason they did it is because I said I would not drink barium for the small bowel x-ray. That would have NEVER came out of me. They said this would show the same thing. But the stuff they made me drink gave me the most excruciating gas pains I have ever had in my life. And this went on for hours and hours.
I'm getting scared. My test is only a few days away. I must spend some time alone with God for a few hours to renew my faith and reassure myself. I'm nervous.
oh Gina.. you poor thing, i really feel for you. i never had to have the small bowel test. i hope you're better now. you said you're scared cause your test is just a few days away.. well i assume you ment to say suregry, right?
please don't be affraid, you're doing the right thing. however being scared is only normal and human, so can understand. you go ahead and say your prayers to G-D and i as well will say my prayers for you too. i hope you get some peace of mind.
everything will be just fine, just have faith in G-D and in your docs and in yourself that you can do it!
I'm not even sure right now how she's doing after eating - she's just not one of those people to complain about things. I will share this site with her which may help her come up with some helpful things.