Colonic Inertia Questions

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(

hope this helps.

please keep me updated.

2b ColonFree

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.

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 :)

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.

Thanks for all your kindness.

Gina

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.

Gina

Yes, I meant my surgery. I've spent some time in prayer and in reading those books I told you about. It really helped. I will continue to do that. Thank you so much for your prayers. It means a lot to me to know that your taking the time to say a prayer for me. I will email you in this forum when I get home from the hospital. Thank you again for all of your kindness and support.

Gina

Hi,
I'm 20 years old and have suffered most of the symptoms of colonic inertia for most of my life. When i was 11, I remember having to go to the ER because I had such horrible pain that my dad (who's a paramedic) thought my appendix had ruptured. Since that day, the only thing I've ever heard are "Oh, you're just constipated" (YOU THINK??) and I'm sick of it. I've gone through numerous x-rays and tests, and finally went to a gastrointerologist. I was diagnosed with H. pylori, a bacterial infection that lives in the pyloric muscle of your stomach and can cause some of the problems I'd been having (such as vomiting, nausea, etc.) After treatments, I was still having problems, but chose to just ignore them as no one seemed to care enough to go any farther then to say I'm constipated.

Here's what I've done (in order.)
-Miralax (caused horrible abdominal cramping, but didn't increase the frequency)
-Was referred to a gynecologist who thought I may have endometriosis. Underwent a laparoscopy in November of 2008 and nothing was found. He referred me back to a gastro because he was concerned at my abdominal distention and amount of stool he could feel in my abdomen.
-Diet change (lots of water, lots of fiber. I didn't eat badly before, but the change hasn't done much either.)
-I was prescribed Amitiza and Dicyclomine (Again, cramping and pain, no change.)
-Take over the counter Sennakot on top of Amitiza and Dicyclomine... to no avail.
-I have a colonscopy scheduled for April 27th, but I'm not sure exactly what he'd be looking for. I'm too young for a lot of the problems a colonoscopy would be used to diagnose.


I work as a surgical technologist, so I somewhat have the burden of knowledge, and maybe I'm freaking myself out, but I've seen a lot of people come in and have surgery for the same problems I'm having and it really freaks me out. I really trust my gastro, but would it be worth it to mention that maybe colonic inertia might be my problem? I think he's trying to shelter me from putting any names to things so I won't freak out (he knows I'm a worrier) but maybe putting a name to my problems would help.

Does anybody have any advice?

P.s. Coming from a surgery employee, a lot of doctor's use Sepra-Film and other adhesion barriers only if they feel it's needed, not because they feel its needed from the beginning. A lot of people (if you haven't had a prior surgeries) probably don't need sepra-film because the chance of forming adhesions is not as likely as you'd think. Its understandable that you would worry, but I would trust your doctor to do what's best for you whether he tells you everything or not.

Thanks for the quick response!
My symptoms are very simple.
I don't go. Ever.
I can go 2 weeks or more between BM's, and probably longer if I hadn't found ways to control it a little better (eating certain things that don't sit well with me for instance, like caffeine, but even then it'll take a day or 2 to get things moving.) At first my doc thought it could be stress related seeing as how I'm a full-time college student, but I've been dealing with this longer then I can remember. I've tried laxatives and they don't even work. Someone could spike my drink with exlax and be sadly disappointed when nothing happened. I feel like I'm being too dependent on my doctor to find all the answers for me, so thats when I found out about colonic inertia and it all fits.

It freaks me out because I see these people who are having their whole colon removed because it was the only thing they had left to do. Its a little scary to know what this may come down to. The colorectal surgeon I work with the most is fantastic. My fiance has Crohn's and he's done several of his surgeries with no complications. I'm sure these people have similar, great experiences with him.

As a surgical technologist I basically assist the surgeon during the procedure. You know all the instrumentation (and there's a lot!) what they do, and anticipate what they'll need in order to make things flow a little smoother. On TV, when a doctor says "scalpel!" we're the ones that give it to them, just with a little less of a dramatic nature. Its a stressful job, but very fun.

To tell you the truth, I see the people when they come in and when they leave the OR I don't hear much unless I ask. And of course, the first few days after surgery are rough. I would hope that most of the patients are happy with the outcome. If your symptoms are relieved, I would be happy too.

Well, small update:

I was supposed to have my colonoscopy today. So around 6pm last night I start chugging that entire gallon of crap and get done around 10pm. I stayed up til 1 or so and still nothing had happened, so I figure I can go to bed and I'll wake up when I feel the urge. My alarm goes off at 9:30, and I still haven't gone yet. I call my doctor's office and the nurse was totally confused, and told me she'd call me back. When she did, she told me that this isn't something that they're used to having happen, so they're putting me on a clear liquid diet until Friday and rescheduled my scope.

So I drank a load of crap for absolutely no reason.

I'm a little frustrated today.

Hi, I am new to the forum.  I have been diagnosed with colonic inertia.  I have seen the surgeon and he would like to have additional testing.  I already had the sitz marker test and colonoscopy.  Has anyone had a anorectal monometry or defecogram?  They sound horrible and I would prefer not to have them.  I am ready to have a normal life again>

Yeah... 4 days of clear liquids, with dulcolax before bed and magnesium citrate. I'm already dying. I have the tendency to pass out when i don't eat enough so this should be awesome.