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Total Colectomy Part 39

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Posted 2/26/2011 9:05 PM (GMT 0)
I started this new thread to be continued from Total Colectomy Part 38, plus, I can not read the other thread due to the extremely long sentences. UGH, it was driving me crazy.

How is everyone?
Posted 2/27/2011 7:44 AM (GMT 0)
hey Tracy! i'm doing ok, considering. only my rectum is giving me a hard time, cuz he won't let go of the mucous mad how are you tolerating that? are you doing enemas? do they give you enough relief?
Posted 3/1/2011 4:51 PM (GMT 0)
Hi girls

Hodaya i am sorry to hear about all this with you - i dont have an answer to that problem and wish you find something to help with it - it is a nuisance poooping mucus and especially so when you cant expel it - i cant imagine what that is like.

hope there is relief soon for you - hopefully someone can advise on whether more surgery is hte way forward. x

Posted 3/1/2011 8:27 PM (GMT 0)
thanks so much my sweet Karen ♥ i truly don't know what to do about this. it's not as bad as when i was before the stoma, it's much more tolerable, but it does give me a lot of grief. i wish i could have my rectum removed, but removing the rectum sounds like a very scary opporation, the complications the drs say sound really terrifying. i have an appt to a new surgeon next week. will see what he has to say about this.
Posted 3/1/2011 11:48 PM (GMT 0)
Hodaya, my rectum seems okay. I use enemas every 4 to 5 weeks, and even then the mucous is very minimal. I try not use the enemas more often due to rectal bleeding and rectal irritation. I do get the rectal pressure, but if I ignore it, then it usually goes away. Have you tried to ignore the rectal pressure and push back how often you are using the enemas?
Posted 3/2/2011 8:55 AM (GMT 0)
i do try to ignore it, but some days it's just impossible to ignore. i'd say it's about 50% of the time. i do enemas once a month like you, but they don't give me much relief. with my last enema (a week ago), i was feeling the same pressure the next day, as if i didn't do an enema at all. grrrrrrrrrrrrrrrrrrrrrrrr
Posted 3/3/2011 1:07 AM (GMT 0)
Hodaya,
If there is mucous collected there, not only can any GI or surgeon suction it out with a sigmoidoscope, but ANY doc with a glove and KY lubricant get could simply disimpact the stuck mucous. If it is stuck mucous. Remember you do not have your whole colon making mucous just your rectum.

Also the other thing that sometimes happens with me and my whole colon making mucous is that sometimes there feels like there is a ton there and there really is very little. The nerves in the rectum are very sensitive and a little can seem like a lot. My ileo surgeon told me that much of the mucous that the colon and rectum make is then reabsorbed.

I'm not belittling your discomfort, but there may be something to this. I used to have a fit if mucous didn't come out and I still go for suctioning a few times per year, but if I feel the urge do an enema, get out what I can, then just walk away from the situation, the urge always goes away. Our issues are likely quite different, but it may be something to try. At least a try anyway.

Wouldn't you know there'd still be something we'd have to get out of our rectums. Jeeze!

Good luck, Rosemary
Posted 3/3/2011 10:09 AM (GMT 0)
thanks Rosemary. guess i'll just have to live with it.
Posted 7/31/2011 3:11 PM (GMT 0)
Hi Iam considering having a subtotal colectomy. I pass a lot of mucus now and use suppostories and laxatives to go and spent so much time in teh loo. I am hoping that after the op I WON'T be spending loads of time in teh loo but others tell me I will never be able to be far from a toliet?? is this true?? I think I suffer from terrible candida overgrowth and I wonder , if this is teh cause of the colonic inertia or if it is present because I have this problem? Will that go with the bowel?

It is so hard to know what to do. I dont want an operation if there is anything I can do but I am desperate.
Posted 8/10/2011 10:15 AM (GMT 0)
I am frightened now as I can have the op at teh start of sept and i dont know what to do
Posted 8/10/2011 11:18 AM (GMT 0)
Vikster, Are you having surgery in September?
Posted 8/14/2011 5:33 PM (GMT 0)
Hiya All,

I'm new to this board and I'm also 9 days post-op from my total coloectomy. I was very weak, very weak after the procedure. I am just getting enough strength to type this up. I had my procedure done because of severe constipation for years. It just became too much.
I still have no appeptite, have lost 6lbs since coming home from the hospital, and everything, even water runs completely through me.
If anyone has anyone questions about the procedure, I'm willing to answer.
Posted 9/15/2011 9:10 PM (GMT 0)
Hi sorry I didn't reply I was getting no notifications. I am currently reading through and am up to part 16!! lots of reading and wonderful info but most of those people seem to have disappeared now?? Hope that is because they are having fun fun fun :))

My surgery was canceled, I am taking a holiday and am going to ask him more questions and it should be in october.

I have read that some people go every few weeks. I go every day, sometimes ten times a day but I always have to use suppostories and sit there rubbing my stomach and now take laxatives most days...sometimes 3 0r 4 senna can make me go without a suppostory, sometimes nothing shifts. If I didn't use either of these I just don't go but I never let it get so bad as I feel so toxic. I never have hard constipated stools, they are usually mush.

Right now as I am a week away from my holiday I am trying to eat little and juice and soups and have a clearout before I go...this makes me feel rubbish but I dont want to spend a weeks holiday in the toilet!

I have read posts that say people go 20 times a day. I dont want that.

I was diagnose with anismus and had botox injected but after another protogram they said they had cured that but how come I still have to use suppotories, does anyone else.? I'd like to get this retested as I dont want a bag. I keep thinking Iam not as bad as some but I knwo it will get worse. I posted on an M.E / Fibromyagia forum about thus and people posted DO NOT HAVE THIS SURGERY!!! and it has preturbed me...what does everyone else advice...please reply.

Posted 9/16/2011 12:38 AM (GMT 0)
Dear Vikster,

In the experience of many others on this board, Anismus never really does get "cured" at least on any permanent basis, that is why you still need the suppositories. My whole scenario was based on a misdiagnosis of an elongated sigmoid colon that wasn't, surgeons saw in surgery it was not redundant, removed it anyway, did not send it to the lab, fixed other internal prolapses I did not have and did not consent to. all colon, rectum, small bowel all scarred in. Am lucky to be alive due to finding a doc to lyse small bowel adhesions and do a permanent ileostomy bag. Life not easy always, but so far so good and I am counting my blessings so far this arrangement is working.

You need to realize my scenario is by far NOT the norm. As far as saying if you should have your surgery or not, I have no idea what to tell you. My original issue was incomplete rectal emptying (with all guts intact and working fine) took me 2 to 4 hours every a.m. to finish going to the bathroom, but if I could go back to that I would go back in a heart beat. I had no clue of all the misdiagnoses and the "past priors" of my original surgeons or obviously I would not have had any of the surgery.

If you, however know that your diagnosis is correct and your doc is on the up and up, yours is a quality of life issue that only you can decide. My scenario would not happen again in a million years to anyone. Just for interest, check the superior court clerk's office of the city in which your doc works and see if he/she has any medmal suits. It is all public info and anyone can actually get a copy of them. the things I learned too late. I bet your doc has a clean record. But Even good docs can have a suit or maybe 2 in a career. BUT, mine had numerous suits that had I known, I would have steared clear.

If you are sure of your doc and sure of the accuracy of your diagnosis, then it will be safer for you to make the right decision as you will have the right info upon which to base your decision.

Good luck, Rosemary
Posted 4/22/2012 2:01 AM (GMT 0)
Hello everyone,

I'm not sure where I should post, but this seems to be the most recent "Part" of the ostomy conversation. Whether or not you know it, this conversation is so helpful for people who are "browsing".

I'm a 34 yo woman who was diagnosed with an MYH mutation (MAP family, much like FAP) nearly 5 years ago. I was 30 at the time I saw blood in my stool. I immediately went to a GI and was told the polyps were too big to remove, that I would need a colectomy. I live on Long Island, NY and my GP told me to go into NYC for a 2nd opinion. He had just lost his wife to breast cancer and said that she might have been saved if they had gone to Sloan Kettering in NYC sooner. So I did.

The surgeon told me that because I was young and wasn't cancerous, he had a GI who could remove the polyps, he didn't want to perform surgery, which (at the time) sounded excellent. So - cut to the point - five years later (and a genetic diagnosis of MYH mutation), this past August, I went for my annual colonoscopy, and with another 8 polyps, my GI told me that I really needed to look into a colectomy, that sooner than later I would produce a cancerous tumor.

The surgeon I initially saw had passed away, and I met with a new surgeon in December of 2011. He advised that colectomy would be my best option to prevent colon cancer, but let me know it was my choice. He advised me to have another colonoscopy and meet with him again-to let some time pass and let the idea of such a major surgery sink in.

Well, now that I had resolved to have this surgery, my last colonoscopy turned up only 2 polyps, both benign.

I don't know what to do! I meet with my surgeon on Monday, but I'm torn about the surgery. It seems that it is quite a lifestyle change, but if that means eliminating colon cancer, I'm in.

I hate living with this scare over head, but should I have a surgery I could put off another 5, 10, maybe 20 years. Should I get it over with while I'm young; I should bounce back quickly I'm told. Also, I don't have children, but would like to consider getting pregnant in the next year or two.

Any and all responses are welcome. I really don't know what to do.

Thanks,
Brenna
Posted 4/22/2012 3:52 AM (GMT 0)
With my surgical experiences and internally adhesion issues, I would say HOLD OFF! But that is just me the unlucky with surgery. Everyone else seems to do better. Plus I did not have a disease issue, so yours is different and the cancer worry could really be overwhelming I would think. Just my 2 cents. Good luck. Rosemary
Posted 4/22/2012 4:56 AM (GMT 0)

Hi Brenna:

My 2-year-old granddaughter is also named Brenna :-)

You may want to start a new thread here specifically asking for advice regarding surgery with your situation.  You might get more responses, that way. 

I will link some archived threads below which may be helpful.  The majority of them are from ostomates due to Crohn's or UC, but there are some other conditions which resulted in ostomies, as well.

You will hear time and time again that it is a personal choice, and that it so true.  Just do your research, as you are doing, and it will help you make an informed decision.   I kept a document on my desktop and cut and pasted all kinds of info that I wanted to remember including tips for pouching systems, ostomy products and preventing leaks--even months before my surgery.

I had "indefinite for dysplasia" in my colon, so I did opt for surgery.  I didn't want to wait until it turned malignant, and then have to deal with radiation and chemo on top of surgery.  It is a relief to me to not ever have to worry about CR cancer again, and no more colonoscopies was an added plus.  I do understand how you feel though with your last 2 polyps being clean. 

Since you don't have Crohn's, could you be a candidate for a J-pouch?  I know there are several here who can help with that, as well.

Here are the links.  The last one is from another board, and I hope that it is ok to link it here. I remember this man had to make the decision due to a malignancy in his colon.  I think he is preparing for a J-pouch later down the road.  There are others on this other board who have had colon cancer.

https://www.healingwell.com/community/default.aspx?f=33&m=2375787

https://www.healingwell.com/community/default.aspx?f=33&m=2371122

https://www.healingwell.com/community/default.aspx?f=33&m=2238437

https://www.healingwell.com/community/default.aspx?f=33&m=2015240

https://www.healingwell.com/community/default.aspx?f=17&m=2238435

https://www.healingwell.com/community/default.aspx?f=33&m=2023433

https://www.healingwell.com/community/default.aspx?f=33&m=2376605


https://www.ostomy.org/forum/viewtopic.php?f=2&t=21151

Posted 4/24/2012 10:58 PM (GMT 0)
Thanks a lot, Chronie,

Brenna is a great name! When I was younger, i hated that I was often call Brenda or Breanna, but it seems to be gaining some popularity, so I don't get that so much anymore.

I'm going to begin a new thread shortly.

I will not have an ostomy or a Jpouch. My surgeon plans on reconnecting my small intestine to my rectum and says that my rectum will learn to "act" as a colon (as far as absorption is concerned).

I actually scheduled the colectomy for May 31. I have been given the option to wait and hope that annual colonoscopies prevent cancer, but with this high of a risk, and not wanting to live in 12 month intervals, I've decided to get this problemed organ out of my body. I'm so tired of living appointment to appointment.

It was a tough decision to make, especially because I have people close to me (who will support me no matter my decision) ask me to "really" reconsider this. Like I haven't already.

I'm terrified, but I'm trusting my surgeon and that all goes as planned.

Thanks for the links you've sent me; some were really helpful.

Any advice you have for pre- and post-op will be greatly appreciated.

Thanks again,
Brenna
Posted 12/5/2012 5:47 AM (GMT 0)

www.inspire.com/ng1031
31 years old, Female, Married

I have been dealing with "undiagnosed" digestive issues since I was about 25. I have spent a majority of my 20's and now the beginning of my 30's suffering and living a life controlled by chronic constipation and all that comes with it (for up to 2 weeks or longer), nausea, noticeable and uncomfortable bloating (look pregnant/clothes not fitting), painful gas pains and stomach cramping, chest pains and girggling/trapped air in chest (unable to burp), weight gain, and increased stress levels. It has ruined events and vacations, my attendance at work, my self-esteem, and even how much sleep I get at night. I was getting more doctor bills and no answers. cry  

 
After 8 doctors and 14 procedures/tests/xrays, diet changes, physical therapy and trials of medications I have been told I "could have"...
*SIBO
*IBS-C
*Tortuous Colon
*Colonic inertia
*Small/normal sized anterior rectocele

I was diagnosed only with *Weak peristaltic function of the esophagus.

One Colon Rectal Surgeon gave me his opinion as:
I believe that we have established that your colon motility is markedly abnormal based on the results of your Sitz marker study. Evaluation of your small bowel motility was the 24 hr Sitz marker image – yours shows all the markers in you colon by that time, as would be expected with normal small bowel motility. The evaluation that you have had was appropriate and thorough to rule out pelvic floor/neurologic abnormalities that can be the primary source of abnormal colonic transit, such as short segment Hirschsprung’s disease, a large rectocele, or pelvic dyssynergia. Although you have a small rectocele, I agree that this is not the source of your problem. The other tests results (positive rectal anal inhibitory reflex, adequate balloon expulsion test, normal defecography) have essentially ruled out these other causes of constipation.

I was being told that total colectomy surgery was my answer by various doctors but some wanted to give me a temporary colostomy bag to test motility before doing the surgery. This made me weary as I was always under the impression that surgery was to fix things not diagnose things. nono another colon surgeon told me that was not necessary based on my test results (I soon learned later that he was correct when Mayo Clinic agreed with him). I was stressed on the edge of deciding if I should move forward with surgery why doctors kept giving me mixed messages but with no exact answer of a diagnosis. confused At one point one doctor even told me there was NO surgery shocked for my condition and that I just have to live with it. I was hitting dead end after dead end with doctors. Looking for feedback from others suffering with motility disorders I found this site. I kept asking my Mom to send me a sign on what I should do. Pull some strings in heaven for me.

Then I found http://www.inspire.com/groups/agmd-gi-motility/ and got a response from another member who told me about a doctor that could give me the answers I needed and specializes in cases like mine. I listened to what she told me and sent my story to Dr. Camilleri at the Mayo Clinic in MN. He got me in and I have since seen him and have had a full 48 hour slow transit study, an EKG, more blood work and a colonic manometry. Based on my medical records and their findings I FINALLY have answers  smilewinkgrin   My right side of my large intestine is slow and backing up into my small intestine which shows the pacemaker cells on that side are not working. My colon is VERY long, loopy and tortuous. There is still some contraction going on in my colon when given a meal and when given iv medication so I was put on a one month trial of Resolor but my body did not react positively to it. Because of that I will be scheduling my laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic and Dr. Camilleri has now referred me to Dr. Cima who is the colon surgeon he feels is best for my condition. I am a good candidate for a successful surgery because my pelvic floor and rectum muscles are still working and are strong. I am happy to know that everything has been checked out before moving forward with surgery to avoid as many complications as possible. I also learned that IBS and SIBO symptoms I am having are due to the issues with the colon and are not a seperate issue as I have been told by other doctors. So if you are being told you have these be sure you do and it's not a side effect of something more major! Like a dieing colon! skull  

 
I too am looking for feedback on this surgery before I go in to meet the colon surgeon on 12/18. I want to bring as many questions as I can with me.

One fear I do have is the fact that Mayo Clinic is a 7 hour ride. So after I am released from the hospital I will have a 7 hour ride home... how frequent do you think I will have to stop for breaks? I am scared of having to hold it on the ride etc.

Also was anyone on birth control prior to this surgery. I am wondering if mine will be less effective if I am constantly going to the bathroom.

Can anyone tell us how their surgery day went.. like how it started and how you felt and what you went through. I know the doctor will tell me a general idea but would love to hear it from a patient who went through it.

Post Edited (ng1031) : 12/5/2012 3:26:34 PM (GMT-7)

Posted 12/7/2012 1:26 AM (GMT 0)
NG1031,

I had surgery June, 2010 to have a temporary loop ileostomy to allow the rectum some time to rest to see if it would help with the pelvic floor dysfunction. It did not, so in June 2011, I had the entire colon removed and an end ileostomy. This surgery was filled with complications, but after some healing time, I have to say living with the bag is so much better than living with colonic inertia and anismus....If you have any questions, just holler. I been working all week, but will have more time this weekend to respond in depth to whatever questions you may have.
Posted 12/7/2012 1:53 AM (GMT 0)
Thank you. The surgery I am having will not require me to have a bag. They will connect my small intestine to my rectum. I am very happy to hear your surgery was a success (eventually.. sorry you had complications)
Posted 12/9/2012 9:27 PM (GMT 0)
NG - In July 2010 I had a sub total colectomy for chronic and severe constipation. I'm told that I have seven inches of colon left. My surgery was a success in that I no longer suffer from constipation but there are complications that I deal with. If I eat fruits, veggies, nuts or whole grains I will have cramps, gas and diarrhea. But I would much rather deal with this than the constipation I did before surgery.
Posted 12/9/2012 9:36 PM (GMT 0)
So for your surgery you had part of your large intestine removed instead of having all of it removed correctly? For my surgery they are removing all of it. They told me that if the pacemaker cells cause part of it to die off then eventually the rest of the large intestine will do the same. That is why they won't do a portion or resectioning surgery on me at Mayo Clinic. Makes sense to me though.Right now to keep things under control I avoid white flour, as much gluten/wheat as possible and stay under 40 grams of sugar a day. It seems to lesson my stomach aches. I also avoid gas causing foods as much as I can because it gets trapped and I get TERRIBLE cramping. I can definitely adjust to diet if I need to after surgery. I have found I have the will power to do it when it comes to my cramping and colon issues.. just not as good will power when its for dieting to lose weight ha ha ha. Although cutting out the stuff that was making my condition worse I was able to lose 25lbs so that has been the only plus to having to eliminate so much from my diet. I am just curious what I will be able to eat after this surgery that is different from what I am doing now. I know everyone is different. I wonder if there will be things I can't eat now that I can eat after and vice versus. Will be interesting I am sure to find it all out. Trial and error has been something I know very well ha ha
Posted 2/17/2013 6:47 PM (GMT 0)
I had a laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic on January 18th for slow transit constipation. I was suppose to be in the hospital for 1 week and ended up there for 3 weeks. I formed an ileus.. the most pain I have ever felt in my entire life. I was on decompression tubes.. one in my nose/throat to my stomach and the other inserted in my rectum through the small intestine until my body could do things on it’s own. Before the tubes I was vomiting bile. I was on morphine drip and it still was not enough for the pain. It has been aweful. The surgeon told me that it happens to 10% of people and that the type I had was very rare. He also scared me when he said there was no guarantee it would not come back later on.

Now I am home and no more narcotics.. just Tylenol which to me does nothing but I understand that the narcotics are not good on the stomach and will slow down my process.

I am going more frequently (which is great from never going at all or feeling like your being ripped apart when you go) but because I am still on the liquid/soft food diet the bm’s are also liquid. From hearing other people’s stories I am surprised I do not got a million times a day. How much I go is pretty tolerable. I am behind as far as food.. I should be on week 4 introducing foods etc but instead I am only considered a week into things due to the ileus. It was like I had to start all over from the beginning.

Now its a matter of trying to deal with these pains and these cramps whenever my bowls decide to move things along. Do others experience these cramps? They are aweful. The doctors say its the small intestine trying to figure out what to do, moving things along etc. They also told me that if it’s making noises, gurggling and moving that is a good sign that they are still working. It might be a good sign but its painful and keeps me up at night. Before all I had was the noises and the movements but now I feel cramping. The other thing is they get worse when I lay down. So this makes going to sleep or taking a nap to get some energy very hard to do. I get them when I sit and stand up but they seem to be worse when I try to go to bed. and lay down. Because of that I am not getting much rest. I am using the heating pad, taking Tylenol PM at night to try to sleep and Tylenol during the day. None seems to really make it go away.

I also getting a random shooting pain whenever I pass anything that is not liquidy.. like if my bowl has any bit of substance to it I get this shooting pain in my lower right abdomen that shoots up. Anyone experience this? The surgeon says it's because my body is healing. It just makes me nervous as I really am scared of the ileus returning and have heard many horror stories about people having issues after this type of surgery. They told me as long as I am not vomiting again, that I am passing gas/bm and do not have a fever that I am ok.

Any input would be appreciated. The cramping that comes along with the gurggling/movement of the small intestine was so severe and last so long last night I am almost called the ambulance. I was up from 9pm - 5am fighting it and trying to sleep. It was not until 5am that it started to subside. It seems like when I pass gas or bowl (mine is all liquid tho) that is starts to feel better but it doesn't go away. It keeps happening over and over
Posted 3/2/2013 10:25 AM (GMT 0)
Hi Ladies,

I am 22 years old and I live in Australia.

I have been reading though many of yours posts for a while now...


After 7 years of constipation problems, and 2 years of testing, I have been diagnosed with Slow Transit Constipation (colonic inertia).

As most of you have probably experienced, it has taken so long because doctors has mistaken it for various other issues such as IBS when they have told me to increase my fibre intake (making it much worse).

My recent diagnosis with STC has indicated that my colon is double the length/size of a normal one and there are gaps in the nerves along the colon which cause peristalsis. Hence, food does not travel down, it just sits there.

I have been on laxatives for 5 years and it’s a horrible way to live. Over the duration of the 5 years I have gradually had to increase the amount that I take because they stop having any effect after a while.

I have had electrolysis done to try to stimulate the dead nerves, but the procedure had no success.

I have had colonoscopies/endoscopies performed as well as a CT scan of my small intestine, barium enema and a sitz marker test.

I have been so see various doctors in Australia, recently one being a Colorectal Surgeon who performs total colectomies. He informed me that it is unlikely that he would perform any type of surgery on me because I don’t have anything life threatening, such as cancer. He recommended I stay on laxatives for the rest of my life, and just try taking stronger ones.

This is not the way I want to spend the rest of my life, as it impacts my day-to-day living greatly. (I’m sure you all know how it feels)

Doctors in Australia are definitely not as advanced as doctors in other parts of the world.

The reason behind my post is to ask you all for any recommendation of a VERY good doctor who has performed a total colectomy on yourself and you think would be willing to do the surgery for me.

How any of you have had complications/no complications?

I know most of you are living in America, and I am more than willing to travel there to do the surgery because I cannot continue living like this.

I look forward to hearing back from some of you, and I hope you have been blessed with a happier life post-surgery.

Laura x
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