Total colectomy with ileorectal anastomsis

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fit4ever
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Date Joined Aug 2010
Total Posts : 18
   Posted 10/10/2010 1:18 AM (GMT -6)   
I'm a new member although I've been following this thread since January '10. I've suffered from constipation since I was about 18, I'm now 52. In 2007 my sigmoid colon perforated, my small intestine got stuck to the perforation sealing it off but also causing a perforation in the small intestine. I was admitted to the hospital and after 1 week with an NG tube and no improvement they decided to do exploratory surgery. They found a malignant tumor next to the colon perforation and extensive damage to both the large and small bowel. I had to endure a temporary colostomy for 13 weeks while everything healed and to prevent infection. (I give a lot of credit to those of you with ostomies, I just didn't handle it well on any level and was counting the hours until I would be rid of it.) A resection of my small intestine was done they took out 10" of damaged intestine and a 18" of sigmoid colon. After the colostomy take down surgery I figured my constipation problem would be solved. Boy, was I wrong! Within months my colon was almost non-functional. It progressed to the point that I have had to resort to multiple daily enemas requiring HOURS of my time just to have a bowel movement. This is like another job, at this point I spend 20-30 hours a week using enemas just so I can function, try to feel somewhat normal and be able to work.

I went to Mayo Scottsdale last January to meet with a colo-rectal surgeon as I suspected I had colonic inertia. I was diagnosed with pelvic floor dysfunction and told "You don't need surgery, all you need is physical therapy and biofeedback!". After physical therapy and biofeedback the constipation kept worsening even though I had made progress with the therapy. I contacted the surgeon I had met with and she told me all she had to offer me surgically was a permanent colostomy. I had already told her that I didn't consider that an option for me. After more months of suffering I recently saw a GI motility specialist at Stanford Hospital in California. I have now been diagnosed with colonic inertia, a small rectocele and there are still issues with PFD and scar tissue. A total colectomy with ileorectal anastomosis seems to be the only solution. The nerves in my colon don't function at all. Excessive scar tissue has my colon pulled to my left abdomen and it's looped and twisted up.

I would love to hear from others who have had this procedure and all the details of recovery recovery time, life after this procedure, etc. Any and all information would be greatly appreciated. Basically, I can choose to do this surgery or keep living (only existing) as I have been which is exhausting mentally and physically and very stressful. I'm scared to undergo more surgery as I tend to form a lot of adhesions and my doctor said surgery "won't be pretty" - because of the scar tissue it will be long and difficult. Because of the PFD the surgeon may want to do a temporary ileosotomy while I undergo more biofeedback to resolve the PFD. Apparently, the outcome is supposed to better in this situation. Have any of you had this type of colectomy with unresolved PFD? I really don't want an ileostomy and two surgeries. I'm meeting with the surgeon on October 28 and will have a decision to make soon. I've pretty much decided to have the surgery but I'm scared.

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 10/10/2010 11:20 AM (GMT -6)   
Hi fit4ever, I am so sorry your situation is so complicated! I will pray that the doctors can find the best solution for you and soon! I live in San Diego and mostly see doctors at Scripps Hospital but I have been to Stanford Hospital also. All I can do is tell you of my experience. I started having severe constipation at age 20 (I am now 58). For years and years I went thru every type of test and therapy until finally 2 doctors in Northern California said, "We think maybe getting rid of your extra long, twisted colon will get rid of the "pain after eating" problem. I mean, I didn't used to just have a little pain . . . . it went on for days and days and was horrible. Well, in April 2009 I had a subtotal colectomy with ileo-sigmoid anastamosis (2 " of colon left). Now for the past yr. and and half I have had chronic diarrhea (8-15 times a day). It's great knowing if I eat, everything will go thru pretty smoothly. The bad thing is; having diarrha all of the time (most of the time) means I take meds around the clock trying to control it and I get extremlely sore (internal and external hemrhroids!). So now, I have a different kind of pain. I guess I am still better off though, I never have days and days of stomach pain anymore! I have lost over 30 pounds though and it seems impossible to put on any weight. I know my situation is different from yours but maybe some of this info. will be helpful to you in making your decision. anymore questions, just ask!

Good Luck to You!
Gilda

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 10/10/2010 2:24 PM (GMT -6)   
Hi Gilda,

Thanks for the reply. I'm scared about ending up with chronic diarrhea, in essence trading one problem for the opposite one. I also get pain, I've had 11 episode of obstructin from adhesions in the past 2 years. Mostly I get very bloated, to the point I look pregnant. It leaves me unable to eat or even drink water at times. Once I "clean out" with the enemas all my symptoms go away and I feel fine until about 12-15 hours later and I start getting blocked and bloated up again. When I had the subtotal colectomy in 2007 they said I had redundant colon and removed the excess colon as well as what they had to remove because of the perforation and cancer.

I'm sorry that you ended up with the chronic diarrhea. Do you use Immodium for the diarrhea? Are you able to leave your house much or work? I've been told it takes about a year for the small intestine to adapt to absorbing more water so the stool consistency thickens and frequency lessens. I know everyone and their response is different. Do you have any dietary restrictions or foods that are intolerable? After reading some of the other posts I'm a little concerned about that. It seems the foods people aren't eating right away are staples of my diet - protein (meat, poultry, fish, & whey protein powder), vegetables, salads, nuts, seeds, and fruit. After the subtotal colectomy I could eat whatever I wanted too, all the above mentioned foods and never had any problems digesting them. I do use hydrochloric acid with pepsin, digestive enzymes, and pancreatic enzymes and I know that makes a big difference. I am wondering if I could juice my fruit and vegetables initially or puree them? Has anyone tried that?

Have you tried Hemorr-Ice for the hemorrhoids? It uses cryotherapy (cold therapy), very effective. You can find it on Amazon.com.

When one is struggling with these problems on a daily basis, getting the brush off from doctors or misdiagnosed, and feeling like you're the only one dealing with this it was great to find this forum for information, support, and knowing you're not alone.

Thank you!

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 10/12/2010 8:43 AM (GMT -6)   
Hi fit4ever
 
I had a quick scurry through your post and you have been through a lot which is an understatement.
 
I also had a bowel resection - which in turn made my colon 100% inert!  that ws because of a twist in the lower sigmoid. When i actually got to see 'the right' professor who specialised in colonic inertia he said if you do a resection of a small part of a sick and slow bowel then it will exacerbate the condition - hence - you must take it ALL OUT!
 
In my experience i felt my best with an ileostomy - I didnt mind it at all - for 18 months i was living my life.  I am now experiencing life with the reversal - and i have been...constipated! nothing that prune juice doesnt fix though.  also i have been told it is too early to worry about things...and if the worse comes to the worse ... in six months i can have the ileo back again.
 
Seriously anything is better than having a bowel that does that to you - sorry you have adhesions but i hope you will be okay. let us know xx
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 10/12/2010 3:33 PM (GMT -6)   
Hi Karen,

How is your recovery going so far? Did you have laproscopy or open surgery? I will be traveling from Colorado to California to have surgery, so I'm trying to get an idea of how long I'll have to stay there.

My doctor said I may have diarrhea up to 20 times a day initially, but I've read several posts from people that seem to get constipated again, or lean toward that more than excessive bowel movements. Do you find a link between your constipation and specific foods? What types of foods are you eating so far?

I've been doing a lot of research for quite some time, basically I had to make my own diagnosis then find a doctor who would do the tests to confirm it. The studies I've found regarding total colectomy with ileorectal anastomosis for colonic inertia seem to show after years of follow up that the CI patients seem to have less BM's per day than patients who have the procedure for UC, Crohns, and malignancy. Also, those who have slow transit through the stomach and small intestine seem more prone to constipation again. They did check transit through my whole GI tract, and only my colon seems to be affected. Was your transit through the whole GI tract tested?

I've learned a lot from my research, but it's nice to hear from of people who have actually experienced this first hand.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 10/12/2010 6:29 PM (GMT -6)   
  OMG and welcome, I feel so bad for you what a ordeal to go through, your lucky to be alive with a perferation of the intestines it can cause all kinds of infections and death.  So now that you have cheated death.
 
I too was told that I had PFD, and that I need the bio feed back and all that other crap, and I look into it but had no faith becuause there was not good enough results I thought for me to even try that.  Plus I believed that all my out let issue was due to all the pain and pressure of being constipated and bloated all the time.  So I let them do the Sitz Marker Test and the rectal pressure test...up at OSHU in Portland Or.  So told them no thanks that I dont think the bio feed back would help me.
 
So I called a general surgeon in my home town with a great rep...I had been to the hospital ER 3 times that month for them to help me and they said oh just go home and things will happen, after they had me drink a whole bottle of Mirilax, Citrus of Mag, then a Gallong of golightly....and nothing came out.  Then they had the nerve to tell me I had laxative abuse, I had not gone a bm in 3 weeks...So by the time I got in to my surgon its was a few days later.  I told him I don't care what he does to me but fix the problem or I am going to stab myself in my intestines so they have to operate...NOT KIDDING ONE BIT... the doc listened to everything I had to say and how I had been suffering for years, and had lost 115 lbs from starving myself because it was easier than suffering when I ate.  So he did one test the Sitz marker and had me come back in on a Monday, he said your so right your colon is not working at all and that Friday which it had been over 30 days since a bm, he did my surgery.
 
The funny part of it was when I woke up in recovery I could already tell I was going to be better I did not have that sick feeling any more.  So I knew that I would be better, I have had a few bumps in the road but most do, but today I feel pretty good, except I had diahreea last night every 15 min. and still have it.  So its a stay at home day...
 
I really feel for you but you need to do what is best for you.  I am reconnected ..my small intestine to my rectum well the inch or so that was left.  But you know I told my doc when I first saw him that I did not care if I ended up with a appliance or not, I just wanted to live again and feel better.
 
So if you want to aske me anything just hollar...
 
Leslie

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 10/12/2010 8:11 PM (GMT -6)   
Hi Leslie,

Even with all I've had to deal with since my surgery I do consider myself lucky. If I hadn't had the perforation I probably wouldn't have known I had the cancer until it was to late, as I didn't have any symptoms other than bloating and cramping at night. It always occurred after I took my "cocktail" of magnesium and herbal laxatives, the laxatives cause the same side effects so I had no clue. I do feel I cheated death because they didn't do surgery until 9 days after I first started feeling bad and 7 days after I was having horrible cramps and pain, and bloating up really badly. I was real lucky my small intestine got stuck to the perforation. My tumor was the size of a golf ball but it hadn't spread at all and was just into the muscular wall of the colon (stage 2B). All lymph node were clear so I didn't need chemo or radiation. My grandmother died of colon cancer that metastasized to the liver, so they figured there is some genetic component because I was only 49 when diagnosed. I think someone was looking out for me!

I have experienced improvement with the biofeedback but when the nerves of your colon don't work biofeedback won't solve the problem. I just can't understand why so many doctors just give people like us the brush off, it's almost like they don't want to be bothered. It seems like there is a lot of out there suffering. I too have had not response at all when when I take mag/citrate, Go-Lytely, etc. I just get real bloated and nauseous but nothing will come out. I have3 to resort to enemas to get the job done. I also just had the Sitz marker test done, it was not fun! I got so backed up and bloated I could barely eat for a week.

Since you hadn't had a BM in 30 days did they make you clean out prior to surgery? If so, what did you use. Did they give you a temporary ileostomy or hook everything up right then?
I had to have the temporary colostomy to let everything heal and to reduce the risk of anastomosis leak. Having the appliance was very difficult for me, it seemed like it made my life very restrictive, I was afraid to leave the house in case there was a leak or some accident. I'm also very active (I'm a personal trainer and nutrition consultant) and it just made everything difficult. The placement of the stoma wasn't ideal, right under the waistband of my pants. It didn't work real well with my clothes. I hate the situation I'm in but I think I would prefer that over having an appliance. In either case my bowels run my life and everything revolves around pooping or not.

Thanks,

Lesley

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 10/13/2010 4:21 AM (GMT -6)   
Hi Fitforever
 
Yeah I also did lots of research too but it is so good to know of others going through similar ordeals - it makes you feel less alone.
 
I had an open surgery back in March 2009 - my reversal was 23 sept just gone.  Yes it is true people with history of colonic inertia may still lean towards being constipated compared with people with other diseases...but things are changing for me daily - only just over a week ago i was crying in despair... but you got to give your body a chance.
 
It took a couple of weeks before i was eating properly and I started eating anything i wanted at the weekend just gone - i dont see the point of restricting foods - i wasnt told not to.  I know my bowel was very slow waking up and i still have a way to go.  but i figure i eat what agreed with me when i had the bag.  I am eating low residue diet i suppose. So white bread, vegetable soups, cooked veg, a little salad foods etc i dont eat fruit as again it bloats me - weird i know.  so i try to get my nutrients from cooked veg. 
 
Fibre - even with the bag - never really agreed - i would get bloated - that is all - and i HATE that feeling.. So, i dont think certain foods are constipating per se - you have to find what works for you - but i know raw foods can be a strain on a weak digestive system.
 
However, if you have a history of adhesions in the bowel then i know for a fact you need to be careful judging by past members' stories. 
 
The bonus is i have no gas now - but i did A LOT with the bag - how strange.  I suspect the extra bit of bowel absorbs it?  I never do well eat a lot in one go.
 
I am still having probs with tummy ache since the reversal.
 
No i never had my small bowel tested for some reason. 
 
Leslie
 
You go girl !! tongue you certainly told them - i understand about drs just not being bothered etc and not listening - i really understand about wanting to get the intestine out yourself!! What is wrong with these people? 
 
It took four hospitals and 10 years to eventually find out what was wrong with me! I never heard of slow transit consitpation until 2006 when i was first diagnosed and then he said i was too young (what? to have a life?) for a colectomy.
 
Then that idiot referred me to a Professor who specialised in it and the rest is history.
 
Hope you are doing well today.
 
Karen x
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Loop Ileostomy
23 Sept 2010: Ileostomy reversal

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 10/13/2010 1:49 PM (GMT -6)   
fit4ever
Yes it was lucky that they found the tumor.  Did you know that your not supposta take mag citrate every day its not good for you.  Your colon is not working if nothing is coming out.  You need to find a doc that will help you.  No never had a appliance they hooked me right back up and I was so happy with that.  Years ago they did a colon resection cuz of diverticilitus, so things just got worse from there.
 
I am so sorry that your having problems...one doc told me this is just the way my body was and I would have to live with it.  I was also doing enemas every other day for 2 years which in turn made everything worse till they did not work any more.  Not the crud I had to drink nothing.  No I did not have to do any prep for the surgery because he knew that it would do me no good, so I had alot of stuff in my colon and he said its not a prob because he would just take the whole colon and all that was in it out.  I was told that mine was so bad that the cells were actually breaking down and would have perferated in no time at all.
 
Sending prayers your way
 
Leslie

Snoopy708
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/28/2011 12:26 AM (GMT -6)   
Hi All, I am now 36. When I was 15 I had a subtotal colectomy, due to a family history of familial polyposis, basically the colon cancer gene. So I now have about 9.5 inches of colon. When I went in at 15 the doctor said my colon was "carpeted" with polyps, rough estimate, over 600. I am thankful that this surgery was available, much better than the bag. As for the "chronic" diarrhea, I would not say that I have that. I go probably 15 times a day, having loose stools. But after 21 years, I honestly cannot remember what a regular poop is like! wink Also, as was pointed out before, things move through you much quicker, which has many benefits; weight gain is harder and you (or at least I) recover from sickness much quicker as things, including bad bugs, move through me much faster. So having this is not a bad thing at all. I really am happy I had it, for one if I had not, I would have been dead by 25 like my mother. So anyone going through this, the best thing to do is look at the advantages, for one, after the surgery you will automatically loose a few inches off of your waist. And on the even lighter side you can tell people that you are honestly not as full of sh&* as they are! Keep positive fellow colon problem friends!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/28/2011 12:46 AM (GMT -6)   
Hi Fit4ever,

As your post was awhile back I hope whatever you did worked. I am the queen of adhesions. LONG story short I had trouble with rectal emtpying, but no transit issues. I was misdiagnosed with sigmoidocele, docs saw in surgery I did not have redundant sigmoid, these guys not typical docs, so they remove it anyway, do it wrong, then fix other internal prolapses I did not even have, then never send my sigmoid colon to the lab but instead send a loop of small intestine to the lab that I guess they took out and did not put in the op report. No f/u to complications, colon scars in to diameter the size of a pencil, they do nothing. SMall intestine scars shut. I can't eat for 13 months without reobstructing. Puborectalis muscle which controls angulation of rectum scars and no longer lets my rectum straighten to defecation as it could prior to all this unneeded surgery. (YES am suing), but point is, all that could be done to save me is extensive lysis of adhesions off of small bowel and permanent ileostomy. AND I was lucky to find someone with the knowledge,skill, and willingness to do this for me or I would be long dead by now. AM traveling the world and ballroom dancing in between helping my atty's with material for my case.

That all being said, the Mayo CLinic also wanted me to do the pelvic floor rehab but they did not realize it was scarred in place and not just non-relaxing. So that was my story. My pelvic floor is scarred like stone. I am lucky I can pee, but do have issues with that, but at least no bag.

Good luck with whatever you do or did. So many docs do not think of scar tissue. It can kill.

Best of luck, Rosemary

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 1/28/2011 5:48 PM (GMT -6)   
Hi Rosemary,

I'm so sorry to hear about your botched surgery. Good luck with the lawsuit, you deserve all you can get for their incompetence. Mayo and Stanford don't seem to be all they are reputed to be. People, and doctors included, don't seem to realize how much scar tissue can mess you up. All our organs are supposed to have the ability to move independently in our bodies, when they are bound up with scar tissue they can't function properly. I'm so sorry about your pelvic floor. Luckily my PFD was due to the shortened muscles and spasms from years of chronic constipation and my previous surgeries and temporary colostomy. I had good instruction from my PT and have made so much improvement my pelvic floor is essentially normal now except the muscles are still shortened. The PFD did affect my urination, I was going 18-20 times a day but just a few ounces at a time. That has improved too.

I had my surgery on 1/1/8/11. Subtotal colectomy with ileorectal anastomosis and lysis of adhesions. My surgeon had estimated it would take 2-3 hours depending on how extensive my adhesions were. It actually took almost 5 hours due to the scaring and the fact she hand sewed the anastomosis rather than stapled it She left about 1" of colon above my rectum to attach my small intestine to. Fortunately, she said everything else looked good and she was pleased with how it went. I was in the hospital 8 days due to my GI tract being slow about waking up fully. I had an epidural for 3 days, took oral pain meds for 2 days and was off all meds for the additional 3 days until I left the hospital (still haven't needed any since!). Once I got off the pain meds everything started working. It's that catch-22 of needing pain control but the narcotics slowing motility. I feel good, I'm active, totally independent, and things seem to be working well. I'm able to eat my normal diet. Yeah!!! It's a whole new world getting used to pooping normally and not spending hours using enemas to have a BM.

I think I have my life back...finally!!!

Lesley

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/28/2011 9:33 PM (GMT -6)   
WOW FIT4ever,

For now I have very good care as a permanent ileostomate that is, but if I ever get an adhesion reobstruction, I'm not sure anything else could be done for me.

WHO WAS THIS DOC WHO DID SO WELL FOR YOU AND WHERE IS SHE?

As long as we are saying good things about a doc on here, it is OK to include their name and hospital.

So glad your issues turned out so well. You are an amazing success story. Hope Boat who is new to the forum reads your story.

Rosemary

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 1/29/2011 1:41 AM (GMT -6)   
Rosemary,

Her name is Dr. Madhiluka Varma and she is at University of California San Francisco and is head of the colorectal surgery department. She is wonderful! I was referred to her from a pelvic floor physical therapist who had a client that went to her for a colostomy take down. I was put in touch with her client as we had both been to the same surgeon at a different hospital. We both couldn't stand him. I traveled from Colorado to California to see Dr. Varma. I had met with 2 surgeons prior to meeting with Dr. Varma. One of those surgeons was from Mayo Clinic the other was at Stanford.

I've had to travel 5 times in the past year to get to this point. I saw a very good gastroenterologist at Stanford to get a definitive diagnosis of colonic inertia. Where I live is very rural and there was no one qualified at home to do a difficult surgery like this. The difficulty being from the extensive adhesions. The gastroenterologist only wanted me to have surgery if absolutely necessary, as she put it "it won't be pretty" referring to the scar tissue.

I would definitely recommend her to anyone who needs colorectal surgery. I'm originally from the San Francisco Bay Area and my family still lives here so I am fortunate to be able to stay with family during my recovery and my previous trips out there for tests and meeting with doctors.

Lesley

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/3/2011 10:27 PM (GMT -6)   
Hi Lesley, I jotted her name down. Just in case. Thanks so much.

Do you know if she used seprafilm or spray gel or any of those adhesion barriers to stop or slow the growth of new adhesions?

Rosemary

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 2/3/2011 11:17 PM (GMT -6)   
Hi Rosemary,

She used seprafilm under the incision. She said it could interfere with healing if she used it near the anastomosis. So far, the incision looks great...better than the previous one! She said she used to use seprafilm but found people still got adhesions so she doesn't use it often unless she thinks the patient will need more surgery.
She didn't think I'll need more surgery but I asked her if she would use seprafilm and she agreed to. I was pleased that she listened to my concerns and did use it.

Lesley

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 2/26/2011 9:44 AM (GMT -6)   
Still doing good fit?

fit4ever
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 2/26/2011 12:04 PM (GMT -6)   
Regarding my recent surgery I'm doing great. I'm 5/1/2 weeks out from the surgery, I can eat my normal diet, no abdominal pain, swelling or bloating. Lot's of energy and been back to my normal activity level (except my weight lifting) for a month or so. I really feel "normal" again, I'd forgotten what that felt like! I've got my life back, and it's wonderful!!!

However, I developed an anal fissure that is excruciating!!! I've had them before when I was having to use enemas daily. Has anyone else suffered from this? What did you do to treat it? I mixed up an ointment with aloe, calendula, Vitamin E, and tea tree oil; I'm hoping it will help heal it up quick. I also have lidocaine gel I got from the Dr. It only offers mild temporary relief. Having a BM feels like I'm passing shards of glass, then the muscles spasm for awhile after wards.

Lesley
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