Total Colectomy w/ ileorectal anastomosis

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Lori Ann
New Member


Date Joined May 2008
Total Posts : 2
   Posted 9/17/2008 10:04 AM (GMT -7)   
New here, didn't know where to post exactly....
 
I am a 41 yr old woman who underwent a total colectomy (via scope) with ileorectal anastomosis.  I was in the hospital for a week and the first few days lost a lot of blood, but they watched my levels and they started to come back up before they had to give me blood.  I will say the pain from the gas trapped after surgery is something they don't warn you about.  It is the worst pain I have ever had in my life.  Walking and moving around helped more then anything!!!!! I can't stress that enough.  I had to stay kinda still when the bleeding was occuring but that passed as well.  I went from going one every 7-10 days ONLY after taking something to go.  My body on its own only went about every 10 days.  Colonic inertia was my final diagnosis.  With my job it makes it difficult to travel and be normal.  My days off consisted of (potty days as my hubby calls them) then you are exhausted from all that, sick from laxatives.  BAD BAD cycle but one does what they have to do to stimulate the system to go.  I tried every pill, potion, diet, foods, exercise programs, accupuncture, chiropractic, and lastly I exhausted my options with bio-feedback.  I flew to the Mayo Clinic in Cleveland to undergo that.  I opted against surgery for years because of my fear of a colostomy bag.  In 2007, it was detected I had a severe rectocele, had that repaired (never have had children so that wasn't the cause) then 6 months later the mesh patch started to erode and the permanent stitches started coming thru the skins surface.  So I had to go back into the OR because of the area the stitches were it couldn't be done in the office.  They clipped them and still they are finding their way thru again ( or so hubby tells me, I would never know..... ha ha he said "did we pay extra for the french ticklers?") My dr got a kick out of that one.......
 
I have spent the last year contemplating what to do and my husband had emergency surgery for a perianal abcess.  The dr on call that did his surgery I fell in love with and talked to him about my situation and he assured me he could fix it without a colostomy bag.  So I started that process and as of July 8th, 2008 I had the surgery and couldn't be happier with the success of it.  I went from going once every 7-10 days to several times a day.  Right after surgery I was going 15-25 times a day and all liquid.  I stayed with the soft foods for about 2 weeks and then from then  on I have eaten what I wanted.  It was like I woke up one day and started regularly going 3-5 times a day with a soft consistancy.  It will never be hard stool becuase the colon is what absorbed all the water from the stool.  I have the "feeling" once and awhile if I haven't gone but a few times in the day that "I need to take a pill to go (or in my case it was several) but those feelings are beginning to pass.  It has been a little over 2 months and I just started within the past 3 weeks to feel no pain and cleared to do whatever I want, lift what I want, no restrictions what so ever!  My incision is still a little tender but I didn't feel much pain there until about a month out and when it started healing more inside etc it would knot up and hurt quite a bit.  The bad part after surgery like I said was the gas pain trapped inside.  NO pain pills helped with that or shots or injections.  It is something that just had to pass.  Before surgery the only medications I was taking was thyroid and HFT (pills not the patch or creams) and never thought twice about what kinds of medications were absorbed in the colon and what were not.  I basically spent over a month without any medications and was very emotional, totally exhausted.  Both the meds listed were absorbed int he colon.  Anything coated, time released just goes right thru you with no colon.  Some break down in the stomach but full absorbtion isn't until the colon.  Vitamins had to be changed to gel or liquid and I switched to the hormone patch and my thyroid was increased to account for the part that I don't absorb.  Things are working out but I feel like I am starting from square one with those two which had been controlled and consistant for 11 years.  I don't have problems with hemmroids any longer which is great! I could NEVER EVER eat refried beans before because the gas would get trapped so bad I would be completely miserable for days! now I eat a can of beans for lunch quite often and have very little problem with gas, the same with peanut butter I couldn't eat before now I can.  You learn now which foods go thru you quicker but it is a learning process after that.  My surgeon did say he removed one of the longest colons he had ever seen from me so I guess that is my claim to fame! ha ha  Since the biopsy that was ran on it after removal he did say I tested positive for mixed cells in many many places, which could have been problematic later on.  NO more colonoscopy any longer! thank GOD because I had to drink over a gallon of that crap and prepare for two days.  Before surgery I wasn't able to eat for two and half days, surgery was at 1:00 pm lasted 5 hours because I had a great deal of adheasions from my hystrectomy scar, the colon was fused to it.  So no food for 2 days after surgery, then I finally got ice chips the 3rd day and then some water and liquids.  I never knew how much I looked forward to sucking ice water out of a washcloth!  Then ice chips were like  Heaven!  ha ha  Finally the scrambled eggs I never looked forward to before were looking like Heaven as well....
 
All in all things are pretty normal now.  Sometimes I catch myself getting in a bind when I wait to go and the longer you wait and hold it without a colon the more watery it gets so remember that.......I never thought I would have to learn where the public restrooms were but now I know where they all are in my small town....
 
Good luck and if anyone has any questions I would be happy to help in any way. 
 
Best of luck to you all,
Lori

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 9/17/2008 11:24 AM (GMT -7)   
lori,
welcome to the forum. you are at the best place for people who have had total colectomies. alot of people, just like me have had total colectomies with iliorectal anastomosis as well. I had my surgery on aug. 7th of 2008. I got a total colectomy and the connected my ilieum to my rectum. The food tolerances I am finding out I have a lot, but most of my intolerances are to junk foods, red meats, and practically everything carbs. I can only eat chicken, fish, canned fruits and veggies, and some peanut butter with saltine crackers. when I had my surgery, I was practically addicted to ice chips, and that gatorade stuff was nasty. I was in the hospital for only 4 days and had mine done lapriscopically. in 2006, I also had a rectal prolapse, and had surgery for that. The same surgeon who did my rectal prolapse surgery also did my colectomy. I had problems with constipation and that is how I got a rectal prolapse and had surgery. Then after that the constipation gotten so bad that i had a colonoscopy done where my colon was miscoloered, and than a sitz marker test, where all 24 markers stayed in the beginning of my colon. That is why I hd my colectomy because my colon stopped working and died. But after the colectomy, I am doing well. I am now starting to do alot better, especially with the BM's. At first up until now, everytime I ate, I would go 5-6 time for an hour and a half, and go overnight 2-3 times an hour and sometimes not making it. Now, as long as I eat the foods I can tolerate, I only go 2-3 times for an half hour and thats it. If I eat the "wrong" foods, I go all at least 8-10 times an hour and am up in the middle of the night going 2-3 times every hour. Well, welcome again and I hope you you are doing well on your recovery. I wish you good luck, and i am glad to meet you.

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/17/2008 3:50 PM (GMT -7)   

Welcome Lori!  Thank you for sharing your story with us.  Did you have an open surgery or was it laporoscopy?  I'm having surgery on Monday; in 5 days!! I go back and forth between being very calm and very nervous.  I have complete confidence in my surgeon, it's just the unknown that I'm worried about.  You know, the "after" part.  How bad is the pain going to be...all that stuff.  You can have people tell you their experience, but you can never be prepared for the pain; everyone feels pain different.  I found out today my check in time is at 11am.  I wish it was earlier, but what can ya do?  I am having my surgery through laparoscopy and probably hands assisted also.  I've had several abdominal surgeries including a c-section, complete hysterectomy, and I had my sigmoid colon removed last year.  So, my surgeon is going to do as much as she can without opening me up.

Well, thanks again Lori for sharing your story.  You are definitely in the right place!  Please keep posting, those of us who are waiting for surgery can't get enough personal stories. 

 


Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Nives
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/18/2008 1:14 PM (GMT -7)   
Next month will be a year since I had my surgery (total abdominal colectomy). What a difference each month has made with my recovery. I was in the hospital for two weeks. I had to stay an extra week because part of my bowels did not wake up. I was 28 years old at the time of surgery. I had chronic constipation and would only go about once a week with the help of all different types of laxatives. I think my body was in shock for the first 6 months after the surgery. I seem to feel better and better each month. Post surgery my bm's were about 10 times a day and 4 times a night I now go about 4 times a day and if I eat an early dinner I can go all night without having a bm. I do notice that if my eating habits are not good then I will pay for it later. One of my biggest concerns is pregnancy. I would love children in the near future and pray that my husband and I will be blessed when we are ready. If anyone has any questions or would like to chat, please feel free to contact me. My email address is mrsladytheresa@yahoo.

Best Wishes!

chatkat1965
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/25/2008 9:09 PM (GMT -7)   
I am hoping to connect with someone here. I have had a history of Crohns DX for several years. I was diagnosed with diverticulitis a few months ago and just had my second atatck of diverticulitis. My inflammation is in the splenic flexure. I have reconnected with my old dr who is now at Cleveland Clinic. He told me if I had a second bout of Diverticulitis he would refer me to surgery. I visited with Dr. Geisler this past Tuesday and he gave me the run down. I was very shocked when he said he thought I needed a colectomy. He says that my diveritculitis is in a very difficult spot - the splenic flexure and then he thinks because the Crohns is in the TI he is recommending a total colectomy. My infection reoccurred only one month after stopping antibiotics - also the antibiotic Cipro is giving me joint pain in knees - anyone else ever have this problem? Am looking forward to someone responding.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/26/2008 6:16 AM (GMT -7)   
chatkat1965--welcome to the forum! This is a great place to get your questions answered, or just reading the past threads is very educational...

I would suggest that you start a new thread so that your question will be more visible...

Are you on any other medications? I think we've (Crohn's patients) all had/have joint pain at some point, I don't think I say mine was related to Cipro, but the disease...right now, mine is in my hand, but has been knees and hips. I hope you can find relief:)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5695
   Posted 9/26/2008 6:29 AM (GMT -7)   
Cipro is known for pain. You might want to talk with your doctor or pharmacist about this. I t hink it's recommended not to use it continually if it causes pain.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/26/2008 10:33 AM (GMT -7)   
thanks suebear, I should have mentioned that...

chatkat1965
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/26/2008 12:57 PM (GMT -7)   
Well, I talked to my doctor's office today and they took me off the flagyl and Cipro. It is the Cipro causing the problem with my legs. I had my first diverticulitis attack back at the end of June. Was on Cipro and Flagyl for one month, had a repeat cat scan that was normal. Three weeks later (two weeks ago) I had a repeat attack of diverticulitis in exactlyk the same area (cat scan was positive). So this time I was only on antibiotics again and I am worried I am going to have another attack of diverticulitis (oh, the cat scan showed normal again). I have to admit I am a little worried that the infection is going to come right back. My doctor thinks it may be a "smoldering" infection. . . anyone have any input on this? Should I be concerned about infection coming right back?

chatkat1965
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/26/2008 12:59 PM (GMT -7)   
I forgot to complete the sentence - I was only on the antibiotics 12 days this time. Instead of 30 days.

Danika12
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/16/2009 8:48 PM (GMT -7)   
I am a 46 yr old female, history of IBS, Ulcers, GERD, Chronic Constipation, and Fibromyalgia, with ALOT of pain after evacuating. It's literally been taking over my life. I have to take anti-spasmatic meds and narcotics, the pain is so bad... July of 2007 I had pelvic prolapse surgery (to staple and mesh my entire colon back up where it belongs.) I was diagnosed with a rectocele, a cystocle, and a very large enterocele. I am now scheduled to have an ileorectal anastomosis on the 25th of this month (March 2009). I am very concerned that the constipation problem with go away, but the pain won't, due to all of the other problems I have. Has anybody had this surgery and then ended up with a ileostomy bag, in the end anyways?
                                                            Thanks Danika12
 
 

ng1031
Regular Member


Date Joined Jul 2012
Total Posts : 26
   Posted 12/4/2012 9:46 PM (GMT -7)   
Lori your story has given me hope. I have a consultation with a surgeon at Mayo Clinic on Dec 18th for my laparoscopic colectomy with ileorectal anastomosis surgery. I hope mine is successful like yours and will finally put an end to my agony.

SSarah24
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/22/2014 2:46 PM (GMT -7)   
Hello everyone, my name is Sarah. I'm new here but I've been reading healing well posts for a while trying to get information on people who have had similar problems. I'm 19 years old and I've been dealing with chronic constipation for 11 years now. I've been misdiagnosed what feels like a million times and just recently received the diagnosis of slow transit constipation combined with high pressure in the anal sphincter. I'm having a total colectomy with ileorectal anastomosis on Feb. 3rd and I'm looking to get some insight on basically everything from recovery to life after recovery.
Thanks guys!

been thru alot
New Member


Date Joined Mar 2014
Total Posts : 4
   Posted 3/6/2014 8:03 PM (GMT -7)   
hi everyone I am exactly 3 month out today from ileorectal anastomosis I take 8 lomodil a day and cholestyrmine 2 times a day I go to the bathroom 3-5 times a day but a couple of them are only liquid that comes thru with the terrible gas I get .
my questions are am I always going to have liquid gas and how long until I can come off these meds. and some times my bms look like little snakes and I have to push for a long time to get them out I am very depressed don't leave the house much just wanna no if this is it for me or will it get better I also take 4 amodium a day and the gas is terrible

been thru alot
New Member


Date Joined Mar 2014
Total Posts : 4
   Posted 3/9/2014 8:04 PM (GMT -7)   
can anybody help me with the questions I have asked

PoucherInTO
Regular Member


Date Joined Feb 2014
Total Posts : 156
   Posted 3/9/2014 8:52 PM (GMT -7)   
Hi - it might be worth posting your questions as a new topic, this thread started way back in 2008 and sometimes it's hard to read through old posts and get to the bottom - readers might be missing your q's.

OK, so you had your colon removed, and it's a tough recovery. I had mine out too, and it's important to keep in mind that the job of the colon is to remove water from stool. So, without the colon our stool is much more liquidy. I could never pass gas unless I was sitting on the toilet, because my stool was so liquidy I would always have poo come out with gas. If you have a water balloon half filled with water, air rises to the top and water to the bottom of the balloon. The same idea occurs in our bodies. Gas floats up or gets stuck a bit in our stool, but stool likes to sit below gas. So, you may never be able to pass gas without passing poo.

Snake-type poo that is hard to get out and needs pushing maybe is because you are eating something that is bulking up your stool. It is very important without a colon to keep hydrated, otherwise things slow down and you can get constipated. I drink 3.5 - 4 litres of water a day. I also have had a lot of kidney stones in my past, and without a colon you are at increased risk as well. When pushing try not to strain otherwise you may get a fissure or hemorrhoids.

If you are taking imodium and feel constipated, try cutting back on the meds and increase your fluid intake. Watch your diet to see what foods are causing gas - it's a good idea to keep a food journal.

Also, if you are not finding much relief talk with your surgeon or GI specialist to keep them informed of what is going on, maybe they have other suggestions as well.

Best of luck
Diagnosed with UC in 1990 at age of 10
Proctocolectomy with temp ileo and jpouch creation 1995
Ileo take down 1996
JPouch removed, butt closed and perm ileo 2013
Happy and healthy future!

goulding
New Member


Date Joined Feb 2015
Total Posts : 6
   Posted 2/14/2015 11:08 AM (GMT -7)   
I am due to have surgery on 1st April. my consultant is going to remove approx 4 feet of my colon and connect the remaining part to my small bowel, I am not sure of the medical term for this, I think it is subtotal colectomy & ileorectal anastomosis. The reason for this operation is Familial polys that are growing at an alarming rate and I have to have a colonoscopy 4 times a year. How successful is this operation and what is the down side. I will be having key hole surgery.Thanks for reading. Gill
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