Removal of Rectum, What to expect???

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RE: Removal of Rectum, What to expect???

by ochapa on Tue Jun 20, 2017 03:32 AM

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Hi Kelly!! Thank you for sharing your story. My mother has Stage 3 Adenocarcinoma of the rectum and we cound an amazing surgeon on the west coast @ USC, Los Angeles. He does the 3D laparascopy colorectal surgery and his other Dr's use the robotic technique. 

My mom starts tx this week, tomorrow is her 1st appt for rad. onc. What should she expect to feel after taking the xoloda and rad tx.? She has to be near a bathroom at all times. I feel so bad for her. And now she is in pain. I wish her all the best. The dr. also mentioned that he can save her sphincter muscle but won't have the constraint if that makes sense. 

How are you doing now? Cancer free? Did you do the chemo after the surgery like they suggested? Thank you for sharing.

RE: Removal of Rectum, What to expect???

by Dferwerda on Mon Jul 17, 2017 08:10 PM

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I'm not sure how old your post is, I'm new to these sites. I had my rectum removed in September of 2016, ileostomy until April 2017, when it was reversed. I have the same problems you mentioned. I've heard the frequent passing of small stools is called "clustering". The burning, for me, is awful, and I have it most of the time. I was told when the clustering happens, it's due to constipation and to take 1/2 bottle of magnesium citrate, filled by a large glass of water. It'll clean you out but boy dies the peri anal area become irritated, although mine constantly is. Have you found any answers? I was also told to take citracel, 1 tsp on the morning with applesauce or yogurt to firm up the poo andvto help it become more "formed". Honestly, I regret having the reversal. The ostomy was so much better than the pain I've experienced these last 2 1/2 months. I'm hoping it gets better. Doc keeps repeating "it takes a year". If things aren't dramatically different next April, I think I'll opt for living with a colostomy rather than what feels like hell on Earth, most of the time. I'd appreciate any advice or tips you've found helpful. Sorry this is so long. Thank you, Dawn

RE: Removal of Rectum, What to expect???

by MikeMcD on Mon Jul 17, 2017 11:30 PM

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I had my rectum removed (like a complete and utter F%#'n FOOL) in 2012.  Walked in and submitted myself to unnecessary surgery because "maybe" I "Could" have the cancer spread to the rest of my body... maybe. When the "Dr" took what was left of my poor Rectum to pathology, they told him they couldn't find any cancer in there... anywhere. Well, 5 years later, my body (colon) has accommodated, sort of. My tip is to gave up whole wheat bread! The bran feels like tiny knives scarring my shrunken colon. I have cursed my surgeon every day for the last 5 years. It helped to name every mini-turd after my surgeon, out-loud. 

RE: Removal of Rectum, What to expect???

by loulou7 on Tue Jul 18, 2017 03:58 PM

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On Jul 17, 2017 8:10 PM Dferwerda wrote:

I'm not sure how old your post is, I'm new to these sites. I had my rectum removed in September of 2016, ileostomy until April 2017, when it was reversed. I have the same problems you mentioned. I've heard the frequent passing of small stools is called "clustering". The burning, for me, is awful, and I have it most of the time. I was told when the clustering happens, it's due to constipation and to take 1/2 bottle of magnesium citrate, filled by a large glass of water. It'll clean you out but boy dies the peri anal area become irritated, although mine constantly is. Have you found any answers? I was also told to take citracel, 1 tsp on the morning with applesauce or yogurt to firm up the poo andvto help it become more "formed". Honestly, I regret having the reversal. The ostomy was so much better than the pain I've experienced these last 2 1/2 months. I'm hoping it gets better. Doc keeps repeating "it takes a year". If things aren't dramatically different next April, I think I'll opt for living with a colostomy rather than what feels like hell on Earth, most of the time. I'd appreciate any advice or tips you've found helpful. Sorry this is so long. Thank you, Dawn

My husband felt the same way like you for 6 months after his reversal. Wanted to get a colostomy but surgeon said to wait a year. Well upon her suggestion took some metamucil 1 rounded spoonful in a 250ml glass of water to bulk up the stools and about 2-3 imodium at every meal to slow down the transit. Well it worked ! Also for the burning skin in the peri anal region he used a triple antibiotic cream plus a hydrocortisone cream .05% all over the counter creams. These were the only creams that worked for him and daily baths. Now he can go about his work, go to the restaurant, have a more regular life. He can go about 3-4 times in the morning sometimes not at all for a few days. he is a lot more happy now after 14 months. So courage it should get better !

RE: Removal of Rectum, What to expect???

by Abygail on Tue Jul 18, 2017 09:25 PM

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Hi Dawn, I think I posted like in 2013 or so.  So this is how it goes.  Right now things are good because its gotten progressively better as time has gone on.  I do have clustering every once in awhile, but not often.  I keep myself on the edge of constipation because that's what works for me so that I can have a life.  I cannot eat raw veggies, like brocoli, cauliflower, or celery, and carrots.  a small salad is okay and so are tomatoes and onion.    I take 2 lomotil a.m. and 2 p.m. I cannot eat anything greasy, too chocolatey, little bread, cool whip, and butter. Time Dawn...give yourself time. I've been to Mexico, Europe, and everywhere else and it was only an issue 1 time that lasted maybe an hour before bedtime.  And was my fault...too much Mexican food.   I am going to see a pelvic floor therapist as I have problems shooting poop out, but otherwise, so far so good.  Stay strong thru all of this Dawn.  I was so sad when I first posted.

RE: Removal of Rectum, What to expect???

by Abygail on Tue Jul 18, 2017 09:33 PM

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6 years for me tooo...bread does the same thing for me.  Bran or anything with too much fiber, forget it.  I'll be on the toilet for hours.  I keep myself on the edge of constipation because I need to have a life.  But I do still do the small turds 8 or 9 or them a couple of times per day.    Its so weird, I can feel them coming down and do lots of kegels to keep them in.  But I haven't had diarrhea in a long long time.  You find what works for you and that becomes your new normal.

I'm glad I had the reversal.

  

RE: Removal of Rectum, What to expect???

by Abygail on Sat Aug 26, 2017 02:50 PM

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Hi Sheryl.  I know that it sounds harsh and it sound impossible to think that this can be done to your body and this is what your going to have to do during the heaing process..but it is a process and you move beyond it.  For me those tissues are were very delicate and have been radiated and burned.  Suddenly this very acidic feces is coming thru those burned tissues and burned muscles and it uncontrollable and painful.  I had to wear depends because I had no control.  For the first 2 to 3 months it was terrible and it was your trying to gain some control.  About 3 months later I gained some control and could put the depends away and wear cotton panties which was a miracle because I hated those plastic depends which are so uncomfortable.  It will take the right combination of food, drugs, and therapies that are going to work for just you and you'll go thru a few phases of life before you finally gain control.  I wish I could have stayed home during that time as I wasn't ready to go back to work, but I had to.  Now I have it all under control...I'll occassionally eat something I shouldn't and I'll go to the bathroom 15 times in one day, but I learn from my mistakes.  6 years out, I do it all.  We go o, long vacation to Europe, I hike 5 miles everyday, I work part time but I could work full.  I don't hurt, I have control of everything.  Do you kegels, follow a low residue diet for a little while after surgeryt o control things and get you some good pain meds as you'll need them the first 3 months after surgery.  I took pain meds, sleeping meds and anxiety meds for 6 months after surgery and than dropped each med as I worked forward in healing...I haven't anything in years.  They provided me the crutch I needed to make everything tolerable.  Please let me know if you have any questions.  Be patient with the healing process.  It isn't easy, but here I am...I've had a normal life for about 4 years now.

RE: Removal of Rectum, What to expect???

by Abygail on Sat Aug 26, 2017 02:53 PM

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Sorry for the sloppy writing...I'm trying to do 10 things at one time including trying to cook breakfast for my husband and feed the dog.  Let me know if you don't understand what I'm trying to say and I'll rewrite it.

RE: Removal of Rectum, What to expect???

by birdiehoyle on Sat Aug 26, 2017 08:23 PM

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I have not had the best out come.  I had my rectum removed in July of 2014.  I had a bag for 8 months and then was re-attached Feb 25, 2015.  I have had chronic diarrhea ever since.  I eat imodium and codine like candy and nothing seems to help.  Can you please tell me what kind of thing you can and can't eat and what medication you took.  I am desparate and will try just about anything.  It has ruined my marriage.  I would appreciate any suggestions you can give me. 

RE: Removal of Rectum, What to expect???

by lisamancino on Sat Aug 26, 2017 08:58 PM

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Omg my heart bleeds for you!!! I've been dealing with crohns and crohnic diareah for about 30 years now! But the worse has been since they took my rectom out! The dr acted as if it was nothing and I would lead a normal life!!! He was so very wrong! I pop like a new born baby and most of the time I don't even know I'm going!! I have absolutely no control and have to wear panda everyday and adult diapers at night sometimes!!! Not so great for my social or sexual life to say the least! I'm not married, I'm single and my life pretty much sucks! First matter what I eat, sometimes I just goes right through me in seconds! I avoid sugar, raw veg , red wine, I can sometimes tolerate white and vodka, but nothing with sugar, banana are about the only fruit I eat, You just have to take notice which food effects you the most!! I take a presentation Imodium pill like 6 a day!! Sometimes it helps sometimes not at all!! I had a bag for a year and a half and o thought that was the worse time of my life but now I wonder if it wasn't better, I also get this burning diareah and my bum gets blisters and I'm in so much pain and I have no idea why that happens! Neither do the doctors?? I also have a stinosis, which is a closioof the bowel which makes passage very hard sometimes!! Well most of the time!! God help us!! Right hope I could help some Lisa
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