TOTAL COLECTOMY PART 36

futurecanadian I had a total colectomy with an ileorectal anastomosis on October 26, 2009. I did have numerous complications one which occurred on November 17, 2009 and ended with emergency exploratory surgery for infection. Even though I had complications I would do it again in a heartbeat. I feel 100% better with no colon. I can eat without blowing up like a toad and my life doesn't revolve around trying to go to the bathroom. I suffered for 9 years before I decided on surgery. I too was told that if I continued on the same path I was that I would most likely develop pelvic floor dysfunction.

I recommend the surgery but everyone reacts differently. It just feels great to be able to go to the bathroom easily.

Jen

Tracy,

Your post was a riot! The thought of a bikini and a bag cracked me up. We could start a trend! These days there is tattooing, body piercings; we could start a beach trend of people wearing a bag of sh-- on their stomachs with our bikini's. You have to laugh at the visual image this conjures up. I'm laughing so hard typing this I can hardly stand it. One time I actually drove to the post office, went in, mailed a letter, came out and got back in the car before I realized I had not tucked my bag into my pants. It had been there for all to see, and NOBODY NOTICED! That really cracked me up.

Jen,

On a more serious note, now that I've collected myself from Tracy's post, I do agree that it is totally frightening that many docs are clueless about issues such as ours. True, we would not expect an anesthesiologist to be a colorectal expert, but didn't they all learn certain basics in med school? One would think. Good luck with your procedure. My guess as to the answer to your question about will the anesthesia cause ileus, I would say no. The amount they give for your upcoming procedure is much less than for major surgery. You will still be "out" but not so deep to cause an ileus. Plus your intestines will not be manipulated (my understanding is that is the major reason for ileus in addition to deep anesthesia.)

Best wishes, Rosemary

I am a professional female who is 29 years old and have been struggling for 3 years with stomache problems. I have been going to gasterentonolosigts 3 in the past 3 years and a colon and rectal dr. I have had 2 colonosquopies and several tests. The latest was the sidz marker in which they found most of the sidz markers stayed at the top of my inteestine and the latest dr diagnosed me with chronic inertia because for the past 3 years it has been IBS and I am so constipated that nothing except laxatives works. I have tried asuppositories, enemas, fiber, a nutritionist, gluten free and dairy free diet, u name it. The only thing that worked years ago when I was 21 was zelnorm. I am also in recovery from substance abuse and am on suboxone but such a low dose that the drs feel that alone cant cause it. I am very active and work out but in the past year my weight fluctuates so much and within a day or two of not going to the bathroom i gain 7 lbs. The next test I was told is through a GI surgeon who will check to see if its the pressure in my rectum and they will sedate me and put a catheter in my anus to see if my rectum is working. But after that, the dr says they will have to remove my large intestine and I wont have to wear a bag because theres no blockage as thats my biggest fear. The worst part about all of this is that the only way I can defacate is by taking 23 laxatives my body is now up to and I feel this is abuse and the drs know how many I am on. It started out being 12 2 years ago, but my body has become so dependdent on them. And all of this time they havent figured out what it was and meanwhile my body kept getting more and more dependent. Its so bad that I take them 2 times a week to defecate and I throw up bile and am in horrible pain in the bathroom for hours. I cant go out twice a week because I have to take them and if I dont lay down, I often throw up and I know my body is tellng me this is not healthy and its rejecting them. But the other alternative is to not defacate and be in horrible pain for literally weeks on end. I just want to know if anyones experienved this and if they had their large intenstine removed and what the possible side effects are and if they had to wear a bag or not. Please help me.

LLLLOLLLLL Tracy and Rosemary, you girls crack me up.. im laughing SO hard right now...... :D , yeah Tracy, you show'm!! Rosemary, GREAT idea about starting a new trend LLLLOLLLLL OMG i just can't believe your bag was out there all that time.... lol i bet they simply thought it was just a pouch for change money etc.... hahahahaha maybe they even thought it was pretty ;))) now the hightlight of this story would have been if someone would have came and asked you, "oh, what a nice pouch!! i'd LOVE to have one, where did you get it? HAHAHAHAHA.. ok i wonder, how would you answer that? lol you girls made my day... hi future and welcome! i'd say go for the surgery, seriously, the early you go, the more chances of a better outcome. Val, so glad you're doing good :) Rosemary, thanks for the explanation about the mucus and the bleeding. i'm glad your bleeding after suctions is nothing major. do you think i should do myself an enema like once a month or so? cause i do have an uncomfortable pressure in my lower abd and lately the rectum too. it comes and goes, cause you know, after the stuff sits there long enough you lose sensetion. i feel it mostly in the mornings. hi tummy, glad you joined us :)

Quinn,

I can totally relate to you. I had a total colectomy in March 09 and for the first couple months I went alot....at least 15 times a day and it was very liquidy. It was hard to leave the house unless I hadn't eaten for hours. Then in about month 3, things slowed down and I spent the next few months pretty miserable. I found that drinking a dunkin donuts coolatta really helped me go in the morning, but after that if I ate during the day I had horrible rectal presssure and I'd come home from work and use an enema. Then after dinner (I never ate much at one time) I'd start feeling bloated and miserable again. Finally in October I started taking miralax twice a day, and without it I don't go. My small intestine was tested before my surgery and it was fine, but I'm sure it's really slow and the test wasn't accurate. I also have pelvic floor dysfunction, which is probably the biggest reason I get the pressure in my rectum.

My doctors (both surgeon and GI) said miralax is fine and not to worry about taking it. Even with miralax, if I eat too much junk I still have issues and I drink prune juice and that helps to clean me out. The problem with miralax and prune juice is that it keeps me running to the bathroom several times after taking it. But it's so much better than before surgery where I was exactly like you....only went when I took massive amounts of laxatives and would be tied to the house about every 4 days when I took them. I lived that way from the time I was 20 until I was 53....and it got worse and worse over the years. Finally I couldn't stand it anymore; the laxatives weren't working well and I went over 2 weeks without going once and was totally miserable. I had spoken with Drs. over the years about surgery but I just couldn't do it. Now I wish I had done it years earlier.

If miralax works, I wouldn't worry about taking it. Also try prune or grape juice. Grape juice burns my bottom, so prune juice is better for me. I heat it up a little and swallow it really fast because I hate the taste. I use miralax 2x a day always, and probably have to drink prune juice or use an enema once or twice a week.

Tracy,
You are so funny! It is so encouraging to hear that you and Hodaya are doing so well with your "bags:)). I feel like I can handle the way things are now, but if the miralax stops working, I think that would be my only option.

Allie,
Yes the rectal spasms are the worst! Last 2 times I had them if was right after using an enema. Now I'm scared to use them, only have once since the last one, but luckily no problem.

You say you have slow motility even after surgery; what do you do to make yourself go? Are you on miralax or mom? I hope biofeedback works for you; I tried before and after surgery, but no luck for me. My surgeon wants me to try one more time, but since I have to pay so much out of pocket each time, and it's about 60 miles away, I may not. At least not right now.

Spoke with Lizzie via text the other day and she sounds very weak....keep her in your prayers.

Hope everyone has a nice weekend....we're going on a 3 day cruise next Thursday (to the Bahamas) for my birthday....my son and his wife, and stepson and his wife are going with us. I wanted to go on a longer cruise, but thought I should try this first. Still not sure how I'll be able to eat much....guess we'll see!

Have a great weekend everyone!

Janie

Hi Tracy,

Glad your doc was back on this planet. Maybe he was just having a bad day that last time, but today must have really restored your faith. Glad you called to tell me. My mom's 91st b'day was good. Lots of the other nursing home residents on her floor joined in too.

The funniest thing was that she got a summons for jury duty!!!! LOL LOL LOL! Of course, I signed the excuse form and mailed it in, but jeeze can you picture it???? She'd say "WHAT?" about a million times and the judge would go nuts. Don't they have people's ages on their roster before they send a jury summons out? Good Lord. She was cracking up laughing at the thought too.

Hodaya,

Yeah, I would've just said, "Yeah, that's my new purse, do you like it?" (In reference to my post of going to the post office and forgetting to tuck my pouch into my pants.) Shows you how people don't really notice a lot. They are all in their own world thinking about their own errands, schedules, etc.

If I were you I would try small warm water enema's for that recal mucous. A few small ones is better than a big one my ileostomy surgeon said. If you have Fleet salt water enema's in Israel, dump out the salt water, and just fill the container with warm tap water. That salt will burn your defunctioned rectum big time. Warm water will not. The cramping in the morning could be from the mucous. Or it could be from the gastrocolic reflex. I think that's what it's called. Like after breakfast I still get the urge to defecate rectally because that was when I used to go. It's sort of a brain body thing. Also when I'm able to pass rectal mucous on my own that is when it happens. Am not sure how I do that among rectal, colon, and pelvic floor scarring, but I passed quite a bit of rectal/colon mucous without an enema the day I got home from my cruise. It just slid right out. Still took multiple times, but it did come out. Go figure!

Newbies, glad you posted. The others with prior colonic inertia can fill you in better than I. I had a super colon and rectum and they were both wrecked by 2 surgeons. Now I poop into a bag out of my small intestine, but as things went, I'm lucky to be doing that and sure hope I continue to do so. Then in my free time I cruise everywhere.

Tomorrow I go line up my Africa cruise for October 12. I sure hope I don't catch Malaria. I'll just bring strong bug repellent. I dread to think what a Malaria pill would do to someone without the use of their colon. What if it gave me diarrhea? I think I'll stick with the bug repellent. Any ileostomates out there ever take an anti-Malaria pill?

Praying for you all, me, and of course for Lizzie. It's like C'Mon CC get her better. Take down those adhesions, Do that ileostomy, get her on her feet! That's what I would say to them. I'd thought of being a patient advocate, but I just would not have the patience with docs that is needed. I'd likely offend them all. BUT, she's what like going on about 2 years of not being able to eat? I think she unfortunately has had to beat my record of 13 months with no food? auuuugh!

Rosemary

Post Edited (esoR) : 8/12/2010 7:33:46 PM (GMT-6)

Janie,

Thank you sooo much for your reply. You have no idea how much I appreciate all the details and hearing your story...it helps to know that I'm not alone. I am 26 and so scared about all of this. I just didn't expect it to slow down this quickly and I'm feeling sorry for myself. Without my colon, aside from the recent slowdown, the bloating is so much better. I actually pee and I can get up everyday and do what I want, so I am still experiencing huge benefits.

The milk of magnesia really helps and miralax takes longer, but seems to help eventually. I will definitely try the juices you mentioned. Do you think that it is just simply slow transit in the small intestine (just like the colon)?

Rosemary,

You are so helpful and encouraging. I'm sorry to hear about your botched surgeries. It sounds like you try to make the best of everyday.


Thanks again and i hope you have a good weekend.

Hey everyone my d&c and ablation went well today. Of course I had to go over medical history with nurses and different nurse anesthesist and they all pulled back covers and wanted me to show them my bag...WTH! If I had one I would not be ashamed and would be glad to show them but what part of I don't have one is difficult...grrrr.

Anyway just having some major cramping but other than that ok. I have not gone poo yet and am hoping that will occur soon. I have tried but no luck. Drinking some grape juice and eating a little to try to start things back up hopefully. If not a little Miralax should do the trick.

I have been texting Lizzie everyday for the past week and she is really having a tough time. She really needs everyone's prayers. She is in a lot of pain and pretty down right now understandably.

Thinking of you all.

Jen

Hi Everyone,

 

Quick update: Lizzie is on her way to Cleveland. Something is wrong with the pouch, and it hasn't been draining. They don't yet know what is going on. The best thing you can do for her is to pray. Pray for wisdom for her doctors, that they would quickly find the problem and put a solution in motion. Pray also for peace for Lizzie and her family, as there are a lot of unknowns right now.

 

Thanks and love to all,

 

Allie

 

Allie,

Thanks for the Lizzie update. Pray for her that her docs DO something. THis cannot just keep going on and on. I will pray for her. Thanks again, Allie. Rosemary

Hi everyone! Leslie so good to hear from you. It has been awhile since you have been on. Welcome to all the new people. All of us here are great friends and invite you into this great group.

Jen, glad to hear your surgery went well. Why did you need a d and C? I had a hysterectomy after my last child so I do not have to worry about all that stuff anymore. I had two d&cs prior to my hysterectomy and lost a ton of blood so the they just got it all out. I do not have a whole lot left in this old body of mine.

My new puppy has been quite the little project. He is a white lab and so cute! Yesterday I looked out the window and there was pillow stuffing all over and he was just laying right in the middle of all of it. This makes 3 dogs for us now along with a cat, fish, hamster, and 3 kids. I know, I am a very wacky lady!!

Off to a family reunion. Love ya all and will checkin later.

Hodaya,

I would not be without the Eakin Seals. They save my peristomal skin. I get BAD burns without them.

Doesn't it just figure that we would be dealing with rectal (or in Mine and Tracy's cases colon and rectal) mucous? Seems like there's always something to get out of our butts. LOL

It was good that your internist gave you until the 25th off from work if your surgeon only gave you until the 8th. That in and of itself was very good. I don't blame you for not being ready to go back to work until about 2 or 3 months has gone by. Have you made arrangements with your supervisor for needed bathroom breaks and water drinking breaks?

Not sure what to tell you regarding more time off. That's a tough one. Maybe Tracy will have some ideas.

Rosemary

Hi all,

Apparently I've been here before, because I do have a log-in! I've been searching for a place to learn and share experiences after colectomy with ileorectal anastomosis. Guess this is the place!

My surgery was in mid-April 2010, after years of my GI problems being labelled as IBS.

Finally found a GI specialist who ordered all the tests, which took all winter. Found a surgeon, who specialized in colorectal surgery, and all agreed I was a good candidate for colectomy. No PFD issues, by the way.

I'm now 4 months post-op, and looking for tips, hints, suggestions, diet info, life advice, etc., for living with my new GI system. I get pretty 'dry' info from my GI dr., but have realized what I really need to do is hear from others who have had this surgery. Life is much better, of course. I still have fatigue, and I'm figuring out what foods I can tolerate, or not.

So that's my intro in a nutshell. I'm VERY glad I had the surgery. I still go 10-12+ times a day, usually about an hour after eating anything. (10-12 means in total, usually in episodes of 3-4 after mealtime.)