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Total colectomy 2011.2

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Posted 3/10/2011 7:02 PM (GMT 0)
Allie, when you were first diagnosed as having a slow GI system, how slow was your stomach emptying and small bowel?? And how did they diagnose your rectal problem?

I am trying to predict my outcome from others results (which really wont give me much of an idea as we all are different, but its the best predictor I have). My stomach emptied on a dime (said it was slightly fast in fact, but healthy fast, not causes problems fast), and 10% of the content of the meal was in my colon by 6 hours (though al of it had reached my terminal ileum by 3 hours or so then just sat there for a while like in my small bowel follow through with barium...doc thinks it is because there is just stool in the colon slowing it from entering).
Posted 3/10/2011 8:06 PM (GMT 0)
Hi Boat,

I had to get my ileostomy due to an injury; I had no slow transit anywhere in my body. Your timings match mine. So to me, that would say without your colon (which is the only slow part of you)
that having your colon removed should do the trick. Others on here who have slowness in other areas, I THINK, had them prior to having their colons removed just because that was the way their bodies were. So as far as I can tell, you should be in good shape. Others with transit issues will be along soon in case I am wrong.

Packing for my 12 day cruise and trying to DOWNSIZE my packing, taking a LONG time. I do wish you well as March 17th your op date is while I'm away, Best wishes. Rosemary
Posted 3/13/2011 2:18 AM (GMT 0)
Any of you gals remember if the constipation ever made you hold water in your body/skin, and that having a bowel movement helped with i/made it go away briefly?
Posted 3/13/2011 11:34 PM (GMT 0)
Boat, all I remember is being bloated ALL the time. With the ileostomy, I hardly ever feel bloated.
Posted 3/14/2011 12:51 AM (GMT 0)
Yeah, I am so happy to hear that Lizzie is doing well. I hope she only continues to do so and get stronger each day.

I am still feeling great. The domperadone has been my miracle drug. My GI told me that a lot of people who have slow transit colon also suffer with slow everything. Such as the stomach and small intestine. As so in my case. The domperadone stimulates my stomach to contract and allows the external spincster of the stomach to relax and allow food out. When and if the medicine does stop working I will be able to try botox injections into the stomach muscle. Which has wonderful results and you only have to do it twice a year. I do however still take the miralax just to be careful. Do not want things to slow down. I cant believe how good I feel. I actually feel like going and doing anything now. I am entering dirt bike races this spring and so excited. Also going to be running in a marathon race. I have a new lease on life!!
Posted 3/14/2011 1:43 AM (GMT 0)
Hello everyone,

What great news Marisa!! So glad you're feeling well. And great news about Lizzie. You have both had such a difficult time, hope it's all behind you both now!!!

Boat, so sorry I haven't checked back in until now....life just seems to be so busy. To answer your question, I did know I had some pelvic floor issues because one of the tests showed that I did. It was the balloon test....can't even remember what the name was! It wasn't the defecogram....that was actually normal the first two times I had it before surgery. It wasn't until AFTER my colectomy that I had a third one when I had so much trouble getting the stool out that I failed that test. I also have a small rectocele, which may or may not contribute to my issues.

I would definitely get the urge to go....seemed like the stool got to my rectum and just sat there. It was horrible and was the most uncomfortable thing I've experienced. I did have a 10 lb 3 oz baby 30 years ago naturally (but there's nothing natural about having a baby that large!) and my doctors have always said that most likely contributed to my pelvic floor issues.

Prior to surgery my doctor felt the even with the pelvic floor problem, because I could expel the paste for the defecogram with no problem that surgery would be a success. It was initially, but after a couple months I started having the problem with stool sitting in my rectum. Now I take miralax 2x a day and things are pretty good. I do have to run to the bathroom more than I'd like, but I feel very good most of the time and can eat most anything I want.

Janie
Posted 3/14/2011 1:55 PM (GMT 0)
     I have slow transit in my brain, but think I'll keep it for awhile.

     Rosemary....I LOVE cruises but have been afraid to take one since my operation because of that Norovirus.

Posted 3/14/2011 5:37 PM (GMT 0)
I see, so the balloon test showed before surgery you had problems? My pelvic floor mri showed a small less then 2cm anterior rectocele that completely evacuates (surgeon said this was insignificant), normal and symmetrical puborectalis and iliococcygeus musculature without defects, and no rectal prolapse or enterocele. At rest, pelvic structures normaly located. With maximum strain on defecation, moderate pelvic floor relaxation identified with widening of the levator hiatus to 7.5 cm, normal width is 5cm. Bladder tilts posteriorly and descends 3.1cm below the pelvic brim, anorectal junction descends 5cm (he also said the moderate abnormal descent of bladder/anorectal junction isnt significant either.....I sure hope so lol!)

T minus 3 days and counting :)

Post Edited (boatnerj) : 3/14/2011 11:49:04 AM (GMT-6)

Posted 3/14/2011 5:51 PM (GMT 0)
boat, so glad to hear your tests results are good. yeah! you're good to go! when's your surgery? best of luck to you!!!!
Posted 3/14/2011 8:51 PM (GMT 0)
saint patricks day (thursday)
Posted 3/14/2011 9:00 PM (GMT 0)
wow that's close. i wish you all the best my friend and your surgery to be a great success! keep us posted!
Posted 3/14/2011 10:52 PM (GMT 0)
Boat,

You sound good to go!!! Good luck:) We'll all be praying for you!!
Posted 3/15/2011 12:52 AM (GMT 0)

Boat, with your test results, it sounds like you're good to go! Sorry for the delay in reply...it was one busy week of midterms. Now that it's over, I hope to get to bed before 5AM!

 

To answer your questions, I don't have an exact time for you, but the radiology reports said something like, "marked/significant delay in gastric emptying; prolonged transit through small bowel" and it was worse for the colon. It was SLOW! We knew from the start that I had rectal problems. My anorectal manometries were all abnormal, couldn't expel the balloon, etc. My doctors wanted to start with the total colectomy with ileorectal anastomosis rather than jump straight to an ileostomy because there was a change the TC would kind of kick start my rectum. When I went to biofeedback, the PT had to change out all her equipment because the resting tone of my rectum was registering at 40+ (it's supposed to be 0-2, max). Things got worse the more biofeedback was done. You don't seem to have ANY of those problems, so I wouldn't worry about it. Just keep relaxed as Thursday approaches and recover well!

 

I'm having an EGD on Wednesday, so we'll see if that shows anything. Either way, I need to have a current one on file if I have surgery this summer. Have any of you had problems with food sensitivities? Mine have been increasing like nobody's business. I haven't touched dairy or soy for about seven years, and now I can't eat a scrambled egg without a ton of bloating and pain. Grains and legumes are a "no" too. Symptoms are all GI; no classic signs of allergy like hives, itching, anaphylaxis. Thoughts? Ideas?

 

Hope you all had a great weekend!

 

Allie

Posted 3/15/2011 11:31 AM (GMT 0)
Boat - Two more days!! I'm praying for you.

Val
Posted 3/15/2011 11:34 AM (GMT 0)
Allie,

what's an EGD?

to your question, i have LOTS of food sensitivities. dairy gives me lots of bloat and pain, except for bio yogurts and icecream, most fruits and veggies give me real bad bloat and gas (even when cooked). i have a list of about 5 fruits and veggies i can eat (only cooked of course), any kind of beans, corn gives me lots of bloat and horrible pain, peanuts and citrus turn me into a soda machine, fiberous foods just stop me up and can cause me a blockage. white rice is too painful to eat, LOVE avocado, but just tried it for a second time a week ago (last time was a yr ago) and it was hell. my diet is very limited, but it's better than before the ileo.
Posted 3/15/2011 1:43 PM (GMT 0)
Ali, I don't think you are experiencing food allergies. I think it is IBS. I couldn't eat any milk products, including yogurt, before my ileostomy. Now, I still can't eat ice cream or drink milk, but I can eat yogurt. I also could not tolerate fiberous foods before the ileostomy, but now can tolerate small amounts. I actually do not have any pain from fiber, but instead will blow my wafer off because the output gets too thick. :) Hodaya, I also experience stomach pains from advocados, which is a bummer because I love advocados. I wonder why that is?
Posted 3/15/2011 9:47 PM (GMT 0)
To all the ladies with food issues. What you can digest is all about the bacteria in your gut. They are what give your body the ability to digest certain things like dairy, etc. You can eat fermented foods like yogurt, kefir, sauerkraut, kimchi, kombucha, or just supplement with a good quality strong probiotic. It will take some time for the "good guys" to build up though, and if you have a lot of inflammation/mucosal damage then you may have some degree of leaky gut, and you will have to try and repair that before the "good guys" will be able to take hold onto the villi of your intestines. Also, the more you avoid eating a food, the less you will be able to tolerate it. Your body only starts making certain enzymes when you are regularly eating foods that require those enzymes for degradation (this is why lots of people can have transient lactose intolerance).

Supplementing with digestive enzymes and some HCL is also worth a shot.
Posted 3/16/2011 11:36 PM (GMT 0)
Hodaya, when you and val say in posts in other threads that your docs left you with 2 inches of colon, do you mean 2 inches in addition to the rectum and anus? My doc is leaving a total of 7-8 inches, but that is only the anus and rectum. He is taking out all of my sigmoid, descending, transverse, ascending, and cecum. You dont mean your surgeons only left 2 inches of your/the others rectum right (wouldnt that cause really really bad diarrhea/incontinence)?
Posted 3/17/2011 2:45 PM (GMT 0)
boat, i don't know about inches, in israel we measure with centimeters. my surgeon lest 20 cm, but that including the rectum, meaning 20 cm from anus up. as you know, i was back with constipation within 2 mons post op. never had incontinence or bad diarrhea.
Posted 3/18/2011 8:22 PM (GMT 0)
What was the reason for that? Anismus/pelvic floor dysfunction??

Oh, by the way, I am ALIVE :)

Things went surprisingly well. Surgery ws 3.5 hours long and I tolerated the pain really well. Todays a little more pinful because they took out my catheter, and then I couldnt pee so they had to put it back in :(

Also had my first bowel movement today which was all blood (doctor said this would happen), so it is just the clot/blood from the anastomosis. Gotta start passing gas now to progress from ice chips and little sips of water.

Post Edited (boatnerj) : 3/18/2011 4:37:47 PM (GMT-6)

Posted 3/19/2011 2:54 AM (GMT 0)
Boat - I asked my surgeon for a total colectomy but he insisted on leaving the two inches of colon because he said that I would need a storage area - otherwise the waste would whoosh through me. I believe he was right.
You had your first bm really soon. I had my surgery on Wednesday and didn't have a bm until Friday night.

Val
Posted 3/19/2011 9:08 PM (GMT 0)
Boat, so great to hear you are doing well. Just walk, walk, and walk some more. It gets easier each day. By day 7 I was walking the halls of the hospital very well. I have 2 inches of colon left beyond the rectum. Which like the other ladies said is so the poo has somewhere to collect and not just come right out. My surgeon called it a blind opening. Start your fluids very slowly. I could not eat until probably around day 5 or 6. And that was just broth and jello. But, just start out with a bite or two and see how your belly reacts. If you try more it over loads your guts.

Any Lizzie updates? Been thinking of her.

I am still doing great. The domperadone seems to be doing its job. So as long as that continues I will not have to have a surgical procedure with my stomach. Doctor thinks I eventually will but not now. Weather here is awful. Snow today and cold. I want spring to come so bad. My dirt bike is calling my name every day!!

Hope you all have a great weekend!
Posted 3/20/2011 12:08 AM (GMT 0)
Well they basically left my rectum so well see how it goes :P . I believe he said he left 17 or 18 centimeters total.

I am not worried about not being able to eat for a bit, but when I will be able to urinate on my own. I guess urinary retention is pretty common post surgery (especially on us considering where they are cutting), so I dont want them to have to take out and jam in a catheter multiple times. I feel like it wold be hard to have a bowel movement or even pass gas given my muscles down there ae sore and weak right now :P
Posted 3/20/2011 7:15 AM (GMT 0)
hey boat, you made it :))) so glad surgery went well. you sound pretty good considering. it's normal to have problems urinating, i had a catheter for the first week post op. walk as much as you can, it'll help your bowels to wake up and the gas to pass easier.

my continued constipation is due to severe anismus and a slow small intestine.

Marisa, glad you're doing ok and the domperadone is helping you :)) hope you never need any surgery again.

boat, things will get better each day. hope you have a smooth recovery. hang in there. keep us posted. don't forget to use butt cream when bms start kicking in ;) thinking of you.

has anyone heard from Rosemary??? is she on her cruis to the bahamas already?
Posted 3/20/2011 10:39 AM (GMT 0)
Hi everyone, it's been a while since I posted or even checked in, just tired of the whole poop thing! I however, and thinking more and more about it as my last attempt to fix my issue will be in 3 weeks. If this doesn't work, I will most likely have to go to more drastic measures!

I have had surgeries for the last 3 years!!! My last was in November, and they joined muscles in my lower pelvic floor that were separated, to help with my severe decent, I think it is somewhat improved, however, now the poo won't come out at all, and I often have to manually dis-impact.. it's gross, but I was able to write it all down, and gave it to my surgeon. He has referred me to another surgeon, out of state, who specialized in muscle repair of the pelvic floor. MRI tests, and other tests reveal that my levator muscle on my right side is missing.. due to a child birth injury, PLUS I have another enterocele. They will be taking my thigh muscle, and reconstruct the missing muscle, in hopes that the rectum will be supported and the angle correct for me to go. Basically, it's a hernia, like a rectocele, but off to the side.

I do have another issue I haven't discussed with either surgeon, but think maybe someone here has had this issue. Since my last surgery in November, I have excessive, smelly gas, and just a lot of belly sounds.. anyone?

Hodaya, I skimmed through the post, but I think you were having big issues and faced another surgery..? can you update me?

Rosemary, is that lucky girl on yet another cruise!!?

Marisa, Val, and everyone else - hello!
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