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Total Colectomy Part 34

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Posted 5/7/2010 4:20 PM (GMT 0)
Just found an interesting site...

I know I have a posterior rectocele, which they say is rare.. I'm researching and think I may have a "lateral" rectocele too, which I never heard of before. All I know is that when I go to have a BM, it bulges out to the whole right side of my anus. I have to press up in order to evacuate.

www.obstructed-defaecation.com/Welcome.html

Reading this site - ODS also has a lot to do with the shape of the rectum, which could possibly explain why some here without colons have trouble going!
Posted 5/7/2010 6:56 PM (GMT 0)

answers4me2 said...
Taurus, the 1st colorectal doctor thought I had hirsprungs, but the anal manometry showed I didn't. Nobody ever said anything about a biopsy though! Are you going to go back to the bag? How long did you wear the bag? Why are these doctors giving you such a run around? And waiting until the end of July is crazy.

..................................................................................................................................

Yes, I noticed I don't read much about "deep tissue biopsy's" here. I feel like I'm the only one who has had one. The biopsy was able to show that I had a lack of ganglion cells. That is one of the trademarks of Hirschsprungs.

The surgeon in Tampa did ask me how I would feel if I had to have a permanent ileostomy. I told him that at this time I would NOT want one. There has to be another option. I had a temporary ileostomy for four months after complications with my J Pouch surgery. And physically, it was the best I ever felt in my life. But it was a nightmare trying to control the thickness and amount of output. It was constant and I never got a good nights sleep. I cannot go through that again.

Posted 5/7/2010 9:56 PM (GMT 0)
Hi everyone.. I've been reading the posts and want to share something.  I never had constipation comlications until the week after I had cystocele and rectocele surgery.  Afterwards, I could go a month and still not have a bowel movement on my own.  Many times I had to go to the emergency room and be disimpacted. I've always wondered if something went wrong during those surgeries that has caused me all of this grief.  Can previous operations give someone colonic inertia?  (This is a good question).. idea

For all of you that are nervous about having an ileostomy, I am too, but I am ready.  Having a bag velcroed to my leg for a year has been awful.  I feel that maybe this was God's way of preparing me for an ileostomy.  Last year, I really wasn't mentally ready for an ostomy.  We need to look at having an ileostomy as a medical procedure that will make our quality of life so much better.  It's easy to beat ourselves up over this and I don't think that anyone can ever be totally mentally and physically ready for these surgeries, but we can try..

I have a 60% chance of not making it thru my surgery, but I can't let my fear take over.  My depression has been horrible.  I've been hospitalized for it, because of all of my worrying.  I don't understand why we have to endure this. 

My husband has been my hero and cheerleader throughout the last year.  I'm hoping that after June, I can recover and we can begin the rest of our lives.. yeah

I love you all very much and want to thank each of you for helping me thru this difficult time.

butterfly

Posted 5/7/2010 11:01 PM (GMT 0)
Butterfly,

I know that you will make it through surgery and everything will be fabulous! The most important thing is to keep your head up and stay strong, I know it's alot easier said than done. Just remember you have a great loving husband there for you and ofcourse all of us here to support you through it all. You will be okay and everything will turn out to be better than you could have ever imagined! Stay strong and you will continue to be in my prayers along with everyone else here.

You are loved and so strong, you can do this!

Amanda
Posted 5/8/2010 12:43 AM (GMT 0)
taurus,

so you have the name of your problem causing persistent constipation after colectomy: rectal inertia/neuropathy. if you had fewer ganglion cells in the rectum, then it is very likely that the condition will progress in the rectum too and that it has been doing so since you had no problems after colectomy first.

I also have/had severe rectal inertia with (prior to my ileostomy) excruitating rectal spasms. if I had an ileorectal anastomosis the rectum would act as a complete obstrcution, even enemas and supoositories or oral laxatives would fail las they did in the past.
I can't afford any additional blocking/obstrcution since my small bowell and stomach have slow motility, too.

Sarah
Posted 5/8/2010 1:02 AM (GMT 0)
Decreased ganglion cells are called hypoganglionosis, a finding that German pathologist once also stated after analysis of my resected bowel tissue, together with much more abnormalities not onyl in the nerve tissue but also in the smooth mucles. I probably have a neuropathy combined with a myopathy (damage to the smooth muslces) which causes my CIP.

Hirschsprung's disease would be the complete LOSS of ganglion cells within a segment which can vary in its lenght but most cases only have their left colon/sigmoid/rectal area involved. Total colonic anganglionosis (another word for hirschsprung's) is rather rare.
Analysis of bowel tissue from patients with slow trabist constipation suggest a degeneration of ganglion cells by a decrease in number and size. BUT they were once developed (in contrasth. is a congenital, developmental disorder, nerve sells in the gut of the embryo do not develop adequately), it is a degenerative process called atrophy. that is why it is called a atrophic hyopganglionosis. it is rather an undefined entity in contrast to the well.defined hd's.
However, this process involves often the whole colon with different degrees of severity whereas in hd's there is a sharp border and above this the nerve cells are well developed, below they completely lack.

hoddaya,

i think you have severe rectal inertia/neuropathy with reduced rectal filling as well. As I mentioned if I had only CI and and ileorectal a. it would have not worked either and I would not have been able to pass anything even with the help of oral laxatives, that#s for sure.
Your rectum does not seem to induce the approriate filling from the small bowel. That seems to be your biggest problem, in contrast to the others who seem to have more problems with the stools being transported THROUGH the upper to the lower rectum and getting the stools out while they have already travelled INTO the rectum. That is why the expereince horrible rectal pressure on the pelvis but you don't have this, do you?

Sorry, if I should evoke the picture of being a know-it-all, I am actually not but have done quite a bit research which was neccessary to survive the last years

Post Edited (pelztier86) : 5/7/2010 7:16:09 PM (GMT-6)

Posted 5/8/2010 1:39 AM (GMT 0)
Jenise,

Great ODS site! Thanks for the link. I was operated on for the redundant sigmoid when all I really had was the dropped small bowel loops. This site gives perfect examples and pics. I will forward them to my atty. Thanks so much. Really simplifies my case re: the radiology piece.

Lizzie,

Thinking of you. Hope all went well today and they fixed you in whatever way will WORK and give you peace and health.

Rosemary
Posted 5/8/2010 2:09 AM (GMT 0)
Jenise, that website is what I copied off and took to my doctor, along with a couple of others. It really helped me to stay focused and to ask the many questions that I had.

I did talk to Lizzie last night through text and her surgery was early this morning. Do you guys think we should text her to see what has happened and how she is, or wait? I don't want to bother her...

Jenise, these prolapses are horrible. I thought the sacralcolopopexy was a sure and LONG fix. Looks like I was wrong with me and you both having repeated prolapses! But, my doctor did say the straining is a cause of rectoceles, and they would come back again and again if we continue straining. UGH

Peltzier, what is this neuropathy of the rectum. My doctor specifically said I didn't have neuropathy, which, I assume is a great thing. Is that what you have?

Taurus, what happened with your ileostomy? The output was too much and too thin, or was it too thick? I really hope I do okay with the temporary ileostomy because I don't see that I have any other choice.
Posted 5/8/2010 3:11 AM (GMT 0)
neuropathy just means damage to the nerves no matter what organ is affected.

if it affects the colon this means colonic inertia; if it is the rectum, rectal inertia or neuropathy; inertia ist the most severe form of neuropathy when there is almost absent normal function.
Posted 5/8/2010 3:14 AM (GMT 0)
Tracy,

I just sent you an important email. Rosemary
Posted 5/8/2010 12:59 PM (GMT 0)

answers4me2 said...

Taurus, what happened with your ileostomy? The output was too much and too thin, or was it too thick? I really hope I do okay with the temporary ileostomy because I don't see that I have any other choice.

................................................................................................

My output was both too much and too thin. Obviously, it drained during the day almost non stop. But ileostomies tend to do that. But for some reason, it drained even more at night. I'm talking 2 in th emnorning I would wake up and my bag would be about to explode. So I would empty and an hour later, same thing again. My output was unbelievable at night. And I tried everything to slow things down. But nothing worked. So I had to get rid of it. I was miserable. And it was interfering with my personal life. But physically I felt so good though. I never realized how important it is to get all this bad stuff out of your body. I guess that's because I have been constipated my entire life.

Posted 5/8/2010 3:24 PM (GMT 0)
I heard from Lizzie on text message....YAY....she is doing well. She has a fever and some breathing problems, but seems in good spirits. I am so relieved to hear from her.
Posted 5/8/2010 3:51 PM (GMT 0)
Tracy, Does she have the bag or internal pouch? Rosemary
Posted 5/8/2010 3:57 PM (GMT 0)
I assume the internal pouch. I just texted her to ask her to be sure.
Posted 5/8/2010 5:10 PM (GMT 0)
Ok, thanks Tracy. Let us know as soon as you can. If it's the internal pouch I sure hope what they did works. Prayers with her. Rosemary
Posted 5/9/2010 2:20 AM (GMT 0)
Still no word from Lizzie, but I am betting she is resting.

I am wondering if I can do my own prep before my colonoscopy???? I been chugging miralax capful after capful just trying to see if it will clean me out. I don't think I can drink the gallon of crap that they prescribe. What do ya'll think?

I had some watery poop last night, but still semi-solid poop today???? I must have a colon full of poop. Also, I am still not going enough at a time....even the mag citrate didn't make me go "more" at a time. I don't think anything will make me go enough. Maybe I can start the prep 2 days early and not eat any food for the 2 days.

I am very worried about getting my colon cleaned out.
Posted 5/9/2010 3:06 AM (GMT 0)
Hi Girls,

I too heard from Lizzie very early this morning; sorry I didn't let you all know but have had some family issues going on.  She told me the same thing as Tracy but no other info.   I told her not to contact me, just rest and we are all praying.  I will contact her again tomorrow. 

Tracy-Before I had my colectomy, I was on clear liquids for 2 days, then the 3rd I continued with clear liquids, took 4 dulcolax and a bottle of miralax mixed with 64 oz of gatorade.  I then fasted from midnight the 3rd night until my surgery at 6pm on the 4th day.  I don't know if I was ever really fully cleaned out bc it never ran clear & I was too busy vomitting from the mega doses of antibiotics prescribed but it worked better than any 2 day prep I had ever used for any of my previous colonoscopies.  I know this is for a colonoscopy but it may work for you.  I've been thinking of you daily and of course you are always in my prayers and will continnue to be.

Hodaya-Always in my prayers dear one; I hope the drs can help you soon and you will finally be free of pain and become healthy.  Love you so much!

I had a very good week at school with the kids and finally able to walk with them for the first time in 2 yrs.  Didn't walk much but each step was a blessing.  Still have discomfort in my back but not as much mostly at night most likely from doing too much to soon.  Dr called me to discuss things and see how I was doing and you know you've seen your dr WAY too much when he calls and says hi this is ***, it was his first name LOL.  We discussed my case & he said he was estatic that I was feeling better and when I said I don't know how to ever thank him & he said I just have! He wants urine tests & me to see a nephologist even though I already have one; he said no  I want one up here with me which is fine.  I told him we are never doing this again & if I ever get even I more stone no matter how big or small the kidney is coming out, promise me, he laughed &  said he would discuss it at the time, I said no way. If you think of putting in another stent then you're getting one in yourself for the same amount of time, he laughed and said we're going to prevent them so I'm very interested to see how seems my kidney is deformed and "supposedly" that's one of the reasons why I form them bc the urine sits in there too long.  It will prove to be interesting. LOL

Thanks so much everyone for always listening to me with all of this when you have so many difficulties going on.  You have been and continue to be my true confidonts and family.  I love you all so much and can't wait until we can meet someday:)

I know that my colectomy has been a true success case and many people come and go on this site but I will always be here for you; it may be awhile inbetween posts due to my schedule but I continue to pray everyday for all of you.

Peace, healing and prayers,

Judy

Janie, Marisa, and the

Posted 5/9/2010 6:10 AM (GMT 0)
Tracy - When I had my colonoscopy I had to drink the gallon of golytley but when I got to the hospital I wasnt fully cleaned out so they gave me warm water enemas until they said I was clear enough to go ahead with the colonoscopy. They might do the same thing with you. I currently feel your pain with the golytley. I have my total colectomy on monday and this afternoon I had to drink a total of 5 gallons of that stuff. Hopefully that clears me out!

Everyone is in my prayers!
Posted 5/9/2010 6:49 AM (GMT 0)
When I said gallons I definitely meant liters, sorry to give anyone a heart attack after reading that!!
Posted 5/9/2010 12:58 PM (GMT 0)
Tracy, be sure to go on alight diet (eggs, pasta, etc) 5 days before and at least 2 or 3 days before - be on liquid. I've had 4 bowel preps last year (and my colon surgery - he had me do nothing!!) I did have to drink the gallon of golytley 2 times.. it's awful.. and it's the same stuff Miralax is made of! Even though my colon surgeon didn't require a bowel prep, I would never not do one now. I was stuck in the hospital for 9 days because I couldn't poo.. only to find out I almost burst open with a rectum impacted! Gosh - that was awful!

Judy, so nice to hear from you and sooooooooooo happy your are stent free! Hope everything at work has worked out. As always, your the ray of hope here!

Lizzie, not sure when you'll be able to read, but sending my love and prayers.
Posted 5/9/2010 1:01 PM (GMT 0)
Oh.. and I asked a question on one of my posts and nobody answered :( It makes me think I'm alone in this - and it scares me!!

Jenise said...
So, I have a question I think I asked before and don’t recall anyone replying. I know a few of you have had rectoceles and rectal prolapses… and now I’m back to square one again. I once again have tissue or rectum protruding out of my body when I have a BM. This scares me, and was the reason I finally sought help over 1 year ago! I’ve had 2 rectopexies.. so can it possibly be another rectal prolapse or is the the rectocele!? I know I need to address it my my doctor, but I just wanted to ask my girlfriends here.

Posted 5/9/2010 2:15 PM (GMT 0)
Jenise, I am not sure about the rectal tissue protruding out of your body???? I would assume this is a rectal prolapse or maybe you have rectal intussusception too?

Well, I don't think the miralax is going to work alone. I will try adding the senokot next weekend...I am going to experiment to see if that works.

Judy, so glad you are feeling better. I hope you just get better and better and the kidney keeps cooperating. You deserve a break from that!

Jacoby, I feel for you. The bowel preps is a nightmare for me because my body won't even let medicine induced diarrhea out of my body. Only little bits come out at a time and they are hours apart??? I don't even have an urge when the stool is liquid. Wow, you are getting the total colectomy Monday! Is it going to be an open surgery or laproscopically? I will pray that the surgery is an easy one. And I hope it is successful. I forgot, but do you have any outlet issues?

Maybe we should get a colonics....would that work if we took alot of golytely beforehand to melt the stool down?? But, I never had one and am scared to get one...
Posted 5/9/2010 4:22 PM (GMT 0)
Tracy, that's what i also thought, that the first plus with the bag that it will save time... yeah, i won't have to spend 3 hrs every morning to finish with b/r trips. i'm trying to adjust over here. i don't think you will be dehydrated easily cause you'll still have most of your colon. Jenise, rectal prolapses, intussusceptions, rectoceles - all of them can come back, esp if the person is still straining significantly to defecate, so yes, it could be yours is back. i just said it few post ago - i has a 2.5 cms rectocele and a severe intussusception, had the STARR, it really fixed it all 100%, BUT, i still had my inert colon in me, still very constipated and still staining A LOT, so 6 mons after the starr i had a 1/2 cm rectocele, then 2.5 more yrs the rectocele grew to 2 cm. so now i have a 2 cm rectocele + a moderate degree of pelvic descent (the descet is totally new - i neve had that). all that is only from the straining. how's your foot? a lateral rectocele..??? i've never heard of that either
Posted 5/9/2010 4:28 PM (GMT 0)
Sarah, my last defecogram (2 weeks ago) was normal. and also, when the stools is in my rectum, i'm able to push it out. my prob, as i feel it, is more like the stools is having hard time getting into the rectum, like it sits right above the rectum and takes way too long to enter the rectum, which can last for a whole day and it's very uncofortable in my lower abd. if i don't take something to go, it will be stuck there for days. but as soon as it enters the rectum, i have no prob emptying it. i have a question to you Sarah, in my last defogram, it wasn't showed any anismus at all, so do you think that removing my rectum and creating a J pouch could be an option for me..? i mean, they will have to leave about 5 cm rectum up from the anus, so do you think it can work for me?
Posted 5/9/2010 4:44 PM (GMT 0)
Tracy, when the rectum pops out of the body, that's a rectal prolapse. when it goes like a telescope (you explained it yourself once) - that's intussusception. good luck with the prep! Judy, SOOO glad you're feeling better, thanks for chekcin in :)
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