Total Colectomy 2011.1

New Topic Locked Topic Printable Version
249 posts in this thread.
Viewing Page :
 1  2  3  4  5  6  7  8  9  10 
[ << Previous Thread | Next Thread >> ]

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 1/10/2011 4:41 PM (GMT -6)   
Hi All!
 
Since our old TC room/thread seems to have gotten buried over the holidays, maybe we all start fresh here with the new year. I know we all scattered a bit...hopefully this will fix that.
 
Keep those prayers going for Lizzie, as she is back in Cleveland. They are trying to figure out why her bowel isn't working correctly, and solve her bladder problems.
 
Also, check out Sarah's CaringBridge site about CIP and her battle against it. You can sign up for updates so you will receive an email when Sarah posts a new journal entry. Stop by and sign her guestbook. caringbridge.org/visit/cippelztier86
 
Love to you all!
 
Allie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/10/2011 11:01 PM (GMT -6)   
Good idea starting this new thread. Tracy and I were talking on the phone and we both said, "Where did everyone go?" Rosemary

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 1/11/2011 1:19 PM (GMT -6)   

I hope it can help get everyone in the same spot again!

 

Rosemary, I read somewhere that there's a possibility of a future cruise to Russia. If that happens, and I hope it does, I will need to see pictures! February 2007 was when I completely hit a wall and life totally stopped. I had been very sick since 2003, but February 2007 was the point of no return. That summer I was supposed to go to Russia for three weeks with an organization called GAiN (Global Aid Network, a ministry of Campus Crusade). The trip was to start in Moscow, then go all throughout Siberia, going from orphanage to orphanage to help out, hold those precious children, and bring food and supplies. I still hope to go someday when I'm well, but out of all the things I have missed out on being sick, that one was the hardest to let go of. I hope and pray your years of cruising continue without complication or interruption!

 

Have you ever had issues with your stoma retracting? What are the approximate dimensions of your stoma? Does it change with peristalsis? I just want this done right the first time to help ensure as few surgeries as possible!

 

Hodaya, I am so sorry to hear you are still having problems. I hope the appointment with the CC-trained surgeon goes well and that he knows just what to do! Please keep us posted!

 

I called and rescheduled my secret recon appointment with my surgeon for next Wednesday because I tested positive for Strep...not something I need to be sharing with ANYONE in a surgeon's office! Thank you all for posting questions I should ask, sharing your experiences, and bringing up all the problems that can occur with a loop ileo.

 

The nutrition team at Cleveland is deciding which route to take to get Lizzie's nutrition where it needs to be. Before doing TPN, they will have to do tests on her vessels because of her history of clots. The other possibility is tube feeds. If they go that route, she will have a tube down her nose at first to see if her system will tolerate the tube feeds. If she does ok, a J-tube may be next. Those are the possibilities as of now...they still have lots of tests to run and decisions to make, so keep praying for wisdom and direction for her doctors. I'll update as they know more.

 

Allie

 


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 1/11/2011 2:18 PM (GMT -6)   
Allie, thanks for the update on Lizzie.

My temporary loop ileostomy is 1/2 to 1 inch long and 7/8 inch around. It sticks out wonderfully, like a water spout. I love it and hate to have another surgery in May to have this one closed and an end ileo made...BUT,

I will have a total colectomy, have the temporary loop ileo closed, hernia repaired, an end ileo, possibly on the left side because of the parastomal hernia on the right, and a tummy tuck so I can have the end ileo in a better spot. I can't wear my normal clothes because my stoma is a little high because of my belly fat and excess skin from having babies. YUCK
I will keep my non-diseased rectum!

If you want to see pics of my stoma, just email me and I will send them to you. We have taken lots of pics to keep track of how big the parastomal hernia is getting. It is now the size of a small orange. But my doctor said it is SMALL...I was like, woe, I don't want it to get bigger than it is right now. EWWWW It looks very big to me and ugly and I feel self conscious about it....

Hodaya, where are you? How is your stoma doing? What about your output? I have found that if my output is too thick, that several ounces of pickle juice will thin it right down. YUMMY! Luckily, I love pickle juice.

Where is everybody?
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 1/11/2011 7:30 PM (GMT -6)   
Allie,

What a suprise!
I also have the dream that one day I travel to Russia, especially Siberia. I find the northern countries much more attractive than the south, and the climate is better for me there, too.
At school, I learnt a little bit Russian, and I would have had the chance to visit Russia through a student's exchange. But i was already too sick. I feel the same way, as if the outer world does not touch your own little universe which is a battle field. You do not have eyes and ears for the everyday life and the things going on in the big world when you have to battle your Fight minute by minute, second by second.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/11/2011 10:32 PM (GMT -6)   
Allie and Peltz,

I felt just the same as you guys do those 13 months my small intestine and large intestine and rectum were basically scarred shut and I could not eat or defecate AND all these docs I were seeing "didn't get it." On no food, I don't really know how I survived. The turning point was a CT Entercolysis image test at Mayo clinic where it proved my small intestine was scarred mostly shut, but even they did not take action. If not for the doc at Lahey who did what he needed to do, I would not have lived. Scares me that 10 other docs were going to let me die rather than take action. But, when this worked, then suddenly I connected again with the outer world. I think that desolation of being so damaged and nobody "getting it" definitely had its impact on me that will last a lifetime; I am not the same person I was before going through all that. So I applaud both of you for dealing with things for so long. Allie, your ordeal is almost over as I feel that ileo will work for you. Peltz, I really feel for you, and I pray you can find the help you need to lead as good a life as you can. You are both so young, as is Lizzie, it breaks my heart. I'm about twice your ages.

I'd be glad to show you Russia pics assuming I stay OK and get to go in August. Thanks for well wishes. I will make the journey for us, and who knows, you may both end up getting there some day not so far away.

Allie, my end ileo stoma is a bit oval and is 7/8 inch around and sticks out about a half inch. There was a note in the op report that I have narrow intestines compared to the general population of people my height and weight so the stoma had to be done so that not too big of a piece was cut out of my abdomen to bring the stoma through, yet a big enough piece so I would not get a stricture in back of the stoma. Add that issue to the fact that the end of my small intestine was scarred densely to my rectum, and my ileo surgeon had his work cut out for him. I really lucked out as only 2 months after my surgery he had to stop doing long intense surgeries because of his back. He was 72 and still bright as a button, but his own body was starting to act up.

The only issue I have had so far is that above the stoma I feel a real muscle heaviness that increases through the day. I don't have a peristomal hernia and so far all is working fine, but its not a normal feeling. Tracy has it too (in addition to her peristomal hernia) so maybe it is normal to feell heaviness even without a hernia??? after all abdomens weren't meant to have intestine hanging out of them.

Oh, Allie, also ask your surgeon if he puts the stoma right through the rectus abdominus muscle. If this is done, it minimizes your chance of stomal prolapse or peristomal hernia. I have so far had no retraction and it's going on 3 and a half years for me. I have gained weight so the stoma is not a prominent as it used to be but I have no issue with the appliance. I am however going to try and lose some weight because if you gain too much, it can affect the stoma's function. BUT I was down to 99 as I could not eat a year before getting my stoma. My normal weight was 125 and now I'm at 132. Gotta knock off about 7 pounds if I can. My metabolism slowed that year I could not eat so I would stay alive, then when I started eating, the weight came on fast because I was eating with a slowed metabolism. My metabolism may never be what it was so I have to watch it.

Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 1/12/2011 3:39 PM (GMT -6)   

Been awhile since I have been on here.  I have checked in a few times and tried to keep up some.  I do keep in touch with Lizzie just about everyday through texting.  She is really having a tough time.  Her system is so slow and having bladder issues. 

I had a hysterectomy on 11/8/10 and have had numerous complications.  I have been hospitalized 4 times since then for partial bowel obstructions, ileus, and gastroparesis.  I also just got over pneumonia so its not been fun.  My biggest issue right now is gastroparesis with small bowel inertia.  My system especially by small intestine is just so slow.  I get sick easy and stay on zofran around the clock.  It just feels terrible to have to take Miralax to try to move things and then sometimes it doesn't work then I get a partial obstruction or basically an ileus. Things just shut down and I end up in the hospital.  My life was miserable before my total colectomy but now things aren't so great either with the same thing happening with my small bowel.

Just wondering if things will ever be normal. shakehead

Jen


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/12/2011 4:23 PM (GMT -6)   
Jen,

Sooooo sorry to hear of all of this. Why did they do a hysterectomy? Was it done open or lap?

Are they sure that this is slow small intestine and not actual blockages due to adhesions?

Try to get a CT Enterography if you can. This is a new type of CT scan which can detect narrowings in the small intestine. Best to drink plain water contrast for this so that the small bowel really expands. If there are narrowings, this translates into adhesions on the outside of the small intestine which are squeezing it in. When I read awhile back of your then upcoming hysterectomy I wondered why you were having it and also thought of adhesions as a result. Not pretending to be the expert here, but due to my vast experience with sbo's from adhesions, I've learned a few things (I never wanted to know).

Good luck and ask your doc about the CT Enterography.

Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 1/13/2011 9:00 AM (GMT -6)   
Rosemary,

They did the hysterectomy open due to my numerous abdominal surgeries. They were afraid of all the scar tissue. So when they did the surgery then found a lot of adhesions. I had to be given blood during the surgery due to every time they cut through an adhesion it just oozed blood. The uterus ended up being attached at the bottom with thick adhesions so the surgery took awhile. I had the surgery due to a failed ablation. I was bleeding non-stop and having chronic pelvic pain.

I have had several small intestine tests the latest in December during my stay for an ileus. They said it showed the same as the last time they tested. The small intestine they said was fine other than major slow transit. But of course I was hospitalized on 11/21/10 for a partial small bowel obstruction so I don't know. Things were moving great for about 2 weeks then this past week things just slowed down to where I am on Miralax. I go to my GI doc on the 21st so I will ask him about that CT test.

What can they do if it is adhesions and narrowing? My OBGYN who did my latest surgery said that I should not have any more abdominal surgeries due to all the adhesions and she said that I bleed very easily shakehead

So frustrating.
Jen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/13/2011 9:50 AM (GMT -6)   
Hi Jen,

WOW! What a terrible time you have had and bad current situation. Likely all the bleeding from the adhesions being cut during surgery added to the formation of new adhesions. Did they use any adhesion barrier? Some docs don't believe in it but so far Seprafilm worked for me. Your GYN is right, you should not have any more abdominal surgery because surgery just creates more adhesions. Yet on the other hand, if you have repeated small bowel obstructions FROM adhesions, the question becomes, is this safe to live this way? Is it ileus or small bowel obsructions from adhesions? A real double edge sword.

The CT Enterography, if it showed narrowings in the small bowel, this would mean adhesions on the outside of the small bowel which narrow it in. Then at times your small intestine kinks off thus necessitating the nothing by mouth, IV's and possible NG tubes to decompress the small bowel and it unkinks itself.

In your case, I would say that it might be worthwhile to at least know if you have these narrowings just for info.

From what I went through, I was told it is not a good idea to take a laxative if you have these narrowings as this can distend the bowel and actually precipitate an episode of small bowel obstruction. Yet if it is ileus, it says right on the Miralax container, don't take if you have ileus or small bowel obstruction. Yet if you have slow small bowel motility and can't go without the Miralax, I can see why they have you take it. Your situation is very tricky. These are just some ideas to ask your docs about. I sure hope they are knowledgeable and caring.

I tried to find an expert in adhesion removal for Lizzie by emailing some National Foundations which deal with intestinal adhesions. I got about 4 email addresses. I just asked who specialized in adhesion take downs. All I got back were messages like "We are just clearing house for information about adhesions, we don't give medical advice, ask your doctor." BIG HELP THAT WAS! Auuugh!

Anyway, I sure feel for you and wish I could help beyond giving you more questions to ask your doc. What are you able to eat? Bland foods in small amounts? Maybe for now just find out what works.

During my time when my small intestine was closed in with severe adhesions and my colon and rectum were scarred almost shut, I would have to take about a half gallon of Colyte Bowel prep every week and literally melt stool down to get it through my rectal and lower colon narrowings. I would then have an episode of ileus 2 days after having done the Colyte treatment. I do not know if this was caused by having done the COlyte then starting to eat the next day or what, but it always happened that way. Then I noticed on the side of the bottle it said, "Do not take if you have small bowel obstruction or ileus." But what else was I to do, I couldn't let my colon rupture. I was in a no-win situation. THat is why I hurried as much as I could to find help and got the adhesion lysis and the ileostomy. So keep a food log and a diary of when these ileus or sbo attacks occur in relation to when you have taken the Miralax.

Keep me posted. I wish you all the best at some sort of solution here. This sounds rough. Rosemary

evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 1/13/2011 1:44 PM (GMT -6)   
Jen, You and I sound so familiar. I am going through testing right now to see what is going on in my small bowel. I hear ya about just wanting to feel good and be normal. I have pain and nausea every day. I am still working but I do not know how much longer I can continue to do so. I take the miralax everyday because I have slowed down so much and I worry constantly about it. I am just not knowing what to do anymore. It seems like I am never going to feel well. Are you still working? I feel like I am such a burden to my kids and husband because I am sick all the time. Even though my husband is very supportive, I hate complaining all the time about how I am feeling. I need to run away!!

Rosemary, Are you home yet? Or still at sea? Hope you have been feeling well and having a great time!

    * Marisa

    * 1999-Appendectomy with Cecopexy

    * 2001-Ruptured ovarian cyst

    * 2004- Emergency hysterectomy

    * Lifetime Chronic Constipation

    * 6-1-09 Total open colectomy with illiorectal anastomosis


* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 1/13/2011 1:50 PM (GMT -6)   
Wow, maybe an ileostomy is the answer. Maybe there is inertia in the rectum??? Just a thought that I had.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/13/2011 5:50 PM (GMT -6)   
Hi Marisa,

Yep, I'm home as of Jan. 5. Cruise to Africa, and south america was super. Now have been snowed in every other day since getting home. My luggage I shipped home accidentally went to California before coming to me. Lucky luggage :-)

Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 1/13/2011 7:15 PM (GMT -6)   
Marisa I have been out of work since my hysterectomy surgery on 11/8/10. I was hospitalized once for a partial obstruction, then once for an ileus, and then I got a stomach virus which dehydrated me and kicked up my gastroparesis so they put me in the hospital again. I was released on Christmas Eve and developed pneumonia that evening....lol...it never ends with me. I am cleared to go back on February 1st. I work from home two days a week and three days a week I make visits to inspect child care centers. My supervisor is very understanding and lets me stay at home and not make visits when I am not feeling well. I know what you mean about feeling like a burden. I am sick all the time. My husband is very understanding but I know he gets tired of me being sick. Everyday I am in some sort of pain, and I get nauseus a lot. I live on zofran. I have reglan for my gastroparesis, but I hate the way its makes me feel. Keep my posted on what they find out with your small intestine. I have had several tests and all it ever shows it marked slow transit in the small intestine and gastroparesis. I am going to take Rosemary's advice and see about the CT Ent. test.

Rosemary it is a difficult thing with the Miralax. I take it then within an hour or so I have just liquid stool then I may not use the bathroom for another 12 hours which without a colon is a long time. When things are moving great, and I feel good I go to the bathroom at least 4-6 times a day. I just can't figure out what to do and what triggers this. I hope my GI has some answers. As far as eating I try to eat a variety of things but usually stick to bland foods. Mainly a low residue diet.

I'm just tired and wish for normalcy one day.
Jen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/13/2011 7:26 PM (GMT -6)   
Jen,

Yeah, get the CT Enterography. Do ask if you can just drink water for contrast because that distends the small bowel to it's max. That way if any narrowings, they would surely show. I think I had to drink about a quart of water in 40 minutes. So go hungry and thirsty because you will fill fast. Then they just do IV iodine contrast if you have no issues with iodine. Then they just run you through the CT scanner and you're out of there. It does not actually visualize adhesions per se, but the radiologists interpret the narrowings as areas where scar tissue squeezes in the small intestine from the outside. Absence of this would likely mean your issue is motility. Wishing you well.

Interesting about the action of the Miralax. I bet those good days really feel good. With normal transit and my ileo, and having had it for 3 years, basically every time I eat I put out about 1/3rd of a bag. Then at other times there is usually something coming out into the bag in lesser amounts.

Before my body adapted, my small bowel transit time was about 15 minutes and I would see what I'd just eaten, it was so amazing. Now I think I'm seeing the meal digested that I last ate. Unless I'm empty, then what I just ate whales through me and I see that. So even with "normal" transit, it does vary. Hoping for more good days for you. Glad your boss is understanding. That takes a load off your mind.

Rosemary

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 1/14/2011 10:20 PM (GMT -6)   
Just stopped by since it's been so long since I've been here. Thanks to those of you who are keeping this thread alive because it's so nice to come to, if only once in awhile, and see friendly "faces" lol

Jen and Marisa, I'm so sorry to hear you are both having so many issues still. Jen, I live on Miralax too. If I don't take it twice a day I feel terrible. I'm so fortunate that I actually feel well most of the time and even though I have to run to the bathroom many times a day it's so much better than feeling horrible all the time. I understand about running to the bathroom after taking it....do you take it the same time every day? Have you tried taking it regularly twice a day? I actually mix a little metamucil with it to give it a better flavor and to make my stools not completely liquidy, although they are pretty loose. Marisa, I thought you were doing better. I'm so sorry to hear that you're still having so many issues.

Miss you all:)

Janie

evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 1/15/2011 4:29 PM (GMT -6)   
Janie, I was doing pretty good up until about six months ago. And since then I have been having terrible pain and the bms have slowed dramatically. I have just been putting up with it until know because I HATE all the tests they put you through to see what is going on. But, I just cant take it anymore. It got so bad on day at work that I was just bawling in the middle of a patient. Talk about embarrassing. But I was hurting so bad. I just, like everyone else, want to be a normal pooping person!!

I am having more testing done next week. Yeah for me!! I think I can put up with the ones they are having me do for now. I dont go back to the gi doctor until Feb 14. I just want answers and a cure. That is not so much to ask for is it??

Rosemary, I know what you mean about the snow. We have had a very long, cold, snowy winter. Some really bad storms. But I live in Idaho so that is expected.

Anyhow, hope you all are having a great weekend and staying warm.

    * Marisa

    * 1999-Appendectomy with Cecopexy

    * 2001-Ruptured ovarian cyst

    * 2004- Emergency hysterectomy

    * Lifetime Chronic Constipation

    * 6-1-09 Total open colectomy with illiorectal anastomosis


* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/16/2011 6:31 AM (GMT -6)   
hi my loves! nice to see everyone gathered again.

my appt with the CC surgeon was disappointing. first of all, he was so not nice as he used to be. i told him that i'm 6 mons with my stoma now and have made up my mind i want to keep it for life. i told him that all the ppl i know who have loop ileos and a j pouch have bms, some once a week, some every day, some several times a day - but anyway, the point is that when they have the urge, they can expel it. i explained to him that the problem with me is that i can't and nothing can be expeled on it's own even if i wait 6 mons. the pressure is horrible and causes me lots of pain in my whole pelvic and lower abd, and the pain wakes me up at night. so i asked him what about taking out the rectum and doing an end ileo.

so he said that removing the rectum is a huge surgery, as huge as a colectomy, but even worse, cause it involves lots of complications, such as possible nerve damage, since there are so many delicate nerves in our pelvic, and as a result - horrible chronic pain. also, my Fallopian tubes can be shut from scare tissue and thus will have hard time conceiving a child. he said you can do it, but i suggest you consider it very heavily. so i don't know... honestly, the thought of a nerve damage really worries me. i know 2 women who were unfortunate and have it as a result of a pelvic op and their lives are ruined. they live on the strongest nacotics exist and it's for life. that REALLY scares me.

but i hate it that i still have to do enemas, and i hate it even more that the enemas are not working!!!

i asked what about doing an end ileo and keeping the rectum. he said it's not a problem doing that and it's a small procedure, but it wouldn't solve the rectal pressure problem. so anyway he doesn't recommend it, at least not at this point, esp since i still manage with convexity and adapt rings and there are no skin issues.

one thing he said that surprised me was that he can't find the lower hole of my loop stoma. he thinks it has closed shut, so now my stoma functions as an end ileo... i was shoked and besides... only a week prior to seeing him i changed my wafer and i saw the mucos coming out from that nonactive hole, so is it possible for it to be shut within a week..???? so weird.

about my mysterious recto-vaginal fistula, it first of all sounds very strange to him for it to be created after an ileo op. he said it's more likely to happen after an op in the pelvic and not such a procedure as just creating a stoma, so it makes no sense to him. but in any case, my fistula isn't very symptomatic, i mean it's not causing me much trouble, probably b/c i have a stoma. i do have a huge amount of mucos coming out of my vagina 2-3 times a week, but it's not that horrible. i just change my undies liner and i'm ok. so maybe better leave it as it is. i said i'm possitive i do have one, also b/c of the fact that when i get my period, blood comes out of my rectum. blood never comes out of my rectum, only during the first 2 days of my period, when i have the most massive bleeding. he said that even if there's a fistula, it's better leaving it as it is, since it's not causing much trouble and it's not dangerous leaving it as it is.

the MOST hard part of that appt was when he stuck his finger into my stoma...... OMG!!!!!!! i thought i was going to faint!!!!! it was HORRIBLE and caused my stoma to sink even more... i don't like them doing that, and if i ever go to see a dr again, i'm gonna try to avoid that part as best i can!!!!! i'll ask if it's really necessary, cuz if not, i'd rather them not doing it :((((

about my slow motility, there's no surgical solution he can offer me - that's all he said.

i asked what are the chances i have narrowings/scare tissue. he said that if i had narrowings, prune/pear juice wouldn't have helped and i would get obstructions often. so the chances i do are very low.

soooo... i don't know, have no idea what to do about things.. i'm just not gonna do anything at this point i guess.

so Allie, i know how badly you want to rid of this nonfunctional rectum, i want it bad too, but it's just so scary to think about nerve damage... so frustrating.

Rosemary, i don't feel any heaviness neer the stoma or anywhere in my abd. i don't think this heaviness feeling is normal.

Jen and Marisa, so sorry about your ongoing issues. i also have a slow small intestine, but i manage ok with prune and pear juice. i hope your drs have some answers for you both.

Tracy, i used to drink pickles juice every evening to help with my output. i LOVE pickles juice too, but it caused me severe water retention, so i had to quit and had to switch to prune juice instead. the pickles juice in the right amount (half a glass) was working much better than prune juice, but i was so swollen and starting developing edema YUCK! so please be careful with that, all that salt is not good for you.

i'm glad you're doing well, Tracy, but you do actually have a huge surgery a head of you - removing the colon + repairing the hernia. but it is best to remove the colon, no use to keep it in. i just hope all goes well.

Janie, glad you're still doing ok :))

Sarah, thanks again so much! i checked it out and we do have this company's products here, so im gonna try it. i hope it helps me too with the motility.

i feel so sad for Lizzy for all the ongoing complications she has. she's always in my prayers!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/16/2011 12:03 PM (GMT -6)   
Hi Hodaya,

This doc is actually right on target. THe low pelvic ops are indeed very dangerous to nerves. The fact that my original 2006 surgeon resected my sigmoid so low (taking the top of the rectum without my permission) did cause me nerve damage which then no longer lets my rectum widen for defecation and angle for continence as it could PRIOR To his unneeded surgery. (In the beginning, prior to the unneeded 2006 surgery, I had NO anismus). So this LOW pelvic op did cause nerve damage. Also part of the nerve damage is that the nerve to my ***oris is irreparably damaged so that "area" is non-responsive to sexual stimulation. SO FAR, I do not have nerve pain. BUT this doc is right on target.

I would make another appointment with him and ask him if the accumulated stuff in your rectum really is poop or if it is just mucous tinged brown from old blood. The unused rectum becomes friable or sensitive and there is a bit of old blood in my rectal mucous too. If the other end of your stoma has closed, then it is unlikely stool has gone to your rectum. IT MAY just be brown colored mucous, especially if period blood goes from vagina to rectum. He MAY just be able to periodically suction out this mucous with a thin sigmoidoscope put just in a little way. I have my mucous suctioned out every 4 months or so and it provides months of relief. My current surgeon said they do this all the time for people with ostomies. Even those with no other pelvic injuries or scarring, after awhile their rectums shrink in and many can not expel the mucous on your own.

Just tell this doc that after you had time to think it over, you realize what he said made sense, but that what you NEED is relief from the rectal pressure. He MAY be able to do this for you in the way I've outlined above. THis guy may really become your medical partner in feeling better. I do realize the let down you had when hearing he could not help you, but he is not knife happy at least, and is being honest with you. He may just not have thought of the suction thing. You would of course do this rectal suctioning when NOT having your period.

Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/16/2011 12:19 PM (GMT -6)   
Rosemary,

i asked about the suctioning and they don't do it. i also asked my surgoen at the time and he did a face like "what the heck are you talking about.." no one is cooporative about this, they say there is no such thing. so i just have to go through this alone with enemas that don't work.

i have an appt to a new gastro doc, but its on March 17th :((( so far away.. but maybe he knows of someone that can help me with it.

the surgoen i saw does think that all i have in my rectum is just mucous and not poop. you're right about the unused rectum becomes friable and that causes the tissue to bleed easily. anyway, whether it's also poop or just mucous, i want it out as should... :( i can't do enemas once a week and be bound to the b/r all that day... i can't spend my time in the b/r too much, that's why i had all my surgeries, so i can finally get out of there.

anyway, i can't find someone to help me with suctioning.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/16/2011 1:38 PM (GMT -6)   
Hi Hodaya,

Hang in there about the suctionings. My original ileo doc who did the ileo AND his new associate that I now see due to the first ileo surgeon's retirement said that these suctionings are extremely common AND are NEEDED by most ostomates over time because no matter what the original issue was, because as the rectum is not used, it shrinks in diameter and TYPICALLY patients cannot get the mucous out. This is a no-brainer. SOOOOO, all you need to do is to connect with the right doc. Tell the GI in March that you know someone in the States who has this done at Lahey Clinic in Burlington, MA about 3 or 4 times per year. It takes all of 5 minutes and buys me about 4 months of relief AND I have my WHOLE colon to make mucous, not just my rectum. LUCKY for me I am not a big mucous producer as people go, but having my whole colon, there is certainly enough there to make me feel uncomfortable and actually gives me pelvic cramps when it builds up. My doc says even just a bit of mucous can feel like a ton because the stretch receptors in the pelvic floor perceive stimulation at anything in the rectum.

They just grease up a narrow sigmoidoscope, grease me up, stick their finger in my rectum gently, then put the scope in about 6 inches, and we can see the mucous on the TV monitor, and they squirt in a bit of air and water, and suck out the mucous. Like a tiny vacuum cleaner. In 5 minutes it's done. Just a tiny bit of cramping from the gas they pump in but then they suck it out. So I'm good to go. Buys me TONS of relief. You just have not connected with the right person. This may be the source of your discomfort and can be easily solved.

Do keep the faith and just keep on doctor shopping. Your request for comfort at this point is so minimal I am betting SOME doc arises to the occasion and helps you out. Just remind them that this is periodic income for them. tell them if your insurance won't pay, you will. I would think that would get them if nothing would. Only resort to this last statement if you totally have to.

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/16/2011 1:48 PM (GMT -6)   
Hodaya, Just an afterthought. Being as I had such a bad experience as a US citizen and then having travelled the world since. I just think it is the US medical system that is messed up. BUT by your bio, it sure looks as if you were not tested thoroughly enough before they even did your first procedure. It sounds like if you had had a TOTAL work-up, they would have found that you had pelvic floor/rectal issues IN ADDITION to the slow colon motility and would have gone direct to an ileostomy (or at least suggested it to you and explained why.)

Sounds like other parts of the world are as confused about this whole pooping issue as are some docs in the States. This is just an observation. I know what you mean about just wanting pooping (Of mucous or anything) to be a non-issue in your life. Hang in, I think you are close. If the convex appliances are doing the trick, then things aren't perfect, but you are functioning. Also, I do remember you saying you were hospitalized once I think for "obstruction" since your ileo. If it was close to surgery it may just have been post-op ileus. So your surgeon may be right in that you aren't obstructing if the prune juice and all you drink helps.

I take it he did not offer to put your mind at ease by doing the CT Enterography scan????? This did bring me some piece of mind. So much depends on the insurance we have and the arrangements docs have with the insurance company. He may have wanted to buy you peace of mind but his hands may have been tied. I have learned so much of medicine (I guess world wide) is beyond the scope of the patient. Disheartening to say the least and am not minimizing your situation, but there are other factors we as patients are not aware of.

So hang in. Rosemary

P.S. My rectum is scarred at a right angle and I have the scarred non-muscular length of colon above my rectum all result of the unneeded 2006 surgery. BUT who can figure this one, I made several puddles of mucous this morning by sqatting in my bathtub, leaning to the left and pulling my left check of my butt to the left. I just relaxed and out came so much mucous I really don't need an enema and can head on out. Am still going for a March suctioning, but who in the world can figure. I think because my colon and rectum were healthy, they are still trying to work. Pity, but works for me. The body is soooo complex.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 1/16/2011 2:54 PM (GMT -6)   
thanks Rosemary. you're so comforting and reassuring. i hope i can find someone to help me with suction, cuz i can't deal with this alone like this. thank you for explaining how it is done, it was interesting and good to know.

my drs did check thoroughly and did all the tests exist to make sure my rectum functions right after the colectomy. i did a preanal US of the pelvic and a defecography. the preanal US did show my rectum couldn't expell the gello stuff, but the defecography was normal.. go figure. but i think what also my drs and i didn't realize is that my small intestine is slow. we don't have the motility test for the small intestine in israel. the CC dr told me once that this test is not so rliable and while he was in cleveland they did this test to many women and at some it showed normal motility and after the colectomy it turned out the small intestine is slow. in others, while the test showed there is a motility prob with the smalls, post colectomy things worked wonderfully.. so he said he doesn't trust that test anyway. with me it's unfortunately now known that my smalls are slow.

yes, my obstructions post op were ileuses. but now it's a whole different story. in the first 1-2 mons post ileo op my motility was better than now (just like after every intestinal surgery i had) and then after those 1-2 mons things slow down. while still at the hospital (while the motility was to my satisfaction) my surgeon said my small intestine is slow. now, 6 mons post ileo op, it has gotten really slow. if i quit taking my pear and prune juices, i'll have obstructions b/c of slow motility of my small intetine. it won't be obstuctions b/c of narrowings and adhesions, but a pseudo obstuction. but i guess i should just be happy there are things that are helping me still with my motility and hope they keep working always.

no, he didn't offer the CT Enterography scan, cuz he can tell by my story that the juices are helping me, that i can't have a major narrowing/ashesions issue. i trust he's right, so i just stick to the juices and happy they're helping.

about the stoma, yeah things are managable still. he said only if things get really complicated with my stoma and i need to have it repaired surgically, then better yet do the end ileo then (if anything happens), but of course not removing the rectum.

how interesting all that mucous came out like that all of a sudden. i guess me talking about it so much lately affected you in a way..? lol

yep, drs all over the world are very confused about the pooping business.. one of the gastro docs from the team of drs who reviewed my case for like 2 1/2 yrs told me once that the gutts are the organs that are most hard to understand and they havn't figured out much yet. but he said the most difficult part to understand is the colon, more than the smalls and stomach.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 1/16/2011 6:46 PM (GMT -6)   
Hi Hodaya,

Oh, I see. Very interesting. I understand now. Your issues so different than mine. You gave a good explanation. That is interesting that the small bowel motility test is not reliable. So many of these tests are well intended but the results/interpretations can vary so much. One doc told me that the gut system is harder to understand than the brain. He called the guts our "second brain." He says guts have more nerve endings than the human brain.

Fascinating that your perineal US was not normal yet your defecogram was. So yeah, I can see why they tried to make your rectum work. Well intended they were. I understand the pseudo obstruction now that you explain it. Slow motility rather than adhesions, narrowings.

Yeah, I would say as long as those juices are helping, keep using what works.

You will find someone to do the rectal mucous suctioning as that is the least complex issue you have going. Somebody should find this easy to do.

All I can say is we all ought to go on a talk show if they ever have a documentary about the human gut system. Between all of us and our varying issues, we could educate a lot of patients and docs too. After all we are the experts (in our respective issues.)

Thanks for clarifying this for me. Hope you find suction soon. Suction is VERY RELIEVING>>>>YEAH!

Yeah, I do love it when mucous just comes out of my butt on its own. Yeah, maybe it was the "power of suggestion." :-)

Rosemary

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 1/16/2011 8:10 PM (GMT -6)   
Hoddaya,

Just a quick note: who can say that you don't have both - slow small bowel motility aggravated by adhesions. And if you make you stools somewhat smoother by taking prune juice this would help to pass the loops with adhesions as well.
I don't think your doc is right saying an enterography would not help. It may be so, but when dysmotility is significant you can watch uncoordinated or very few contractions during enteroclysis. There is a difference between enterography and enteroclysis. Enteroclysis means that you get a nasal tube which goes into the duodenum. Then, contrast medium is given through the tube, and by simultaneous watching of the propagation of the contrast medium through the loops you can get an impression of the motility.
It's not a perfect study for motility which would be small bowel manometry but it is much more precise than an enterography with which you drink some amount of contrast medium. Then after the contast medium has passed the small bowel it is completely imaged. There is also the variant that you drink the medium and one follows the populsion of the contrast intermittently, but not throughout the entire lenght. Unfortunately, there are not many docs who refer a patient for this test any more since mostly, it involves much more radiation exposure than MR enterography. BUt a CT enteroclysis is already better than a conventional enteroclysis in terms of radiation exposure. Most times, the test was orderd for diagnosis of chron's and ahesions/strictures, but among all the radiological investigations the enteroclysis is still the best and only option to evaluate motility in real-time.

Post Edited (pelztier86) : 1/16/2011 9:44:08 PM (GMT-7)

New Topic Locked Topic Printable Version
249 posts in this thread.
Viewing Page :
 1  2  3  4  5  6  7  8  9  10 
Forum Information
Currently it is Thursday, June 21, 2018 4:56 AM (GMT -6)
There are a total of 2,974,055 posts in 326,246 threads.
View Active Threads


Who's Online
This forum has 161226 registered members. Please welcome our newest member, echevarriacarisa.
302 Guest(s), 5 Registered Member(s) are currently online.  Details
fawad malik, Uniform Charlie, Pratoman, Saipan Paradise, Kathy77