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Total Colectomy Part 34

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Posted 5/17/2010 1:54 AM (GMT 0)
Hi Marisa,

Yeah 2 cruises planned. July and August NY to Greenland, Iceland, Norway, England and home.

Then Oct. To London, ROme, Cruise down west coast of Africa to Cape Town then Back across to Rio and up the east coast of S. America to home. Oct-Jan.

I SURE hope I stay OK. I just had 2 horrible days of severe ileostomy diarrhea. I did pig out on chocolate the night before each so I am hoping it was just that. Thank god for imodium that's all I can say. I cannot even imagine having my small intestine connected to my rectum instead of a bag. I would have had to live on the toilet for 48 hours. (Course I had no transit issues to begin with so transit even my colon was a non-issue. So I guess chocolate speeds up my transit WAY too much.) My doc actually did a "Stool Culture" That was me bringing a jar of what looked like pee into the lab. I said This is ileostomy diarrhea. The lab tech looked like she was going to pass out :-) She said, Good Luck, you should be hearing about your culture in a few days. She totally got the issue and was sympathetic.

So am hoping it was just the chocolate. If nothing shows in the culture, I was likely just down to bile juice and hence the yellowish-green clear liquid I had for ileostomy output.

Hope your boating was fun.

Rosemary PS anyone hear from Lizzie?
Posted 5/17/2010 2:01 AM (GMT 0)
I had read that about Elvis too. I felt so sorry for him. All that fame and money and he could not get help or ask for help that could have saved his life. SO sad. Rosemary
Posted 5/17/2010 4:14 AM (GMT 0)
Allie:  I was just reading through some older post and saw where you were from Texas - so am I.  Did you have your total colectomy in Texas.  I did.  I had mine done in baylor - by Dr. Robert Jacobson - he is wonderful.  I had mine done Jan 06; however withint the last few months, things have slowed down.  I have gone from three bms a day to one (which is formed) and at times hard to pass.  I now have the bloating and all which I did not have until recently.  He says whatever caused the problem prior to my surgery has is attacking my small intestine.  I have tried medications, ets., but have another appointment on 28 May for more tests/consultation.  Things were wonderful for the first 3 1/2 years after surgery - but I have been kinda down lately.  Wondering what do I need to do now.  Are you on FB?

Posted 5/17/2010 5:34 AM (GMT 0)

Hodaya- Yes! So glad we're facebook buddies now! It is fun to put a face with a name.

 

Sorry that carrot juice makes you so sick. Dates (the fruit, not the social outing) seem to help me a little, and beets definitely help things move along. I cut a couple of beets into chunks and steam them until they are soft. Steamed spinach also helps. I don't eat any grains, dairy, soy, or red meat. Have you tried cutting any of those out of your diet? I'm sure that you've tried- just checking.

 

I completely understand your fears about having an ostomy. An ostomy seems so final, so end-of-the-road. If that didn't work...well, I don't know what I would do! I also know exactly what you mean about trying to study. I have to study so much more now. I used to retain information with greater ease, and I used to be able to remember someone's name when first meeting them without any problem.

 

Marisa- Thanks for writing! I'm so glad that you're doing well, and I'll definitely be praying that it stays that way! Yea...I don't know what will happen with any dating. I've never dated. Ever. Not even once! I guess I've always been really focused on school, and then trying to deal with my health. My mom has expressed her displeasure with my "antisocial" behavior (funny thing is that she's a nurse...you'd think that she would get it), but I think that's just a product of all of her friends having grandkids. At any rate, it will be awhile! I have to get some kind of control over my life before I even think about bringing a boy into the mix. Good luck with that sunburn! Break out the aloe.

 

Nonna- I did have my total colectomy in Texas. Dr. Clifford Simmang did the surgery at Baylor Grapevine. Dr. Simmang is amazing- absolutely love him. Sweetest man alive and such an artist- I can find the scars, but no one else can. Not even my gastroenterologist!

 

That's really great that you did well for the past 3.5 years. Unfortunately, motility issues tend to persist and spread even after the colon is removed. Have you had the motility in your small intestine tested? If not, they should do a full gastric emptying study to track food as it moves throughout your entire system. Because it is timed, that test will show if and where there are any dysmotilities. A barium small bowel series will show if there are any strictures or obstructions. An anorectal manometry will check the pressures of the anal sphincter (sometimes the new constipation is a result of a rectal dysmotility). A sigmoidoscopy will show if there are any strictures around the anastomosis.

 

What medications have you tried? Have you done a round of Xifaxan? It's an antibiotic that treats SIBO (small intestine bacterial overgrowth), which can really mess with motility. Sometimes that helps, but usually only the first time. The second and third rounds of Xifaxan were nightmares for me. I take a tablet of grapefruit seed extract with each meal, which helps create an alkaline environment, one that bacteria cannot survive in. It doesn't lose its effectiveness like antibiotics can, and it doesn't have any of the side effects that antibiotics do.

 

Ask me anything. I'm happy to help in any way that I can! I am on facebook (http://www.facebook.com/home.php#!/profile.php?id=19212659). If that doesn't work, search for "Allie Anderson" in Southlake, TX. The profile picture is of me and my cap-and-gown-clad brother.

 

Good night, all!

 

Allie

Posted 5/17/2010 2:16 PM (GMT 0)
Hi girls.

Hodaya,
Hope you're feeling better and your pain is gone...wonder what it is? Are you able to go by drinking your juice?

Marisa,
So glad you're finally feeling well!! I guess that gall bladder was causing you all the pain. Sounds like you're finally enjoying life again:) When you say you go ALOT, what do you mean by alot? I take miralax first thing in the morning and I may go 5 or 6 times. If I eat lunch, I have to eat something small because if I don't, I'll start getting rectal pain again. I can snack and go a little after each thing I eat, or eat alot and maybe go, or have the chance of getting the pain. Seems the miralax lasts for just so many hours. Then after dinner (or sometimes before dinner) I drink it again, and after dinner I may go 6-8 times more. It's not a big deal when I'm home, but it's hard to plan eating around going out. When you said you were out on the boat, were you eating and out on the boat? Just wondering if this is normal with the miralax. I totally agree it's so much better than not going, though!

If I really want to go out and eat and not worry about having to run to the bathroom right away, I take a lomotil. That tends to stop the stool from going to the rectum and making me feel uncomfortable. It will last for a few hours, then I go home and drin miralax and go. I only do this a few times a month. Does anyone think taking a lomotil and the miralax will confuse my small intestine? LOL It seems so strange to take stuff to not go, and then take something to go. I'm just wondering if that's good for me.

Allie,
So sorry you're having so many problems at such a young age. I lived with my constipation my entire adult life, but was able to manage by taking huge amounts of laxatives every 4-6 days. It wasn't a great way to live, but it stopped working as well, and I got so tired of feeling miserable that I finally had surgery at the ripe old age of 52! I was lucky that I didn't have alot of pain, just very uncomfortable after a few days of not going.

Rosemary,
So glad you have more cruises planned; seems to do so well while you're cruising. Hope you can get that diarrhea under control. Too bad chocolate doesn't give me D; I'd never have to take metamucil. Chocolate is my greatest love!!

Janie
Posted 5/17/2010 8:09 PM (GMT 0)
Jacoby........ how are you doing??? been a while since we've heard from you.. getting worried! hope you can update us soon. Lizzie sent me a massege saying she's having a rough time, but doing o.k. i hope her breathing is o.k and the surgery fixed the valve. she said it's too hard for her to post here yet, but wanted you all to know she's o.k. Rosemary, i don't think i can ever have too much diarreah, even with an ileostomy, that's just not me.. i believe my smalls are also slow. Marisa, love you so much too honey!!! our special bond is forever!! Nonna, i hope all you're experiencig is just a little setback. i hope your dr can help you, so strange this happens after 3 1/2 yrs... i mean, why now all of a sudden?? Allie, i don't eat grains, dairy, soy, or red meat either, they dont do me good at all. i tried beets and it doesn't do anything for me. i havn't tried steamed spinach or dates.. but aren't dates a little rough - the skin? Janie, the pear juice is barely helping me lately.. ): i don't go much and very bloated. i have the scope on June 3, but can't see my surgeon till mid June, cause he'll be abroad.... so frunstrating. i just hope i don't get an obstruction till mid June is finally here.
Posted 5/17/2010 11:38 PM (GMT 0)
Hi everyone.  I'm getting closer to surgery, and hope that it gets here soon enough.  My tube has not been working and I am cramping terribly.  I've been taking pain pills to help get myself thru it.  I called my local surgeon's office and there have scheduled me for a CT scan a week from tomorrow.  They have to get a referral from my insurance company.. Or, I can wait at the emergency room and have them do one.

 

Last night, I kept my husband and myself up all night.  I am so tired tonite that I want to fall asleep, but am achy and crampy.  I keep telling myself that June 11 is almost here.  At least my surgery was moved up a month.

 

Hodaya, are you thinking about getting an ileostomy, too?  If mine works, I'll be able to tell you all about it.  Right now, I think that I'm getting cold feet, but still want to get it over with.

 

butterfly yeah

Posted 5/18/2010 1:22 AM (GMT 0)
quick update:

Sorry I have not had a chance to read up on everyone.....I did not even use my computer in the hospital. I am doing ok. Short synopsis.......went into surgery, cane out and was doing ok at fist anthen respiratory noticed I was sat 78% om room air and had lungs full of junk, so they put me on 6 L o2 and still was only 82 percent, so i was moved up to Surical intensive care for two days to get my breathing under control. I was on 10 L non-rebreather mask and the next step would have been intubation. Then i was taken off my pump. still in horrible pain and when the pain doctor calulated wha t I was on it was equivilant to 430 mg morphine a day and they had cut me to 1/4 of that, so after a couple days I started going throgh very bad with draws from the pain medication. I am almost off all, but the percoset and it does nothing for me. I walked around a little today and have been in so much pain and nauseated, butt hoping it will pass....trying to stay positive on fb so nobody sats crap to me. I reality its been very har,d I am very depressed (started lexapro) and some other meds the pain people suggested for spasms and such, but i fell no relief. My pouch is working great.....he sais the valve had not attached at all and there i no real reason why, but I have to gain 15 lbs per dr and cant lift over 10 lbs for 3 mo. I will see him again in a month to get the big bag and tube out. I am just hoping since i went in in better health this time things will heal. I looked skeletal yesterday in the mirroe, not even myself, so my goal is to find me and my happiness again. I love you all so much and have missed you all.....feel free to text anytime...616-446-4914'

gotta lay down.

much love,

Lizzie

Posted 5/18/2010 2:03 AM (GMT 0)
Lizzie,

Good job on the post. I can tell the effort this took you. I couldn't really tell what they did, but I take it that they fixed the valve and your inner pouch is working well. BUT wow, what a time you've had. Just rest and take care of you. Remember, it's all about you from now on. Others need to cater to you not you to them. You deserve the best. Thanks for the update. I'll keep praying for you.

Butterfly,

So while you are waiting are you stacking up with effluent inside you that will not come out of your tube? Jeeze Louise! good luck with that! Glad your surgery date for the normal ileo is fast approaching it will be preferable to a leg tube that does not work.

Hodaya, I was feeling sorry for myself with all that self-inflicted diarrhea I had through my ileo by eating too much chocolate. I have not done that since and have been back to normal. I did that out of frustration of this whole unfair thing that should not have happened to me in the first place. Then you reminded me that some people's small intestines don't even have normal transit and that made me count my "blessings".. I just gotta buckle down and figure out what to eat. I have normal transit and should be glad. I just gotta figure out the diet thing. So frustrating, but at least I have the basics to work with. If you have an ileo and you slow down, aside from grape juice, chocolate, and caffeine, I am fresh out of ideas for you. The others with transit issues will be able to help you best, though I will be with you still in spirit all the way. I even had normal transit in my colon and rectum. That's why I'm so p------ off at my original surgeons doing all that (what was later found out to be) unneeded surgery with the misread scan and all. I had great transit everywhere, something not to be taken for granted, even now with my ileo. Thanks for unwittingly being my "voice of reason" I thank you for the perspective. Good luck with your appointments.

Rosemary
Posted 5/18/2010 3:45 AM (GMT 0)
Lori, yep, i think i have no other choice but to have the ileostomy, cause things are not working for me anastomosisly. gosh i hope you can get relief, this tube is not working for you... so great they scheduled you a mon sooner..... imagine staying like this another extra mon..... Lizzie, so wonderful to hear from you! this is a rough road, but you'll make it, focus on getting better and taking care of you! i guess your breathing is o.k. now? i wish i could take away the pain.... i know what you mean about staying positive on FB.... i think i should be careful too about revealing some of the stuff i'm going through, not everybody there can understand, so i'm trying to not say much. rest and get better! love you sweets!! Rosemary, wow it feels so good to know i was able to comfort you dear, considering all your very justified frustration about what's been done to you.... i wish i could do more to help you... i think you're coping so bravely with all of this, i mean, you keep going and staying very active and all... i admire you for that, cause i'm not sure how i would have coped. i think you'll be able to help me a lot with how to use and apply the bag, wafer etc...... gosh i know nothing about all of this yet and will have lots of questions, glad i have you!
Posted 5/18/2010 5:04 AM (GMT 0)
I will talk you through it Hodaya. I emailed Tracy with all the appliance information and it is a lot. I will email it to you too. When you have your ileo surgery though, they will train you before you leave the hospital. They don't just put you out on the street not knowing what to do. I had great stoma nurses then visiting nurse for 2 months after I got home so I got the hang of it. The appliance part isn't that hard. Just tricky to do when your stoma goes active during a change of appliance. I change mine every 4 days.

The night before I have to not eat after 5:00 p.m. but sometimes I cheat then it is tricky. I have sworn off chocolate and feel good about doing that. It's loaded with oxalate anyway which can cause kidney stones in people without colon use so just a good habit to kick anyway.

Rosemary
Posted 5/18/2010 12:01 PM (GMT 0)
thanks Rosemary! i updated my e mail on my profile, i'll be glad to get the information.
Posted 5/18/2010 12:18 PM (GMT 0)
Lizzie - It's so good to hear from you. You have been through so much, dear one.
Amanda - How are you doing? Are you able to pee yet?
Hodaya, Butterfly, Rosemary, Janie, Marisa, Allie and everybody else - praying for you.

Update: Yesterday I had an appointment with Dr. Soffer, head of the motility department at Cedar Sinai. Things went well, I think. The next step is testing, which is tentatively scheduled for June 8th and 9th. The first day will be a breath test (for methane). Did any of you have this test? Also the anorectal manometry, which I know nothing about. The following day . . . sheesh! I forgot the name of it. It's where you eat an egg sandwich and they track the progress of the food for the next four hours. He said that if the entire system was slow there would be no point in removing the colon.

He also wants me to have the surgery (if there is a surgery) at Cedar. Come to think of it, there may not be any colorectal surgeons in my area. But that would be hard on my hubby since it's a three hour drive from home even without traffic jams. But maybe I'm getting ahead of myself, maybe there won't even be a surgery. But I cannot continue to live as I am now. I day per week is filled with nausea and pain.
Oh! The doctor asked why I only went once per week. I explained again to him the negative effects laxatives have on me. Yeah, I'm going to be able to go to work feeling like crap.

On the plus side, he spent all the time he needed to with me. I was surprised that he did a physical exam since the appointment was a consultation. Squeeze my finger has a whole new meaning now. :o

(((hugs)))

val
Posted 5/18/2010 12:33 PM (GMT 0)
Val,

I can't remember the name of the test either, but I had it and failed! I had the test done at Shands in Gainesville, FL. I failed the test; nothing was moving for the longest time (they let me watch a movie!) but when they gave me erthymiasin (sp) it made things move through quickly. Even though I failed, I had a colectomy. I actually had the test because of my horrible acid reflux; since the colectomy the reflux is much better, but I still have trouble pooping! I take miralax twice a day and that's a miracle drug for me since the colectomy. I think my entire system is slow, however my biggest problem is the inability to get the stool out once it's moved to the rectum. Miralax mixed with metamucil gives me the boost I need. Good luck, I'm hoping they'll be able to do something for you. Going to the bathroom once a week is horrible; I lived like that for almost 30 years and it's so uncomfortable. I never heard of the breath test you mentioned!

Rosemary,
You have every right to be upset about your issues considering your surgery wasn't even necessary....all of us on this site totally sympathize with you. I can't imagine having to live my life with an ostomy when it was never needed in the first place. I think I could do it now if the miralax ever stops working, but I KNOW I had colon inertia and pelvic floor problems. I admire you for your wealth of information and your attitude about living!!

Hodaya,
Honey I'm so sorry the miralax didn't work for you. How long were you on it? I know it did nothing for me before surgery, but I was so hoping it would work for you. Hang in there until you have your next appt....love you!

Lizzie,
Just sent you a text sweetie. You're so sweet to keep us updated. I'm sorry we haven't connected to actually "talk" yet, but I'll call again in a few days when you're feeling stronger. Love you, too!!

Hope everyone else has a good day....seems we take this day by day around here:)
Posted 5/18/2010 1:13 PM (GMT 0)
Janie, i took it twice/day for a week and didn't see any change at all. i was actually totally astounded that it didn't work for me, cause i was so sure with no doubt it will... totally surprised!! it's scary too, cause i'm not sure what this means, wether i'll have a relief with the stoma at all..??? val, i hope the test with the egg goes o.k, so you can have the surgery, but Janie had it and even tho she failed, she still had surgery. have you had defecography and colonic transit time test?
Posted 5/18/2010 1:33 PM (GMT 0)
Hi Janie,

Thanks for the compliments about living well with the ileostomy which shouldn't have been needed in the first place due to the unneeded surgery which made the ileo necessary. I did post about the 2 original surgeons on ratemds.com. I told of my experience and that I am not alone, they have multiple other casualties, people they did unneeded surgery on with disastrous results some deaths. They also missed cancer in some with colon cancers. I checked the other night and those posts were gone. They were replaced with Glowing posts of how wonderful those doctors were. I can only imagine that their defense atty tapped into that site and got rid of those posts. I wrote to the ratemds web site manager and told him of this. WHat good is a site rating docs if true warnings to the public are erased? Unreal the lengths that docs and their defense teams won't go to. I bet even though my suit has iron clad evidence, that some how it will be wormed out of. I also sent all these docs suits to an umbrella agency that monitors hospital activity throughout the country. I did this anonymously of course. BUt I bet you 10 to 1 that they just toss these in the waste basket. Here I'm going all out to protect others from going down the road I did and I bet nothing comes of it. I am also being sooooo careful to do all I'm supposed to do, but I sure hope I don't end up with kidney stones or gall stones from no longer having the use of my colon. Besides drinking enough water to produce 2 quarts of urine per day and avoiding oxalates, do you know of any other measures we are supposed to take to avoid kidney stones? It's the colon that absorbs water and electrolytes back into our bodies and produces vitamin K.
Rosemary
Posted 5/18/2010 3:50 PM (GMT 0)
I'm back from my fun (ha!) upper GI xrays on the moveable xray table using the fluoroscope. The test only took around 45ish minutes so I'm assuming that is good for me - less time means my small intestine/stomach is moving properly?? I go back in tomorrow for the isotope eggs AKA the gastric emptying test.

I've been drinking my liquids, took 1/2 a dose of Miralax, and a Zofran. I pray pray pray the barium doesn't make it any worse.

The parentals were happy about my Cleveland visit where they thought surgery wasn't the answer. I was praying it would so it would "fix" the issue and I could move on with life. Argh.

Glad to see that some of you are doing better. I'll keep everyone in my prayers.

Anyone experience a lot of weight gain with colonic inertia?
Posted 5/18/2010 6:43 PM (GMT 0)
Hey Snuggle! You are going through the tests that I'm set for next month. So it's called a gastric emptying test. Thanks for the info! Would you please update us tomorrow so I'll have a better idea of what it is like?

Thanks Janie and Hodaya for keeping my hopes up even if it turns out I have a slow system. Hodaya, I haven't had a defecography yet - in fact, that test was not even mentioned. Is a Sitz Marker test the same or similar to the colonic transit time test because I had that one. All the markers were left behind, mostly in the left side (that's what the doctor said yesterday - would that be the descending colon?).
Posted 5/18/2010 6:49 PM (GMT 0)
Hischildvalda - I'm supposed to bring 2 raw eggs (like they can't supply them???) and they're going to put isotopes in them. All I know is that it is done in the nuclear medicine department. For me that is actually in my x-ray department at my doctor's office.

Sitz marker is the colonic transit time. If you're looking at your x-ray the left side is your ascending colon. The right side is your descending colon.

Looks like you have colonic inertia.

The defacogram is good for testing to see if you have any rectoceles.
Posted 5/18/2010 6:55 PM (GMT 0)
Oh, Lord, at least out at Mayo Clinic they supplied the eggs for the nuclear transit test. It's actually a pretty good tasting breakfast. You can't even taste the nuclear stuff. But Bring your own eggs, oh, lord! :-) Rosemary
Posted 5/18/2010 7:54 PM (GMT 0)
Snuggle?

BYOE??? I've never heard of that!! That is too funny.

Yes, it's called gastric emptying test...thanks Val.

What is so strange to me is that my tests were contradictory..my gastric emptying was extremely slow, but my small bowel follow through was normal. It showed no hiatal hernia, but my endoscopy shows a medium sized hiatal hernia.

My first defecogram before colectomy was normal, after colectomy it showed delayed emptying....too strange.

I think I'm going to go eat some chocolate!
Posted 5/18/2010 8:02 PM (GMT 0)
Wow....two days in a row. I am feeling "ok today....I know they want me off all pain meds eventually, but the percocet just doesnt cut it.......I wish i knew what was going on with everyone.

I must thank you Rosemary for always checkinh in , janie, judy, darlene, Marisa (youe esp), and Allie.....I could not have gotten through what i did without you all. So far the pouch is working. I cant lift over 8 lbs for 6-8 weeks (which i oops did on accident). This whole gaining thing is hard when your not hungry you know......i think hunger takes a while after surgery but i am forcing myself and sweet Allie gave me a suggestion callen Juven that is used when muscles have wasted. THe stoma nurse even said their was a little improper healing of my stoma and i needed proten for it to heal back together. What was nice of my surgeon is all the scar tissue from when they spil my staples open and i had to pack woulds...he cut it out and made it look so much better....

Please all of you know your in my heart...snuggle, Val, Lori, etc I know your all going through things and just know you can always call or text me anytime.....

Love to my family,

Lizzie

Posted 5/18/2010 8:30 PM (GMT 0)
YES Liz, sounds good. Rosemary
Posted 5/18/2010 10:33 PM (GMT 0)
Valda, All my markers were also on the left side of the colon. 15 were still in the ascending colon and the rest were in the transverse colon. This indicates an extremely slow colon. One of the doctors said he could do a sitz marker test on everybody in the hospital and all of the employees and NOT ONE would have a sitz marker test like mine. But, this same doctor also said it was my fault for taking too many laxatives???? So, go figure!

I do think you should insist on a defogram. It is embarassing, but necessary to determine if your pelvic floor is working correctly. Just my opinion though!
Posted 5/18/2010 11:21 PM (GMT 0)
Hi all,
With all the talk of the sitz marker test, I just looked mine up. I had 47 markers in right colon, 43 in Transverse colon, 23 in descending colon and 6 in the rectosigmoid. Elvis and I had something in common, my colon was 8 feet long, too!

Tracy,
Don't let the doctor tell you it's your fault because you took laxatives. I've had doctors tell me that also but I know for a fact I never took laxatives until I just stopped going! My surgeon said that mine was most likely genetic, my colon was so long and twisty. When I had colonoscopies it was very difficult to get as far as they liked.

Lizzie,
Glad you're sounding good!!! Hope all the days ahead just get better and better for you.

Val,
The defogram is a little embarrassing but you most likely won't see those people again. It's really not that bad, and is over pretty quickly!
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