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TOTAL COLECTOMY PART 20

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Posted 12/18/2008 3:56 PM (GMT 0)
Hi Hodaya,

When I had my test, it was hard for me to eat at all. What I meant to say was just eat the way you have been eating, not exactly normally, but the way you have been. Pretty much do and eat the exact way you have. I did that. What I meant by my eating my usual during the test, and i am deeply apologize for not being specific, I was only at the time eating nothing but salads and eggs, and coffee. I could not handle anything solid. that is why they could tell my colon had died that I was only eating salads and eggs, and coffee, things that would go right through you, and being on a ton of laxatives, and I was still full of BM's. Pretty much, I did not have to do anything specail or have a special diet for the test. It was pretty easy. and because they can tell that I needed the surgery from that test, I did not have to have any more test. Maybe you would be lucky and this can be the test that could determine it. It is the easiest test out there and I would recommend it to anyone to have this test done first before doing any other test. I think it is the most accurate test out there and even my doctor says it is the test that is the best to determine this problem. I hope everything goes well, and again I apologize for not being specific, and good luck with everything.
Posted 12/18/2008 4:59 PM (GMT 0)
psygirl,

it is really o.k. you really don't have anything to apologize for. knowing about others experiences is always helpful and i thank you!

i have this constipation prob. for more than 15 years now, and i remember that in the first few years it wasn't as bad as now, i could go on without having a bm for a whole week and it wasn't as painful as it is now. it was inconvenient, but not nearly as painful as it is now. maybe if i had the test then, i would have been able to go through it much easier than now.

anyway, sharing your experiece is great of you and i thank you.
Posted 12/18/2008 8:17 PM (GMT 0)
Tabitha,

i'm so sorry to read about your gallbladder, i hope the test shows it's nothing serious.

looks like your doc. is beggining to take you more seriously. i hope you start getting some answers.

is the miralax starting to kick in yet...?
Posted 12/19/2008 12:44 PM (GMT 0)

To everyone,

Boy, I bumped up my prayer list to include all of you!  You are such brave women in this time of your life.  I am awed and inspired by your courage and your strenght!  I ate normally for the marker test.  (Normal for me as I am able to eat only certain foods).  I am still set to have the surgery during the week of the 5th of Jan but have not heard the specifics yet.  Have any of you had the "stomach emptying test"?  I did in 04' and that is when I found out that my gastric system was not functioning properly at all.  My understanding is that if you have one area not working there, then probably there are other areas not working properly or at all. 

I pray that you have a blessed Christmas and will continue to gleen off of the wisdom and strength of the women in this formum.  Thank you for sharing

Posted 12/19/2008 1:09 PM (GMT 0)
Heather - thanks for your response on the zits marker test!
i never had the stomach emptying test, cause, thankfully, it seams like my stomach and samall intestine are fine, but i know i've read some here mentioned it, so they'll probably pop soon.

Merry Christmas to you all, and happy Hanukkah to me :o)
Posted 12/19/2008 2:58 PM (GMT 0)

Hodaya,

Is it typical for them to check the gallbladder to see if it is the culprit for the colon slowing down?  At first it didn't make much sense to me......but as i have read up on the functions of the gallbladder i can see where he is going by having me tested...wouldnt' it be wonderful if that is what went wrong and all i needed is to have it removed!!!

Has anyone else had to have a HIDA scan??

have a great day.Tabitha

Posted 12/19/2008 4:51 PM (GMT 0)
Hodaya i do hope it gets sorted as soon as. cant quite remember why you may need botox but i remember a lady on TV who had it for an irritable bladder - she had to pee millions of times a day. in any event if the transit study shows slow motility - which i am sure it will - then at least they have looked at all options. have you tried large doses of senna tablets?

yes i googled sepra/adept briefly and it is a substance they put over the wound apparently. i will ask about it when i go in. take care have a lovely christmas.
Posted 12/19/2008 4:59 PM (GMT 0)
oh, I forgot to answer you about the Miralax.  It is helping.  He bumped up the dose so it is doubled for right now and I am having small BM's each morning.........I am happy with that for now.  I still have the nagging, gnawing pain in my left side which makes no sense to me at all but..........at least the gastro Dr. is going to keep looking and testing to help fix the problem!! Tabitha
Posted 12/21/2008 7:24 AM (GMT 0)

hi all,

Tabitha, i don't have much knowledge about the gallbladder, since, thankfully, i don't have a prob. there. anyway, i don't know of a connection between probs. with the gallbladder and a slow colon  eyes   as far as i know, there's no connection, but hey... i'm no doc. did your doc. say anything about a connection? cause i doubt there is, but again, i could be wrong... 

i'm so glad you're having relief with the miralax and that your doc. is working on finding your exact prob.  yeah !!!!!

Karen, the botox is not for my bladder, according to the test i had, there's no brob. there, thank goodness. it's my rectum that isn't behaving. my prob. is that when the stool finally reaches the rectum, it does pass, but veeeeeery veeeeeeery slooooooowly..... redface . it always seams like it is going to stop passing and get stuck, and eventually it doesn't get stuck, but in the last 3 weeks i had 2 occasions when it did get stuck and that was veeeeery frustrating... sad . i'm just worried that i'm developing a prob. there, and if my rectum doesn't function well, then the colectomy may be useless, and i may need a ba......

so how is everybody? 

love ya   tongue

Posted 12/22/2008 2:51 AM (GMT 0)

Well....hi all

The botox hasnt worked. My surgeon wants to to see Dr. William Chey at The University of Michigan. I guess he specializes in motility disorders and is world renown. I am not sure when this will happen, but I do not see my surgeon for 5 weeks.

My life is a mess....I cannot poop ( I do not think i have had a formed BM in almost 6 mo....just liquid), I can barely eat, my uncle is dying of CA, my husbands gradpa is in the ICU after a hemicolectomy for colon CA, my dad fell on the ice and cannot walk (he hurt his knee), we have gotten about 25 inches of snow since Friday:(

Im just stressed in may ways......i do not know what to do!!!

I just paid 1,000 dollars to have painful injections in my rectum and it didnt work....i just cannot do this anymore.

Sorry for the vent

lizzie

Posted 12/22/2008 5:42 AM (GMT 0)
Lizzie, it all sounds so awful. i can't imagine how you must feel. i'm so sorry to hear about all the troubles in your familly. looks like they are attacking in bundles.... what can i say... my heart goes out to you, sweety.
how long does it takes the botox to start working?
Posted 12/22/2008 5:48 PM (GMT 0)

Poor poor Lizzie i am so sorry for you cry

I do hope the dr can help you soon.  Just hang on in there and be kind to yourself - it is hard when there is so many people suffering in a family all at once, i am so sorry... may god be merciful to you and your family at this time.

Posted 12/24/2008 12:48 PM (GMT 0)

Lizzie,

   You have every right to vent and here is a great place! With sooo much going on in your world and alot of it not right; you have the extraordinary double right to vent!!

Hodaya, 

   I finally found out when my surgery will be - 7th of Jan 09.  I am happy to know this prior to the holidays starting so that I won't go nuts!

Everyone,   

 I pray that you have a blessed Christmas and thank you again for your insights.

Posted 12/24/2008 1:55 PM (GMT 0)
good luck Heddie - mine is 8 days after yours
Posted 12/24/2008 7:32 PM (GMT 0)
Heather, i wish you the best of luck with your surgery!! i hope everything goes smooth, no comlications and you'll come out of it as best as possible.
and, yeah, i'm glad they gave you a date already, so you can really have peace of mind and enjoy Christmas.

happy holidays everyone :o) !!!!

G-D bless you.
Posted 12/25/2008 8:44 AM (GMT 0)

Hi Everyone and Merry Christmas/Happy Hanukkah to you:),

I hope you are all feeling well and enjoying this holiday season!  Haven't had a moment to check in with last minute work at school...1st graders are a blast this time of year...the wonder of a child. :) Anyway, Lizzie , so sorry to hear about all you're going through; but, I'm very excited that you were referred to Dr. Chey.  His father is my GI dr.  I live in upstate NY and his father is a dr in Rochester, NY; I travel 3 hours one way to see him. The man is brilliant and constantly tells me about his son, he is very personable.  You can read all kinds of articles/journals that Dr. Chey (son) has written if you Google his name, I don't quite remember, but I think there is a couple thousand.  If anyone can help you, this man can.

Lizzie, I know things are very hard for you right now but please know that so many of us are continuosly praying for you.   I don't know about anybody else, but I know my prayer list has increased immensely due to so many of you at this site; were all here for each other throgh all the ups and downs.

Please say a small prayer for me, my kidney function, which went back to normal after my surgery (7/08), so I stopped taking my kidney meds three weeks ago (on my own)...thought I really didn't need them...but things went all crazy and I needed to go back on meds...very disappointing and to top it off my 19 yr old daughter who went through high school & took advanced classes & college courses, has decided to quit college, move 14 hours away...because "she just needs to see if she can do it," so just when you think things are great...like finally being able to go to the bathroom daily :), life throws you a different curve...I guess I just needed to vent

 I wish you all many blessings, much peace and joy,

Judy

Posted 12/25/2008 10:31 PM (GMT 0)
oh, Judy, i hate to sound preachy, but you really should have consulted your dr. before quiting the meds.
i surely will say a special prayer for you, and will keep mentioning you and your daughter in my prayers!!
maybe she just need some time to sort things out and figure out what she wants from life etc., you know how they are at this age. well, let's just hope for your sake and hers that it doesn't take her too long.... :o)

it sounds encouraging what you say about dr. Chey. i truly hope he can help lizzie. i feel very sad for her.

Posted 12/26/2008 2:30 AM (GMT 0)
Thanks for the folks who answered my before surgery (11/25) questions.  It's been a month, and I know I'm a lousy impatient person with things (I've had two kinds of cancer, and 2 strokes).  I have had 8-12 bm's a day, no rhyme or reason that we can find, and not much guidance from the doc or dietician (try things and see what works is not very exact medical advice.)

Appreciated the soluble fiber tip.  It was helpful.  But I have to go back to work in 2 weeks and I'm not so sure how to manage.  If I eat, within an hour (I commute), I need the restroom.  I have diabetes, and can't go indefinitely without eating anything. Lots of the soluble fiber are bad diabetic choices, and unless I "plug" with cheese & sour dough bread, there is a slight rumble and then whoosh. (Sorry to be so descriptive).

I am also very very tired, and having a hard time with liquids.  Am watching for clear color and enough volume to catch dehydration early, since I've had electrolyte issues in the past. Naps seem to help, but the people at work are going to be noisy noisy.....

On the up side, I've got a great support group (wonderful husband, 6 grown kids), and a good work environment.   Just not used to things out of my control, or not figuring out how to control things.  Small meals throughout the day seem that it would like a possible solution, but unfortunately my work doesn't really work for that.

I think I'm whining ... and what on earth makes that painful burning about the 10th poo-water???

Annie rolleyes

Posted 12/26/2008 3:23 AM (GMT 0)

Hi Hodaya and thank you for the prayers.  I know I should have consulted my dr first but he did say I could probably go off them in 6 mos. if my levels remained normal; I just kind of rushed things nono ...I won't try doing that again...

Annie, for some reason there does seem to be burning with the more frequent bm's and then all your bottom becomes inflamed; it's a wonderful thing isn't it shakehead .  I use Preperation H wipes w/ aloe; I have found that I have to use them EVERY time I go to the bathroom or I end up with "issues" that are very uncomfortable, besides using those, I use either A&D or an Aloe creme that the hospital gave me when I had my surgery.  Also, I don't know if you can use this due to your diabetes, but, I see a nutritionist who specializes in natural and organic foods; I drink one container of pure coconut water per day, I dilute mine 50/50 with water.  This is supposedly the most natural eletrolyte you can get.  I have had up to 20+ bms a day and haven't had any dehydration problems yet. You can get the coconut water at any Wegman's in the Natural section.  I hope this may help you.

Blessings and prayers to you all,

Judy

Posted 12/26/2008 10:27 AM (GMT 0)
Amanda.... i'm worried about you.. how are you doing???
Posted 12/28/2008 4:38 PM (GMT 0)

Finallyfree,

I was up to 21 pills a day, and am finally down to 6, 2 of which are OTC the cardiologist recommended.  I do need to check now that you all have mentioned time release and colon, since I think one may be.  But my point is, I totally get wanting to get off something and have some normal back.  I've been noted as "somewhat non-compliant" in my chart, but my primary doc is also a friend and she does constantly check to be sure I've not made some decision on my own.

Prayers for you all.

Annie cool

Posted 12/29/2008 1:27 AM (GMT 0)
I am shocked to see so many people with colonic inertia. It has been 14 years for me to find other people who have it.
Does anyone know any new things that I could try for my pain?
Posted 12/29/2008 2:05 PM (GMT 0)

turn  Hello everyone,

I hope all had a good christmas weekend!!!

I thought I would pop in and give you and update.  I had the HIDA Scan done the day after Christmas and the results were that my gallbladder has stopped functioning completely!!! They told me that is the reason why the constipation has gotten so much worse.  Without the gallbladder dumping bile into the stomach and circulating down through the small intestine then into the colon that there is nothing stimulating the peristalisis action in my bowel and everything...."and i mean everything" backs up there and i have the BIG PROBLEM of not being able to have a BM....

now, it has to be removed.....so i am hoping and praying that this will make everything better.  I still have the colonic inertia but he is focusing on my gallbladder for now and i am ok with that.

I want to be able to get off of as much of the laxitives as i can.  The miralax is finally helping but i am having to gradually up the dose about every 3-4 days....he said that would continue until we do the surgery.....so .....

that is where i am right now!! on one hand i am soooo thankful and on the other of course i am a little apprehensive.....no body in their right mind ever looks foward to surgery of any kind!!!

have a great week,

tabitha

Posted 12/29/2008 7:22 PM (GMT 0)
I am new here and may be out of line, but my doctor told me to take as many doses of miralax as I needed to have a bowel movement. I took 10 doses in the past 3 days. I always take 2 doses at one time. Somehow I managed to get myself all backed up with Christmas. It is amazing how much poop we accumulate just by eating normally. I will make myself have a bm everyday, but still end up full of poo. My plumbing is all messed up. I have been advised that having my colon removed will fix my problem, but I still want a 2nd opinion. I am terrified! I spend 3 to 6 hours on the toilet everyday. I use 3 glycerin suppositories at one time too. I need to buy stock in miralax and fleet glycerin suppositories. HEEHEE about the transit marker test. UGH It was awful not being able to take any laxatives or use any suppositories. Can all you ladies have a normal bowel movement if the stool gets to the rectum? Because I can't get the bm out. No amount of pushing helps. Even water stool will not come out. Enemas are just a waste of time for me too. They either stay in, or I have to use suppositories to help the water to come out. It is my daily nightmare.
Posted 12/29/2008 7:25 PM (GMT 0)
you're right, Tabitha, no one wants to be under the surgoen's knife for what ever reason.

well, that's intersting, i've learned something new about the gallbledder and it's affect on the colon. but i have to ask, if the gallbladder is gone, then the bile can't be dumped into the stomach anyway, right? cause the gallbladder won't be there to do that, so how will that work?
but, surely, there's a lot i don't know, so i really hope that removing it will be enough and you won't need to have a colectomy.

so what's the dr's plan for now? do you have a date yet for the surgery?

thanks for updating us. please keep us posted.
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