TOTAL COLECTOMY PART 28

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esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/12/2009 7:13 PM (GMT -7)   
Hi Jenise,

Yeah I remember those pictures of your colon from your barium enema; that really showed a lot of redundant colon. I soooooo wish I'd been told to have one before 2006 surgery (for me they could have used gastrograffin due to barium allergy) but I did not know to ask as none of my 3 consulting colorectal docs suggested or told me that would rule out redundancy. I also didn't know of gastrograffin. Apparently mine had no redundancy even the sigmoid part according to reviewers of my defecogram. Even a gastrograffin enema I had after the surgery showed no redundancy of any other part. That along with the fact that my transit test was perfect even after my 2006 surgery means I had a totally great colon. I'm really wondering why 3 colorectal surgeons did not suggest that. 2 were at major medical centers and one at a smaller but regional trauma center hospital. One was one of "America's Top Doc" colorectal surgeons. So much for the castle-connolly top doc book.

Jen - sounds like you're doing super. WOW, am I envious but happy for you :-)

Lizzie - Glad your counselor is nice that really helps a lot. You sound more upbeat and sounds like you're doing pretty well. I'll be alll alone on this board pretty soon plowing through my endless paper work to make the world safer from my 2 original surgeons. I gotta check their court house and see if they have any additional suits. They're up to 8 with mine. They usually have a new one filed every 6 months or so. AND the beat goes on..... Finally finished my requests for amendments for my records at my primary care doc's where she didn't understand the complications and wrote me up as psycho at every visit. It was a lot of paper work, but I finished it and handed it to the Quality Assurance Nurse. I really do have grounds to get all this crap amended. After what I went through docs should be extra nice. I think she could smell a suit coming, but what she wrote was libelous. She is lucky she's not included on the defendant list for writing some of the things she did. Am in hopes some learning will occur. But you do what you can then forget it and move on.
Hope eveyone else is good. Gotta start going to bed earlier. Not working, my body has no clue what day or time it is. I gotta get set for my trip south if all stays well.

Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 11/13/2009 5:38 AM (GMT -7)   
wow.. part 28 already!

Rosemary, thanks for starting a new thread! It is just scary to read your surgical nightmare, and more scary to know that one was "America's Top Doctors"! I think a lot of us (me included) go by some of those reports. How could you know to ask for something other then barium, or for that matter to even ask for a barium enema!? Even reading here on this forum.. I wasn't going to ask for more tests.. but I'm glad the colon surgeon did as it did reveal more then what was thought even by the defecograms.

Jen, you're giving me good vibes! It's awesome that you are able to know and not spending hours in the bathroom! Did you just bring a robe and slippers to the hospital? Anything else you were glad your brought or had with you?

Lizzie, I agree with Rosemary - your posts just sound better. Glad you liked the counselor and hope that he and the medications will help. Sounds like you are doing okay bowel wise? You must be so glad to get rid of that leaking stoma site!

It's been a little quiet here the past few days! Hope everyone is doing well!
~Jenise~


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/13/2009 5:54 AM (GMT -7)   
Hi all,
 
I have a question.  Yesterday my bowel movements were decreased quite a bit.  Usually 10 to 15 times a day down to around 5 and not a lot at a time.  I started having abdominal cramps yesterday evening.  This went into the night with no bowel movements.  Usually have two or three a night.  I used a suppository around 5:00 this morning and got a little out.  The cramping is constant and in  my lower quandrant.  It is worse when I get up and try to move around.  I am nauseas but have not thrown up.  I also have a lot of belching and lots of stomach noises.  So what's up is this something normal?  I am wondering if I should call the doctor.  I don't want to go to the doctor nor do I want to waste their time. 
 
Any insight will be helpful.
 
Thanks
Jen

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 11/13/2009 7:41 AM (GMT -7)   
hi everyone,

i have just couple of minutes....

Rosemary, thanks for starting the new thread.

Jenise, i bet you're getting ecxited more everyday.. i'm praying for you.

Jen, maybe it's just a slow day, i used to have these kind of days early post op too, but it continued to be o.k the next day.

well as i said... gotta go.. will catch up later, love ya'll!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/13/2009 7:52 AM (GMT -7)   
I'm feeling somewhat better. Pains are not constant, and I have been able to go to the bathroom some more. After my last post I drank a lot of water and drank and ensure. I think that helped move things along. I guess this type of thing will happen every now and then. It was not a fun night and it was worrisome. Still have some pain especially when I move around but not curled up in a ball anymore.

Jenise I took a bathrobe, slippers, and pajama bottoms with me. I wore the hospital gown the entire time due to the iv but once the catheter was taken out I also wore pajama bottoms. It just made me feel better. They were not tight fitting around the waist so they didn't bother my incision. I also took the normal toiletries plus butt cream, air freshner, and prep. H medicated wipes. Toilet paper would not have been sufficient for the major D and would cause irritation. Then of course my ipod and most definitaley my cell phone. I am a big texter so that helped pass time. Magazines are also good.

Jen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/13/2009 10:33 AM (GMT -7)   
Hi Jen,
Glad you're bettter today. If I were you I'd keep a food log. Working with the small intestine not matter whether it's hitched to a bag or to your rectum is real different from having a whole gut system. One night I ate mashed potato and they literally all clogged up somewhere in me I was in agony until 3 a.m. then I got up and drank a lot of hot tea and grape juice and all the potato moved out into the bag all at once. I think the code is lots of liquids continually and solids in small amounts. I've got the bag and I know I've been working on finding the right balance for 2 years, I still don't have it down yet. If your issue had persisted today I was going to say call your doc, but one bad night doesn't necessarily indicate a serious issue. Keep the food log though. Hope you continue to do well.

Hi Jenise,
Yeah, with my whole legal issue I have real trouble separating what I now know from what I knew prior to the 2006 surgery. Back then I was working full time and just went for these 3 consults. I was a blank slate medically and depended on these docs for appropriate testing, did the suggested tests, then went back to work. It's only after making this my work (because I lost my job and am not even close to having the energy to return to work of any kind) that I've had time to learn of all this stuff. Plus I learned from the 11 surgeons who tried to decipher all the damages post-op for a year. So in essence, I've now had 3 years of "medical training." Not the norm when a lay person goes on consults for a problem. I think once I get that all separated in my mind I'll be better. You are real lucky your surgeons tested and tested and tested. Are you dealing with Cleveland Clinic? I forget.

Yesterday I handed in all the record amendment requests for my primary care doc's quality assurance supervisor to look at and hopefully approve. As I did it I really realized how much of a right I have to request these amendments. She didn't understand the complications so blamed it all on me. WHat a cop-out. Plus she did nothing to refer me on for help when my original surgeon did nothing. I suppose she though labeling me as a nut would get her off the hook, but no, that's not how it goes. I did a good job on the paperwork and kept it factual then stapled supporting documentation from 2 psychiatrists saying i was not a nut but needed surgical help. The I stapled on the tests showing the scarred colon, rectum, and small intestine, then the ileostomy report. I'd say there's not much room left for argument :-) Today I'm working on my 10 pages of written testimony to leave with my atty when I go away this winter (hopefully all will stay well and I can go). It's by the date, what docs I saw, what was done, who said what, quotes from their written records. It's testimony I would give verbally. My Atty is so into doing the case all by himself without my involvement that I have no way to know when he will need me so this will cover me. All this is far much more work than working, but it's getting done. Maybe I'll get a huge settlement "Paycheck," find a cure for adhesions, and really contribute to society, who knows?
Have a good day everyone, Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/13/2009 11:04 AM (GMT -7)   
Rosemary I think a food log is a very good idea. I was doing so well and yesterday I ate more solids than I ever have. I knew I was in trouble yesterday evening. Today I am going on a soft diet so that things can move through. I am scared to death of getting a blockage, the other fear is adhesions.

I took some vicatin this morning to help with the pain. I feel ok when reclining but walking around causes pain and discomfort nothing like I have felt before. So goes the slow recovery which is hard for me.

Hope everyone is doing well. Lizzie are you doing any better today?

Jen

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 11/13/2009 1:09 PM (GMT -7)   
Rosemary.....Good luck with all this legal issues. I cannot imagine, your so strong and so good for this website.
 
I am doing better today Jen......still not eating much, but I at least have a slurpee or ice cream everyday to get in extra calories :) Still holding about 100-101. My mom hurt my feeling yesterday and said I looked emaciated in the face and neck, but i do not think i do. I think i look healthy and most other do to. The only thing that is bothering me is that I have had to increase my MOM to twice a day. My meds seem to be working....I feel ok. I do not feel perfect, but trying to be more positive and especially for all of you.
 
Jen, just go slow, it does take time.....some things make me go and some do nothing and I feel slightly bloated. Drinks lots and try some solids and chew really well. I had some pratial obstructions and they pass with fluid usually......hope your feeling better.
 
Jenise- Hope your doing well...time will fly by....its the recovery that seems like forever and you have the holidays in between. Thanks for your encouragement. I do sound better and feel better, but I still have my moments. I think something is still wrong with my rectum becuase when the stool comes out its very thin if its not liquid and I really have to strain. I start biofeedback next week so we will see what has happened to my tone. Say some prayers.
 
Thinking of everyone else......Love you my familia.
 
Lizzie
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obstruction April 4, 2009 and emergency ileostomy 4/13
Re-admitted with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Anismus undetected (no medical explanation)
Retracted stoma-infection/skin breakdown.
Ileostomy Reversal- Oct 8, 2009. Ileus, Dehydration-Ongoing, but resolving 10-15
 
"The Greatest Healing Therapy is Friendship and Love"


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/13/2009 1:50 PM (GMT -7)   

Hello everyone,

Just doing a quick check in to say hi.  Lizzie, you sound so much better!  I know you have a ways to go until you feel "normal", but you are sounding better, and I'm so glad.  I've been worried about you!

Jen, A food log is a great idea and I kept one for months.  It really does help you remember what works well and what isn't so great!  I hope you're just having a little glitch.  Even though the first 3 months I went so often, I still had a day here and there when I wouldn't go and would get very uncomfortable.  Eating soft foods and drinking lots of liquids definitley helped.

Rosemary,

You certainly have alot of experience, don't you?  Most of which I'm sure you wish you didn't have experience about.  Just reading what you're doing makes me tired, but I wish you all the best and hope you get that big "Paycheck" one day soon!  It can never replace what you've lost, but hopefully it will make it a little less painful.

Jenise,

It's getting close!  I know you're excited/nervous, but before you know it, it will all be behind you.  Good luck!!

Everyone else, hope you're doing well.  I'm still taking miralax and it's still helping.  I've also had to use an enema a couple times, but that's when I've been an idiot and eaten too many chips.  I was never crazy about chips before surgery, but I've gotten hooked on "sun chips".  I know better than to eat more than a few, but at work one day I must have munched all day on a bag and finished it off.  That night I felt horrible until I used an enema and drank more miralax.  I hope I've learned my lesson.  Eating soft foods definitely makes a difference for me. 

Yippee, it's Friday!  Hope everyone has a wonderful weekend full of pooping:)

 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/13/2009 4:07 PM (GMT -7)   
Hi Lizzie, Janie,

Lizzie, glad you think I'm good for this site. I certainly am not a model patient in terms of outcome, but am for things learned too late. There's a saying "Experience is what you get when you didn't get what you wanted." I'm the poster child for that. Lizzie, good luck with the physical therapy, what on earth is that rectum of yours doing? I'll keep my fingers crossed for you.

Jen, Janie, Jenise,

I see what I eat the soonest of all of us and I can give you the recipe for "Go" foods and "Stop" foods! I charge for this advice you know :-) Only kidding!

"GO FOODS" Hot caffeine coffee and tea; chocolate; alcohol (Be real careful with this, just a few sips will produce seriously liquid effluent), grape juice, orange juice, anything sugary, anything with fake sugar: sucrose, sucralose, high fructose corn syrup. Juice with lots of ice in it, any flavor sherbert, especially sugar free sherbert; italian ice, salty soups, York Peppermint patties; Boost, Ensure due to all the sugar. (actually it's not too much punishment to eat these GO foods.)

"STOP FOODS" starchy stuff like potatoes, winter squash, bread, crackers; cheese, bananas (BEWARE of bananas--never eat a whole one), rice, applesauce with pectin (this is a real stopper), macaroni and cheese, PRETZELS..........BIG TIME STOP FOOD!

Personally, I feel best when stuff just whales through me and I'm done with it. But, without the use of the colon to reabsorb water and electrolytes back into our bodies, we can dehydrate if we lose too much liquid in our poop. that can lead to kidney stones. So our poop is supposed to be the consistency of pudding. soft enough to pass (however we are doing it, but not so loose that our bodies are not absorbing liquid. We are supposed to produce 2 quarts of urine per day. So without the use of the colon, we are doing a juggling act. Also we need to be sure we get enough salt and potassium as that is lost in effluent (our version of poop). these electrolytes are important as they keep our muscles working including the heart. I have chronic fatigue, lightheadedness, and muscle aches. my electrolytes all look good on blood labs, but they can fluctuate during the day. adding too much salt will increase effluent loss and actually lower our sodium balance. the more I learned from my ostomy nutritionist, the more I wondered how do people survive without their colon to do all this water and electrolyte absobing? That is why some docs try to leave as much colon as they can (If a person does not have colonic inertia that is.) My colon was super that is why I'm real upset that what had to be done to save me was to eliminate it all of it from use.So there you have it! My recipe for success.

good luck and good weekend everyone.

Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/13/2009 4:08 PM (GMT -7)   
Hi,

I forgot....lemonade is a great GO DRINK! Rosemary

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 11/13/2009 7:27 PM (GMT -7)   
Rosemary,
Thanks for your lists! You know, I'm 8 months out from total colectomy, and at first alot of the foods and drinks you mentioned did just go through me so fast, but now they don't have that effect at all. We went to Outback tonight, and I had 2 rum and cokes. 6 months ago I would be running to the bathroom for hours, but now it doesn't do it at all. I'm not a big drinker, but usually on Fridays we go out with friends and I have a couple drinks and it's just not an issue. I WISH the "go" foods would work like that for me. I agree with all of the "stop" foods, though. Just seems like most things are stop foods for me without miralax or prune juice.

I try to drink alot of water, but I always wonder how my electrolytes are. Should we be having tests regularly to see, or will I know if they're low?

Janie

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/13/2009 8:35 PM (GMT -7)   
Hi Janie,

WOW! 2 rum and cokes sound like fun, that would be the good old days for me. I know what you mean, I never drank big either, but really a nice way to end the week with friends on a Friday. I'd be running to empty all night long on that. Too bad things slowed for you so much in the other direction. Glad the Miralax and prune juice work for you. I don't think I'd ever need those, but no part of my system was ever slow to begin with but that's just the difference in bodies.

I try to get my electrolytes checked every 6 months at least. My sodium is usually low and that carries with it a lot of symptoms fatigue, poor appetite, etc. See OHIO76's post to my topic about ileostomate feeling lightheaded. THat person seems to know a lot about electrolytes and provided a link on this subject. We have a lot of knowledgable people on this forum. If your system has slowed to the point where you need Miralax and prune juice to go though, you may not have any issues with your electolytes. Some lady named Bev has tons of liquid output all the time and I guess is in real trouble with electrolytes. Hard to hit a happy medium when working with the small intestine. Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/14/2009 5:53 AM (GMT -7)   
Thanks for the list Rosemary. I am feeling much better today. Not sure what I'm going to eat today. I hate having to think about every little thing I put in my body but if that's what it takes for me to be healthy then I'll be doing it.

Jen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/14/2009 11:17 AM (GMT -7)   
Hi Jen,

I know what you mean about not wanting to think about what you are eating all the time. I'm 2 years with the ileo and I still don't have it down pat. Sometimes I get so tired of thinking about it I take a what the h--- attitude and down a chocolate bar then am running to the bathroom a lot. I think I'd be a lot more careful if it came out of my rectum instead of into a bag as with the bag there is a bit of leeway in terms of choosing when to empty it. I sort of have the gift of time when it comes to locating a restroom when I'm out.

I't pouring rain here today and I'm typing up my entire testimony for my case in case my attorney needs it while I'm away. He told me not to contact him unless he contacts me. So, I can't tell him when I'm going away and ask if he'll need me Jan 7 - March 17. SOOOO, am doing my best guessing and am just typing my testimony and will sign it. That way if he or the defense attorney needs it while I'm away he'll have it. He is one of America's Top attorney's according to news week magazine and am just assuming he is quite abrupt and into the "Don't bother me thing" because he's so busy because he's good. But it will be interesting to see if this turns out to be the case. After all one of "America's Top Colorectal Surgeons" could not tell that I did not have a sigmoidocele when he looked at my original defecogram and did not realize his own radiologist had mistaken a loop of small intestine for a loop of sigmoid colon on my pre-op defeocgram report. SOOO, we'll see about the America's Best Attorney too.

If all of this that happened to me did not put my body and potentially my life in such serious jeopardy, I would be laughing hysterically. It would be comical as my whole tale was such bad Karma. Anyway, I gotta finish this testimony and get out and walk in the rain, I need that long walk every day.

Take good care and good luck with the food. When in doubt go easy. But it does get old having to think how it's going to go through. Especially when you see others literally chomping down. When I watch some people eat it amazes me. They talk while they eat, don't chew, swallow stuff whole, and eat so fast. Then I suppose they go take a full comfortable dump in about a minute or less then go on with their day. Ahhhhh, would be so nice. Ah well, we deal with what we got. Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 11/14/2009 11:17 AM (GMT -7)   
Rosemary,
thanks for the "go" list, but like you Janie, i'm affraid i've also slowed down so much and it seems almost all foods constipate me :( unless i start taking a laxative. i'm drinking LOTS of prune juice lately, a 250 cc every evening!!! (which means LOTS of calories!!!), but it's been less afficient in the past couple days too! i'm so worried and don't know what's ahead of me, how much slower things will get...???

everyone.... you're all talking about soft foods.. well that's only what i can handle too, can't handle solids w/o taking something to help move the solids i ate. i so hate it that i have to think millions times before i put anything in my mouth too, Jen. i hoped for better than this.

i feel it very clearly that i have a rectocele, it's obviously there and i'm gonna need to confirm this with a defecography. but i'm not sure the rectocele is what causing all of my issues, and mostly im scared that my small intestine is just also slow.

do any of you have floating stools? i've read in my surgeon's forum (someone asked about floating stools). he said that it means that your body doesn't absorb fat too well and that way the stools consist fat (oil), and oil always floats above the water and that's why the stools floats. mine isn't always floating, i noticed it does after i eat oily foods. do any of you know if there's something i can do to help with fat absorbtion?

in general...... i just don't know what to do anymore and HOW to handle all of this. i don't know if i ever mentioned this here, maybe b/c i didn't want to think much of it, but ever since my surgeon released me i started to feel i'm going down and down more and more and feeling just too weird. i think i'm getting a real depression, cause i can't stop crying..... darn, it's so hard, it takes a lot of energy to cry and i hate it. i wake up in the morning and the first thing i do is shed tears and cry..... than during the day i always cry... at work, at home, on the buss, on the street, and.... at the end of the day i cry myself to sleep.. can't stop crying.... what's going on with me?????? and it seems it's only getting worse. i'm SCARED of taking any happy pills, never used any of those and i keep telling my mom i'll be fine and get over this w/o meds, but honestly it's too hard.

do you all think it's the change in our bodies cause this? i don't know, maybe an imbalance of hormons and stuff??

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 11/14/2009 1:39 PM (GMT -7)   
Hodaya, I don't know why you are crying so much. I cry roughly once a month and this seems to be linked to me still having ovaries. I do not have a uterus, but still have a mini PMS where my boobs swell and feel very sore. That is when I will cry about something or another. So maybe it is hormonal. I know me staying very busy and working as many hours as I can get keeps the depression at bay. I get very depressed over the summer when I don't work. I have no idea why! I hope you can get a handle on this very soon. But, I am betting a major surgery and flucuating harmones both are playing a part in this crying.

Rosemary, just a thought....maybe you are drinking TOO much water. Too much water can dilute much needed electrolytes that our systems need. I am a firm believer that we do not need to drink constantly. Yes, I dehydrated myself recently, but I think this was due to too much miralax, not enough water, and depriving myself of liquids during the workday while driving the bus. That is just a thought that I had??????????

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/14/2009 2:30 PM (GMT -7)   
Hey Hodaya I really think that if I were'nt on happy pills I would be crying a lot. I still get upset easily and little things bother me more. I know that a lot of it is being down from staying at home all the time. Also the mental and physical toll surgery takes on you. Then the whole what can I eat or not eat game along with when will I be able to pass what I eat is exhausting. I completely understand how you are feeling. I know that it is hard to make the decision to go on depression meds, but I firmly believe it has helped me. I am really sorry you are having such a hard time.

Hodaya you talked about floating stools. Well mine definitaley is linked to what I eat. If the food has a lot of fat they will float. Also today at lunch I ate chicken and dumplings that a friend made. The soupy part you could tell was just greasy and very fatty. Well I have been running to the bathroom all day and the bms are literally oily. It's crazy.

Gosh it seems really weird talking about poop like this. Sure am glad I have you guys, my husband looks at me like I'm from Mars when I tell him some of my pooping woes.

And yes Rosemary it infuriates me to see people inhale their food without a care in the world. I get so irritated because my husband can inahle his food, eat anything he wants, and will go to the bathroom at least twice a day every day like clockwork. So unfair!

Jen

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/14/2009 3:08 PM (GMT -7)   
Hi all I need some advice on insurance. I just got the bill from my surgeon and it appears that my insurance denied the claim on my total colectomy. I have blue cross blue shield of NC. It infuriates me because I spoke with the surgeons office early on and they said that they check all that out ahead of time to make sure there are no problems. I am freaking out. I hope there is just a coding problem.

Any suggestions or anyone else dealt with this. HELP PLEASE!

JEn

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/14/2009 3:16 PM (GMT -7)   
Hey Tracy, good to hear from you. I've been thinking about you and was going to ask what was new....but I think I know..... Dec. 28th is still a ways off but will roll around before we know it. I think you may be right. I am so scared of getting a kidney stone from not having the use of my colon to draw water into my body that I think I do tend to over drink water and juices. Today I really derailed: I had a big dish of chocolate ecstacy ice cream (chocolate with chocolate swirl and chocolate chips) Then I had a ton of candy corn all washed down with a lemonade. I'm running back and forth to the bathroom. My colon was fast, but my small is extremely fast. Tomorrow I'm going to an ostomy support group meeting. I have got to break my frustration and get with other ostomates and get on some sort of sensible diet. I eat weird out of frustration. I'm so glad I have you all here on the forum, but I need some people in-person too. I wish we could all get together; it would be soooooo cooool!

Hodaya, even though my small is like lightning speed, I get depressed a LOT. I don't think it matters what the specifics are, I think we have all been through soooo much that anyone in our shoes would react the way we are....or they may not be doing even as well as we are. Hodaya there are a ton of small bowel absorption tests. I've had them all because when my ileostomy was new I was emptying allllll the time. The absorption tests are easy, you just put poop in these little vials and they send them off to some lab. My GI doc did about 10 tests. They all came back fine. I had what they call dumping syndrome (too fast movement of food from stomach to small intestine) then too fast through small when ileo was new. Am still fast but has slowed down a lot to just fast rather than lightning fast. Do ask your GI doc about these tests.

I feel bad for anyone whose small intestine is slowing down that must be scary. Bodies are all soooo different.

I don't even own ovaries anymore and I'm in a constant state of PMS even on the hormone patch. This rain here in the northeast is going to drive everyone looney tunes. Is it raining where you are all from too? Take care, Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 11/14/2009 3:27 PM (GMT -7)   
Hi everyone,

What are happy pills??!

Jen, glad you're feeling a bit better! I totally hear you regarding our 'poo' talk! I have kept this all a secret from my husband for YEARS! He never knew I had an issue until this last issue - and all the tests. As far as the insurance, it could be just a coding error, and I'm sure it will be worked out. Out of curiosity - how much was your bill? I've had 3 surgeries within the last 7-1/2 months, and have been billed $160,000.00!!! Thank goodness I have insurance - and even though - I've paid $5000 out of pocket. This upcoming surgery should cost me $0.

Hodaya, my goodness.. it saddens me to hear you are concerned that things are getting worse and worse... maybe a visit back to your surgeon is required. I do think everyone here is under a year of recovery, and I know my uro-gyn and his nurse prat. both told me that FULL recovery really takes 1 whole year.

Rosemary, that was a good list of foods, I'll have to revisit after surgery.!

Janie, so it sounds as things are at least somewhat better then a month ago? I sure hope so. Did the doctors ever say issues would still continue? I think I recall a research studies where a percentage of people who have this surgery have either diarrhea OR continued constipation!

I don't know about floating poo! I did asked a few post back if anyone suffered from FLAT stools?

I've been out all afternoon shopping. I really should stay out of the stores as I get tempted!
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 11/14/2009 3:28 PM (GMT -7)   
Tracy, just missed saying hello to you!

Rosemary, having a ig dish of chocolate ecstacy ice cream - would be worth running to the bathroom!! LOL
~Jenise~


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 11/14/2009 5:23 PM (GMT -7)   
Rosemary, I think you may be right...you are so worried about kidney stones and blockages that you overcompensate by drinking too much fluids. Maybe you need to try decreasing just a little and see what happens. But you were reallyyyyyyyyyyyyyyyyyyyyyy sick before your ileostomy and that would scare the bejeesus out of anybody. But you need energy too and maybe your vitamins are too diluted. Just a thought I had and I want you to feel better.

Janie, so the miralax is still working for you? It is wonderful to have something help. How is the rectal pressure now?

Okay, I went and researched floating stools and it says it is caused by an increase of gas in the stools that makes the stool less dense and allows it to float. So, no big deal there. LOL

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 11/14/2009 5:34 PM (GMT -7)   
Tracy,

Good research on those floating stools! We are really something aren't we. We have knowledge NOBODY else has or would ever WANT! hahahaha!

Jenise,

Oh, yeah, I gotta say chocolate ecstacy ice cream was WORTH IT! OH, yeah!

Rosemary

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 11/14/2009 5:54 PM (GMT -7)   
Jenise my bill just for the total colectomy was 5, 300 now that does not include doctor's bills, pharmacy, hospital, etc, etc. I sure am thinking it has to be a coding error. I can't imagine they did not check to make sure my insurance would pay before they cut on me. They told me that was standard. Also they had no problem with me staying in the hospital for 7 days and even asked if I felt I was ready to go home. I think if insurance wasn't going to pay they would have rushed me out. I don't know. If they don't pay looks like I will be refinancing our home. I bet the bill will come to 50,000 when all said and done. I will fight tooth and nail before I cave though. I have a 9 year history of doctor visits and tests and all medications in the world tried before surgery was last resort. Even had second opinion on surgery. I guess we will see.

Chocolate Ecstacy ice cream.....that sounds good.....think that would put some pounds on me. Of course I know it would run through me so doubt many calories would get absorbed.

Jen
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