TOTAL COLECTOMY PART 30

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2b ColonFree
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Date Joined Nov 2008
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   Posted 12/28/2009 1:34 PM (GMT -7)   
Lizzie, good luck on Wed! Rosemary and Lori have so much good info and advice for you, it's so helpful and encouraging to have such knowlagable and compationate ppl on here!!
 
ever since my drs told me about the surgery i've been in anxiaty, but mine is not as bad as yours. i just find it hard to swollow most of the day, like i have a huge lump in my thraut, but actually there's nothing there. and yes, i feel very vulnerable and mostly scared that i act funny at times, it's the stress making me kinda jumpy and nervious at times, something i never experienced before, but only since talking about surgery. but i'm working on myself to get over it, i must, cause it takes too much of my energy.
 
the possibility of an ileostomy is always at the back of my head. when nothing works for me anymore, i will definitely opt for one. i must admit, it's scary.. i would lie if i said it isn't.
 
good luck honey, love you always!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 6:22 PM (GMT -7)   
Hodaya, are you getting another surgery? Or are you still freaked out from the surgery you just had? Because I am still sitting on the fence due to feeling pure terror when I think about ANOTHER surgery! EWWWW I hate it. I hate surgery, I hate pain, and I absolutely hate to puke. I see the doctor tomorrow, this is Doctor #2 out of the 3 colorectal surgeons that I have seen. He seemed the most knowledable about the anismus. He is the one that did the botox injection. As far as anxiety attacks...I do have them, but it is only when I feel very nauseas and my stomach is sloshing so bad. It makes me panick. How is your pooping going? It just blows my mind that many of ya'll to take miralax with no colon. ALL the doctors told me I would have horrible diarrhea and would be switching from miralax to immodium. HMMMM???

Lizzie, could you possibly have the adhesions of your small intestine that Rosemary had? It just seems like you have some sort of blockage because your food can't go down? Can you eat soup, puddings, and jello? Have you tried mag citrate to try and melt the poop so hopefully it can come out? I feel so bad for you and am hoping you get some answers and very soon. being sick like you are is not normal and there has to be a doctor that can find out what it is and fix you once and for all. You deserve a better quality of life!

Jenise, how are you coming along? Have you decreased the miralax? I am hoping you can get on eventually without anything...wouldn't that be just awesome? Is it easier to get the poop out? Oh, I so hope you continue to poop normally. That is my dream come true, that the doctor can fix me and I can just poop. I never thought my big dream would be that I could just poop. LOL it is funny, but oh such a nightmare.

Rosemary, how are you?

Hoping everyone is doing well.

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 6:28 PM (GMT -7)   
Thanks for starting a new thread Hodaya! Have you started the new doctor's suggestion ( magnesium) yet?

Tracy, thinking of you... hope this new doctor gives you hope instead of a feeling of dismay. Let us know how it goes!!

Lizzie, I know Wednesday is your appointment, is this with CC? I can't recall!! Anyway, I hope that they see how you react to food and see you need help!!

Janie, Jen or Judy.. I need to ask what a BM is like for you. If I remember right, none of you suffer from rectum issues. I was worried about my rectum, and pelvic floor issues, but so far (crossing my fingers) my rectum seems to be working. I reduced the MiraLax to 2 x's a day, and my stool is more like toothpaste.. and comes out kinda like little worms (sorry TMI!!). Would you say that is normal? Also, what do you actually feel when you have to have a BM? All I feel is the feeling like I need to pass gas, usually all of a sudden - the feeling is in the rectum, and I know this means get to the bathroom ASAP. I don't know if I should try adding any fiber, or reduce the MiraLax a bit more. So far.. foods all seem to be fine with me.
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 6:36 PM (GMT -7)   
Tracy, we were posting at the same time! So far - Miralax and all, it is definitely better! I am NOT straining hardly at all - just gently pushing. Maybe I'll have to take MiraLax forever, but if I can just go and feel normal, I'm okay with that. I'm just afraid it may not last forever... but I'm not going to think about what may or may not happen. I forgot to tell you, that in my hospital, which is a large teaching hospital, I was put into a couple studies. One was for a silver impregnated dressing, and the other was for this new medication that is suppose to help post op ilieus (guess I failed that one!!) at least to some extend. This pill is suppose to replace the need to a NG tube, and even though I had ilieus, no NG tube was needed. Good luck tomorrow.. I sure hope this new doctor has a treatment plan. Unfortunately, removing part or all of your colon will not help with anismus. I'll be thinking of you tomorrow!
~Jenise~


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 6:37 PM (GMT -7)   
NO, I wouldn't add fiber yet. Fiber turns my poo to cement and you are too soon out of surgery to deal with that if that happened to you I would think. I think toothpaste is a good consistency. That is the consistency of the barium when they did my defecogram???? I bet you still have swelling and maybe that is why you have skinny poo! Hey, as long as you are going then be very happy. I bet you feel awesome and empty! That has to be a great feeling, Does your stomach feel gassy? Can you fart?

Rosemary, can you eat pickles with an ileostomy? Because I love pickles and eat them alot and drink the pickle juice too.

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 6:47 PM (GMT -7)   
Tracy, yeah.. you're probably right about the fiber! Can I fart?!! LOL... well, not really! I do have gas, and it finally gets to the rectum (it didn't before surgery) but if I feel the need to fart.. I better be on the toilet because there will be poo with it! It's kinda explosive.. As far as the surgery.. each of us is so different, and recovery times will be different, I was told by my wonderful uro-gyn and the other doctors that this would be a long recovery.. and more-so because it was an open procedure, but for me - it was not that hard! I'm amazed at how well I feel.. I'm not weak or tired, and really feel almost normal! Today I walked on my treadmill 1 mile. I haven't drove or gone shopping yet.. but I feel I could go out comfortable for an hour or two. This is my 2nd major surgery within 8-1/2 months, and I expected it to take a t least as much out of me as the first - if not more. It didn't - and I'm thankful for that!! I am however, playing it up a little because I want hubby to have to take and put all the Christmas decorations way!! LOL
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 6:48 PM (GMT -7)   
Rosemary, I just noticed you also started us a new thread! Can you move your post over here?
~Jenise~


XtremeMisery
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Date Joined Sep 2007
Total Posts : 687
   Posted 12/28/2009 7:09 PM (GMT -7)   
Hello friends...
 Today has been awful. Work was ok, tiring, but mid-afternoon I had so much belly pain I had to take a percpcet at work. I do not like doing this especially since I give toxic drugs. I did not eat much except for some oyster cracker and a few chocolates. I came home and was SOOO hungry after being on my feet for ten hours. I had some chicken noodle soup, little turkey, and crackers. I immediately swelled up and became incredibly distended. I vomited within the half hour. I felt to dizzy I made myself eat again and so far I have kept it down. I had to take some more pain meds and just feel weak and dizzy (may be the pain med too). I took MOM at work today and went once just liquid after eating. I am going to stop in the am so I can prepare for Wednesday. My appt is here with my surgeon. I have not seen him in at least 2 months and I am planning on eating, but afraid I will end up in ER if I am not careful. I took some pictures of my belly tonight if any of you are intrigued. I sent them to Jen and she could not believe what she saw.....
 
Jenise...I am SOOOOO happy for you I could cry. I think toothpaste is good consistency and I agree with tracy I would not add fiber...not yet. I also agree that the residual swelling is probably making the stools skinny and too much fiber could cause constipation, obstipation or worse and you are still healing despite how wonderful you feel and you had more work than just a resection of the colon. I truly am so happy for you....what a blessing this is for you.
 
Tracy- I am not sure if I have adhesions...I could, possibly. My last surgery I did not have any when he went in, but that does not mean anything. I am just hoping for help and quick...I hope you can find some relief too...i feel so badly for you and I hope tomorrow brings some insight from this doctor and his experience with anismus. Does your belly do what mine does??? Please update us as soon as you get back from doctor. Praying for you everyday.
 
I love you all....let me know if any of you want to see my ugly belly...it is fascinating in a wrong way.
 
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 10/13. New rectal dysynergia-biofeedback-11-19
 
"The Greatest Healing Therapy is Friendship and Love"


answers4me2
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Date Joined Dec 2008
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   Posted 12/28/2009 7:36 PM (GMT -7)   
Lizzie,

My belly swells up real big too. Probably the size of a 5 to 6 month pregnant woman. I don't vomit though, but will feel extremely nauseaus if I take too much miralax and can't get it out. It is funny though....my husband will flick my belly and it sounds hollow, like a watermelon. Is yours like this? I am usually okay, even with a distended belly if I don't put on anything binding. If I have on jeans and my stomach swells, then I have to take them off immediately seeing as my stomach will get even bigger and will hurt horribly if it is squeezed at all. Are you like this? I have found that I can use a rubber band if I have to unbutton my pants while I am out. Send me a picture of your belly. Can you post it on here. I feel so bad for you. If these doctors only know how much we look to them to make us better. They might treat us nicer if they knew how much faith we have in them. LOL What doctor are you seeing Wednesday?

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 7:54 PM (GMT -7)   
Put it this way Lizzie...I wear a size 8 jeans, but have to wear a 10 or 12 to accomadate my enormous belly. This is a weekly occurence for me too. I do a bit better when I am off work because I can spend even more time in the restroom and take more miralax. When I work, I sometimes work 10 to 12 hours days and obviously can't sit on the toilet 4 to 6 hours. I have been off work for a week and tonight feel pretty good. But it took days of miralax and nausea and sitting on the toilet for hours to get to this point. Are you like this?

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 12/28/2009 7:58 PM (GMT -7)   
Hi Tracy,

Thanks. I have no clue how I missed this and started "my own" tc 30 thread. Anyway, I found you. I just packed all day for my cruise and the cruise line stopped today to get our big bags that will supposedly meet us on the ship Jan. 10. So we only have to carry a small bag on the train Jan 7 to meet the ship. So that part is good. But my eyes are twirling in my head from all that packing. Was at it for 9 hours straight! Auugh! Rosemary

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 8:07 PM (GMT -7)   
I am trying to think of some good questions for the doctor tomorrow??? For some reason, my mind is drawing a blank. What should I tell him/ask him?

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 8:14 PM (GMT -7)   
I did think of this. In my research, I read that intussessuption(sp?) can only be seen on defecogram after you empty the paste out of your rectum.....well, I left with a rectum full of the paste so they couldn't see if I definately had intusseption. At my appt with him this summer he said some "slipping" of the rectum....what is that? Intusseption????? Because something seems to block the rectal opening and this is why I have to insert my finger, even to release water. Do you guys think intusseption could cause this anismus???????? Because on my defecogram, the anismus was not seen until the very end of the tape and this was after repeated attempts to empty the paste. Before then, it was just alot of straining with a tiny bit of the paste coming out.

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 12/28/2009 8:17 PM (GMT -7)   
Wondered where everyone was.......I was just starting my own thread........anyway, no Tracy you cannot eat pickles with an ileostomy. You COULD but you would likely end up with a stomal food obstruction. Not anything I want to try. No nuts, no seeds, no peels. There however is always the blender or you could just drink the pickle juice.

Good luck Tracy and Lizzie with your appointments. Do the "demo" for the doc Lizzie, one demo is worth a thousand words.

I just pureed some brussell sprouts and will try a bit tomorrow. Do you know even if you puree a vegetable it still thickens effluent that comes out of the stoma? So the fiber is actually still there.

Jenise, I would vote for holding off on the fiber too. Enjoy the good success you are having.

As I posted on "My own thread" :-) I packed for 9 hours straight today for the cruise I leave on Jan. 10 (hoping all stays well). The cruise co. van picked up my 2 big bags today and supposedly they will be on the ship when I get there. Now all I have to lug on the train to Florida Jan. 7 is a small suit case for overnight. Then we spend 2 nights in Fort Lauderdale and then we get on the ship Jan. 10 at the cruise terminal in Ft. Laud. I cannot believe it took me 9 hours to pack. Of course my ostomy supplies I did not send ahead and will bring with me on the train. They take like a whole suit case in themselves.

Oh, by the way, does anyone from here live in Ft. Lauderdale, I'll be there arriving the night of Jan 8 and will also be there the night of Jan. 9. If anyone does, I can give you the name of the hotel and we could meet for lunch or whatever we can eat. How is the weather in Florida now?

Rosemary

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 12/28/2009 8:46 PM (GMT -7)   
hey, just wanted to say hi, i need to catch up, but i'm in hurry for work, so i will when i get back. LOL i can't live w/o you guys....

i'm a slower reader in english than in hebrew and also expressing my self takes me longer than in hebrew, so it takes me longer to read and post..

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 8:57 PM (GMT -7)   
Rosemary, that sounds like such fun. I have never been on a cruise before. Wow, just imagine packing with 4 kids. When we have traveled and I had to pack for the 6 of us it was so stressful. UGH But, I always found I packed too many clothes. Can you do laundry on the cruise ship? Is the bathroom on a ship like one at home? Because I always have to have the toilet and sink in the same locked room. We purposely did not buy a house because the bathroom had a sliding door and no lock. I told my husband, heck no! Can you believe that is what I was looking at? Who thinks of stuff like that? Only somebody who can't take a normal crap. HEEHEE I told my husband I spend so much time in the bathroom I needed a nice one. He said ok. He is so special and supportive of me. He feels very sorry for all of us in here because he can go in the bathroom, poop, and out of there in 2 minutes flat. I feel so jealous of him. He also can take a poop in a public restroom. I have NEVER pooped in a public restroom. Can you believe that? I mean, NEVER! I can't believe I even talk about pooping on here either. It is so embarassing. I am very thankful I can talk in here about it though because it helps so much.

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 9:00 PM (GMT -7)   
Rosemary, you did great packing!! I take 2 weeks to pack for a 7 day cruise!! How long will you be gone? I always get internet access while onboard.. if you do, pop in and say hello!!I'm here in FL but on the other coast (west) Weather wise - we are usually pretty much the same. It's cool here in the 60's tomorrow, but Wed. it warms up again into mid 70's. Tell us again - where are you going!? I jealous.. but I hope you have a wonderful, fantastic time!!

Lizzie, I'm intrigued to see your belly! Can you post the images here like I did my barium enema? I think t's important the doctor sees how you get with eating.. I'm just really praying for you! My belly does blow up (not so much now post op and on this low residual diet) but I never had to increase my pant size - but sure did like to unbuckle or take them off!

Tracy, when is the last time you had a defecogram? I had 3 within this past year - and at 2 different places, with 2 different results.. but in the end, the one place that said I had a sigmoidocele and rectal prolapse was more accurate - since the barium enema also noted the prolapse. Before my sacral colpopexy, my rectal prolapse was protruding externally - when I had a BM. Not a whole lot - but enough to freak me out - and that's when I decided to finally seek help. I had a rectopexy than as well... but either my prolapse was not pulled high enough up, or I ruined the surgery with all the straining I did.. the tests revealed a prolapse - internally. It could also be called a descent. This, along with my sigmoid colon was blocking or compressing my rectum, causing me not to be able to have a BM. I PRAY it is all fixed, but honestly - I have had chronic constipation for YEARS prior to any of this surgery. My GI said I have CI, but the surgeon said no - it was blocked, causing it to be slow.. and I hope that is the case, or I may end up having to have the rest of my colon out... but again, not going to think about it because of now. things are better then I can remember. I'm going.. and my bloating is a fraction of what it was.. and I am thinking I just might be another success story! Won't that be great.. but surely, I would love it if each one of you eventually end up a success too!
~Jenise~


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/28/2009 9:07 PM (GMT -7)   
Tracy, again - posting at the same time!! I have to say.. I don't think I have ever poo'd in a public bathroom either! When I do go away, I get extremely constipated.. where I just can hardly go. On a cruise it is the worst - I think because I eat so different it throws my whole system off. When you go to the doctor, make sure you have a list of all you're symptoms and how you have to go. I know, I know.. it is SOOOO embarrassing to talk about.. but you just have to! Hand it to him if you have to. I think I made my own case a little harder because I gave them pieces of info.. I was embarrassed, and I hoped they would fill in the blanks.. but they don't.

Here it is 11:00PM and I'm wide awake! I normally go to bed at 10:00 but for the past week, I can't sleep! I didn't even take a nap today.. yet I'm wide awake. Last night I was up past 1:00AM. I hope this is just a post op thing that goes away soon!
~Jenise~


answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 9:15 PM (GMT -7)   
Jenise, I am hoping you don't have anymore issues with CI, but hey if you do, just take the miracle Miralax. Who cares? I will take it for the rest of my life if I have to. But I did read that miralax can cause liver problems???? Have you ever read this? But it did say it won't cause the discoloration of your colon like stimulant laxatives do and that is was safe to take in large doses and everyday. I will ask my doctor tomorrow if it can cause liver problems.

I had 1 defecogram 18 months ago. All my tests were 18 months ago except for the small bowel follow through. UGH, I hope he doesn't make me get the defecogram again! EWWW Did we have to do a bowel prep before the defecogram??? I forget! I do think he should order a pelvic MRI like you had with the barium and where you sit up and they take pictures. And then I think they should suck the barium out since I can't get it out and then do more pictures to see if I have intessuption. But, I don't think all hospitals do those special MRI's.

answers4me2
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Date Joined Dec 2008
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   Posted 12/28/2009 9:19 PM (GMT -7)   
I have also been staying up too late. it is going to be very difficult for me to go back to work and have to get up at 4:45am. YUK Right now my husband is alseep and my brain is just ticking about what to ask and tell the doctor tomorrow. Ya'll are the only ones who I can talk to since nobody else knows exactly what the problem is. All of my friends think I just have simple constipation. If they only knew!

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/28/2009 9:55 PM (GMT -7)   
Lizzie, I have been researching and found this...

Obstipation is severe constipation caused by intestinal obstruction, which may be acute or chronic, partial or complete. Constipation, abdominal distension, painful cramps and vomiting are main symptoms. Obstruction of the intestine may be caused by a polyp, cancer, scar tissue (adhesions or strictures) developed after surgery or inflammation, volvulus (intestine twist upon itself – congenital defect found in infants), intussusception (telescoping, when one part of intestine slips into adjacent part; found in infants and young children), hernia, gallstones or foreign bodies. Certain diseases, like scleroderma, lupus or amyloidosis, can affect motility of the colonic wall. Ultrasound can detect excessive stool within the intestine. Obstipation has to be solved quickly by operation to prevent bowel perforation, bleeding or infection.

It sounds like you could maybe have something like this to me. I did watch mystery diagnosis recently and this poor lady would get very sick with vomiting and she ended up being dx with intussusception! She had several xrays, mri, ct scans, etc. This went on for a few years. Finally a doctor did another MRI or a ct scan, I don't remember which one, and they actually SAW the intussecption. She had survery and is now fine and normal with no more vomiting. I am so worried about you. How you are working I have no idea, but sometimes it is easier for me to work because it keeps my brain off of my problems.

coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 12/28/2009 10:18 PM (GMT -7)   
Jenise my bowel movements vary from skinny to watery to actually having some consitency. It varies widely from day to day. I am with the others I would not start fiber yet.

I go to the doctor tomorrow and am really worried I will end up in the hospital to get fluids and possibly nutrition. I have been throwing up a lot lately. I threw up a lot yesterday and today I had some pb crackers and thats it and I threw that up. I can tell I am getting dehydrated. I am losing weight again and feel very weak. If things don't change I'm definately going to need fluids. The colectomy surgery I feel is a success but my gastroparesis is far worse and is causing all kinds of problems. I do still have terrible lower back pain and incision burning. Don't know what the surgeon will do tomorrow. I am sure he wants to pawn me off on my gi docs but I don't see them until Monday. If I can't eat or drink by my appointment time tomorrow at 1:30 he will have to send me to the hospital for fluids. I already have the dry mouth and chapped lip thing going on. Just seems like I get dehydrated so easily.

I saw pics of Lizzie's belly and talked to her for awhile on FB. She definitaley needs help NOW! I am really worried for her. I really hope the doctor listens to her and for pete's sake all he needs to do is look at her stomach.

Jen

esoR
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Date Joined Jan 2007
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   Posted 12/29/2009 4:04 AM (GMT -7)   
I went to bed early and then woke WAY TOO EARYLY. I forgot to change my estrogen patch and that really throws me. So it's about 5:30 a.m. here and I need to type this then sometimes I can go back to bed. The friend I am going on the cruise with keeps wimping in and out of the deal. yesterday when the luggage was picked up she did not have hers ready. Three months ago she said she wasn't sure if she wanted to go. If she backs out Jan. 7 when we go to meet the train I will be circling S. America alone. God, hope I stay OK more than ever if that is the case. I dehydrate at night and takes me hours to start peeing in the A.M. Right now I'm real hungry but gotta wait because I need to change my bag in the later a.m. and it's sooooo hard to do it guts are active, though active is a GOOOOD THING.

Lizzie, take those pics of your stomach to your doc, as Jen says they must really be something.

Jen, sorry you are not doing well. What was the experimental drug Jenise was given for ileus prevention in the hospital? Could your worsened gastroparesis still be actually some long lasting ileus. You deserve to feel better than this. Prior to my needed ileostomy surgery I had normal hunger (I mean really hungry due to not being able to eat for 13 months.) But now I fill fast. Either my stomach shrank or more and more surgeries can actually cause gastroparesis. Actually at Mayo prior to the needed ileo I had rapid gastric emptying. It may still be. Ironically fast and slow gastric emptying can both give bloat etc. Luckily so far mine is just early satiety. But I think when I get back from the cruise in March I will ask for a gastric emptying study. With accelerated gastric emptying you are not supposed to drink with meals but just between meals. With slow gastric emptying you are supposed to drink with meals. So I need to know what I got. I think each time we have a surgery the nerves to our stomach get screwed up.

Tracy, trip is Jan 7 - March 17 and I will have internet access. So I will plan to pop in now and again. I'm so hungry now that I may just have an early breakfast and do that bag tomorrow. Trust me the bag is not great, but I was going to die without it due to all the gut scarring from the unneeded 2006 surgery. BUT I'm glad I did not have to make the choice whether to get it or not like you. I don't know what I would have decided. It's not awful, it just takes planning. Like if you have caffeine coffee and orange juice be sure you have access to a bathroom. especially when it is new and your small intestine is still super active. In time it slows down a bit to act more like a colon, but one trip I was on I actually had to tell the tour guide I had an ileostomy and had to empty my bag right away. Luckily she knew what the heck it was and got the bus driver to stop at a bathroom right away. I think she didn't want a mess in her bus. Smart lady.

To prove how OK I was in the beginning, yes I could even poo in public restrooms. I remember one time at the Dallas Fort Worth airport, I got the urge while waiting for a flight, got a coffee and orange juice and took a huge poo right in the first stall in the bathroom. So what the h---- was all that 2006 surgery about. I obviously did not have any bad or redundant colon. I think my symptoms were just stress in 2006----was caring for my mom, for an aunt, working and communting 60 miles per day. Apparently I had a rectocele, but the reviewers all said it emptied. So my atty is right, the real reason for my intermittent incomplete rectal emptying may never be known. All I know Is I was very healthy. It creeps me out that my 2006 surgeons saw my sigmoid was not redundant and removed it anyway, then just basically did what they felt like with other procedures, no leak test, and no follow up. In their responses to my suit, they did not even remember me as a patient by name. That is freaky. I don't think those 2 view people as real.

To my knowledge my tribunal has not been rescheduled but I may call and ask today. This whole suit thing won't get my body back but it is still important to me as I want to at least make those two docs pause and THINK before they do unneeded and some unconsented surgeries on people again. I really wonder if they are totally devoid of a conscience. Do people exist that are like that or did they just get all caught up in this gotta make money thing? All $2000 of it big deal.

Anyway, cruise goes out of Ft. Lauderdale, through Panama Canal, down the west coast of S. America, to antarctica, up the east coast of S. America, and back to Florida via Barbados and a few caribbean islands.

Well, back to bed then I gotta force myself to bathe, shampoo, change bag, and get out and do errands.

My big fear of course is readhesion obstruction and so far so good that has not happened and may not. BUT I also wonder how is it possible to live without the use of the colon as that is what draws water and electrolytes back into the body. But many of you have no colons and are doing OK. One lady I know has been without her colon for 40 years, is 75 and is still going strong. So, I guess it is certainly possible. It just blows my mind.

Good luck to all, Rosemary

tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 12/29/2009 6:04 AM (GMT -7)   
Wow Rosemary - what a trip you're going on! Won't your friend lose all here money if she cancels a this point? I'd love to take such a cruise someday.. sounds wonderful! I know the adhesion are in the back of your mind (and mine too to be honest) but we just can't think and worry about what might happen, because if we are all lucky enough - it will never happen, and than all our worry was for nothing!

That trial medication I was given is called ENTEREG. The nurse left the pill package and I kept it to look it up. They were also giving me another pill to help my stomach.. but I never saw the package and even though I asked all the time what the name was - I never wrote it down, and now I can't remember!

Jen, I'm so sorry you are still struggling! I can't believe that after all you have been through, now you struggle with severe gastroparesis! Let us know what happens at the doctors tomorrow.

Tracy, good luck today! I think you'll need another defecogram.. and I did have a pelvic MRI, however, the doctor (my uro-gyn) is an expert in reading these, and I don't think many women have them - even with pelvic prolapses like we had. I was lucky to have this doctor.. but that said, they didn't see much on the MRI - but it did slow my sigmoid looped over he mesh - which could have added to my issues.

Lizzie, I want to see your belly! Anyway, it sounds just awefl, and as bad and sick as you get eating - you must eat before your appointment - they have to see the way you get!

Again, I didn't fall asleep till after 1 AM.. I don't know why - I should be exhausted!
~Jenise~


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/29/2009 8:11 AM (GMT -7)   
Thanks for the med names Jenise. Yeah, the friend will lose a bundle if she cancels. But hoping I stay well, I will sail on. You're right about wasted worry; I gotta put this adhesion thing out of my mind and just enjoy the present. As that's what it is a present.

Lizzie, post the pics, let's see your belly. Be sure and bring them to the docs and do the live demo. Though you will then feel awful, but he needs to see this.

Good luck. Rosemary
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