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Lizzie, Alli, Hodaya?????

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Posted 12/30/2010 12:37 AM (GMT 0)
Just wondering how Lizzie, Alli, and Hodaya are doing.  Am guessing Hodaya is well into her new job and happy.  Hoping things are going along for Alli in her pursuit of ileostomy, and praying Lizzie finally has a successful recovery and can get on and enjoy her life and put all this behind her.

Rosemary

Posted 12/30/2010 11:49 AM (GMT 0)
hi Rosemary,

thanks for thinking of us :) well i've been really down lately.. quit my new job reciently, it's not working out as i thought. looking for a new job now. social security are giving me hard time with approving my request. just sitting at home makes me so depressed.

my stoma is retracting more and more, it's all at the same level as my skin now, making it harder to take care of, but still ok with convex. my small intestine is really slow and if i don't take anything to stimulate it, i'll have about half a bag for a whole 24 hrs - almost nothing comes out to the bag w/o prune juice/pear juice. it really bumms me cause the whole purpose of all my surgeries was that i won't have to worry about having to make the stool come out and now, even with the ileostomy i'm still so constipated. and the drs' attitude is what breaks my heart the most.

but i'm doing ok, cause i make sure to drink lots of pear and prune juice to release the pluggings, but i'm scared that one day neither will help. the affect is already less than what it used to be 2-3 mons ago, so i don't know if it will last forever.

anyway, that's how things going with me for now and i'm managing with it. good to hear from you Rosemary and i hope you're well.
Posted 12/30/2010 7:56 PM (GMT 0)

Hi Hodaya

Wow!  Sorry you have not had the success I assumed you did.  What is this with retracting stomas?  Gilda had her ileostomy and her stoma retracted too.  Good God!  Sorry to hear of your gut slowing down so much.  My output has slowed over three years and I never had a transit issue to begin with.  If I have too much bread or pasta I have to blast it through me with grape juice or chocolate or hot tea.  I actually had 2 mashed potatoe back-up's after only 2 years and luckily I washed them through with tons of hot tea and walking.  I eat really bland and try to avoid starch.  I do a lot of sugar and have gained.  Need to watch that.  But overall, I can't complain.  Am still out to sea on a ship, due home Jan 5.  Hope you get a job you like.  Rosemary

Posted 12/31/2010 6:27 AM (GMT 0)
Lizzie, Alli, and Hodaya, Rosemary,  Gosh Hodya, even with the stoma you still can't poo...so sorry to hear that.  I have a friend who has had one for over 30 years, got it when she was 19 because of Crohns, and she says mashed potaotes, corn, and banannas really plug her up.  So you might want to stay away from them.  So sorry to hear about your job.

I hope that all the other ladies are doing well.  As for myself as I said a few weeks ago my anastomosis had narrowed at both ends and they had to take me into surgery to do a dialation proceedure on me to open them back up.  But that wont last long so I am scheduled to see the doc in Jan 11 and then a colonoscopy a little over a week from that, to see if I have a problem further up...and if it shrunk back down.  If so have to have another surgery to do something permanent to keep it open.  So I hope and pray, that I do not end up with a stoma, but he says if it ruptures during surgery I would end up with one.

Love to all and can we all just have a HAPPY NEW YEAR ?

Love Leslie

Posted 12/31/2010 8:20 AM (GMT 0)
Rosemary, yeah it's frustrating, unfortunately loop ileos do tend to retract.

sweet Leslie.... so good to hear from you. i'm so sorry to hear about the narrowing :( i hope it works out for you and you don't need a stoma.

thanks for your sweet words. i actually stick to the low residue diet and heaven forbid do i touch bananas, rice, corn or mash potaotos..... i don't dare eating those. but it's amazing, cause even if i'll have only a liquid diet, it won't come out w/o prune/pear juice :( i don't know what the heck is the deal with me and i'm so scared prune/pear juice will quit helping me, cuz then i'll be really miserable.
Posted 12/31/2010 5:21 PM (GMT 0)
Hodaya
  Gosh are you planning on seeing a doc?  Sounds like you might have a obstruction ie, scar tissue or poo, that is holding you up like that.  I pray every day for all my friends on here and around me who are suffering.  Bless you in this coming New Year babe...Love Leslie

PS. Not starting out the day very good have to go to my best friends mothers funeral.  So got to press my good suit, got to run..

Posted 1/2/2011 1:24 PM (GMT 0)
Hi everyone.  I just want you to know that I'm keeping up (though not posting) with all of you and that I keep you in prayer. 

Not much new with me - I'm still very happy with surgery but cannot eat many things.  The other night I had a salad (just iceburg lettuce) and paid for it the next day.  Still, I wish I would have had my colon removed long ago.

Val

Posted 1/3/2011 2:21 AM (GMT 0)
Happy New Year to everyone,

Haven't been on here in ages, but did text with Lizzie right before Christmas and she still wasn't doing well. I can't believe all the issues that poor girl has had.

I'm doing ok....if miralax stops working I'll be in big trouble, but as long as I take it twice a day I can deal with things.

Our entire family had stomach virus over Christmas.....a baby with the virus came to my son's house on Christmas day, and within the next 2 days 17 out of 23 of us caught it. It was brutal and lasted 48 hours, but we're all healthy now!

Hope everyone here has a wonderful 2011:)

Janie
Posted 1/5/2011 7:42 PM (GMT 0)
Hi there! Man trying to find you all on here is quite a chore. Hope everyone had a great new year. Or I guess I should say has a great new year.

I am so worried about Lizzie as I am sure everyone else is. I just wonder how much her poor body can take. I feel to helpless and wish there was something I could do to make it all go away. Dang it!!

I have also been ill with some virus. No fun! Feeling a little better today. So not good when mom is sick. Everything goes to pot!!

Janie, I am the same way with the Miralax. I am seeing a new GI doctor next week and am anxious to see what he thinks of that. I also wonder if your body will become immune to the Miralax and things will just stop. I try not to worry about it but I just do not want any more problems. Oh and your little grand daughter is so cute! You dont spoil her at all do you? Was that a recent picutre on facebook? It looks so warm there. I think the high here today is maybe 15. If we get lucky. I need to start flying south for the winter. I cant handle the cold anymore!

Well, I guess we just keep Lizzie in our prayers. Maybe we all need to meet in Cleveland and go see her. Just want to scope her up and take her to a miracle doctor!!
Posted 1/6/2011 9:47 PM (GMT 0)
Hi All,

Yeah, we need some miracle for Lizzie. Is her ileo stoma not functioning? I lost track while on tour. Am home as of last night and tired but happy.

While traveling, I encountered 2 things I want to share. I had no transit issues originally, then the gut damage, and the necessary lysis of adhesions and ileo and so far so good in the main but am having to work at consistency and find the balance:

1. In Rome, I must have been given caffeine coffee instead of decaf which I asked for. HUGE output uncontrollable yellow bile filling bag every 10 mins. I was due to get on an overnight train and had to act fast. I ate 2 small dishes of peach apple sauce. THis I use to thicken if needed. IT has pectin and is from a nature food store. Did no good. So then I start taking immodium as directed, two, then one after filling every bag. Finally after 4 hours it stopped. THEN NO OUTPUT....for hour after hour. I start drinking water. Luckily NO nausea. BUT no output. Cramping starts. We get onto train. NObody speaks English that works there.

I start drinking hot tea and grape juice and stalking up and down the aisles of the train cars. NOt an easy thing to do as it it so bumpy. I start passing this concrete like output. More grape juice then more concrete. I can feel the stoma straining to get the concrete out of me.

Finally very full bag of this light brown concrete poop. It is the consistency of someone with use of their colon. I empty the bag with difficulty as the stuff was hard to milk down the bag with my hand. IT was so hard it stood up in the toilet. I felt LOTS better. There was a whole bowel full of it. I could not believe it.

Moral of story: Avoid caffeine at all costs, if taking immodium eat no peach/applesause to thicken. In fact take in nothing or just water when diarrhea from caffeine subsides.

2. The next time on the trip I got diarrhea in Rio. This time I had to fess up it was me eating too much sugar. I am now smarter. I JUST take the immodium until it slows. THen I just sip water to replenish what I lost in diarrhea. Then I do some electrolyte water with stevia and NO sugar. (Even gatorade gives me diarrhea_. Then diarrhea stops and output goes to normal.

I learned. Hope this helps others, though our bodies are sooooo different.

Hodaya, Idea for you to try. Can you drink some caffeine espresso coffee? ALso do you have sugary gator ade in Isreal? Also do you have fake sweeteners like sucrose, sucralose, galactose, anything ending in -ose gives me diarrhea. May have been an idea for me originally, but too late now.

Oh, by the way, my suit is coming along by leaps and bounds. BUT I want my old body back. A no go on that. So am working to discover the balance for myself.

Norovirus went around last 3 days on ship. So far so good and I missed it. ALL I ate today was cream of wheat with milk, DECAF coffee, OJ, Cranapple juice, and water. Too much juice; watery output, gotta stick to water.. THen I had yogurt with protein powder. GOing down for a nap. was up 43 hours in transit. No sleep on the 31 hour train coming north from Florida it was so bumpy. Back to 30 degree weather here in Massachusetts. Luggage lost but on its way.

Leslie, sorry to hear of those narrowings. Hodaya see if they can find a narrowing in you. IF not, then attack this with diet. I think a good espresso would HAVE to work for you. I began to wonder during my concrete episode if I even still possessed bile juice. I have never seen concrete poop coming out of an ileostomy stoma. BUT mine was from the peach applesauce with pectin and the immodium. Is yours concrete like this all the time? THis would drive me crazy.

Good new year to all. WIll log back on when I am more awake. Rosemary
Posted 1/6/2011 10:47 PM (GMT 0)
our dear Rosemary!!! so very happy to hear from you and welcome home :)))

well i'd like to writhe you back, but it's almost 1 am over here, and i have to get up early, so heading to bed now, but will catch up tomorrow.

anyway, you def need some sleep too, g'nite! ♥
Posted 1/7/2011 12:32 AM (GMT 0)
esoR
OMG I have never herd of anyone having a hard or big stool with a stoma...you dont have a colon so that is a mystery to me, so I would talk to your doc if you can..

I thought Lizzie was out of the hospital?  Is she still not doing well?

Me I am still sick, so called my Neurologists and I told him that I thought that the new sezieur pill is causeing me grief, so waiting for a call back...

Leslie

Posted 1/7/2011 2:01 AM (GMT 0)
Yeah Leslie,
I will be mentioning the concrete stool to my ileo doc and see what he says. I do think it was the combination of immodium AND a very thickening mixture of the peach/applesauce with pectin (a thickener). Lucky it is not something that just occurs. It was triggered by my situation, but it was SCARY!!! Good luck with getting better. Rosemary
Posted 1/7/2011 2:45 AM (GMT 0)
Rosemary I hope you do well also...scary, yup.
Posted 1/7/2011 3:01 AM (GMT 0)
I had this very thickened, actual colon-like stool without any meds which could have caused it and I did eat a semi-solid "diet" (very reduced in amount and variety). I hardly could empty the bag and had to grab the stool somtimes manually with a spoon you normally use when you are told to collect stool for a stool exam..
Posted 1/7/2011 3:27 AM (GMT 0)
Peltz,

WOW! That is scary. At least mine I knew what caused it, but still with me only having the use of my small intestine, I would have thought that bile juice and other digestive juices would have not allowed it to get THAT thick. I wonder if there is something off with lack of digestive juices with both of us or anyone who experiences this? Guts are a true mystery. I know I have to avoid dense starchy things like mashed potato and pasta in quantity otherwise I have to melt it down with grape juice. And in the beginning before my gut damages which caused the need for the ileo, I had no transit issues at all. Mysterious is all I can say. Rosemary
Posted 1/7/2011 3:41 AM (GMT 0)
in my case, I know it's "just" small bowel and gastric dysmotility.
Either I have this very thick outpu and my transit is up to 20-24 hours this case or I have bacterial overgrowth due to the dysmotility; in the latter case I have massive liquid, ugly smelling output and transit is "patholgically enhanced" (for you, with three hours it would be normal then) but bacterial overgrwoth produces symptoms as well.

Post Edited (pelztier86) : 1/6/2011 8:44:18 PM (GMT-7)

Posted 1/7/2011 3:47 AM (GMT 0)
If anyone should be interested in how life is with CIP then check out my recently created caring bridge site. I don't know if you know this wonderful site. It is a health community where patients have a room for telling their stories and the development of her medial issues. You can write a journal and keep your family etc updated this way. It is somehow therapeutic, at least I started the journal for this reason,
I would be glad if you could sign my guest book.
Just go to www.caringbridge.com/visit/CIPpelztier86

Post Edited (pelztier86) : 1/6/2011 10:22:28 PM (GMT-7)

Posted 1/7/2011 6:20 AM (GMT 0)

Hi Everyone,

 

It has been awhile...sorry about that. Between Christmas, doctors, school, and general running around, it has been busy. I was able to go visit Lizzie, which was so wonderful. I was in Michigan starting on December 29. This past Tuesday I went with her to the appointment with a surgeon near her home. Dr. Figg worked under Dr. Stocchi at Cleveland, and Dr. Stocchi suggested that she see him. Dr. Figg listened to everything that was going on, and he felt that adding a fourth surgeon into the mix would not be a good idea. He felt strongly that she needed to get back to Cleveland as soon as possible, so that's what we did. We went back to the house, got packed up, and headed to Cleveland's ER. It's a five and a half hour drive, and then it was a three hour wait in the ER's waiting room before they got her in an ER bed (big time communication breakdown as Cleveland knew she was coming). It broke my heart to see her in so much pain, but it would be even harder to not be there with her. Thankfully, the colorectal surgery resident who came down to the ER asked her right away what it was going to take to control her pain. Lizzie told her, and she wrote the orders for exactly what Lizzie said, with the option to go to a higher dose if needed. That was great news because they usually take days to get her pain under control.

 

It was about 4:30 AM on Wednesday before they had her in her room, and we were able to get a few minutes of sleep here and there. One of Dr. Stocchi's residents came in at 6:00 AM and said the x-ray from the ER looked ok, but they know there's obviously a problem. A very sweet stoma nurse came by a little later to see if she could figure out how to get an appliance to adhere properly, and a dietitian also came by wanting to know how food had been going. Dr. Stocchi was in the OR, so he didn't see her until later in the day...after I had to go to the airport for a flight back to Dallas :(

 

She is having multiple problems...

- Stoma: fistula on top, a second hole (not another lumen like in a loop ileo) has formed, retraction, an area that leaks underneath the stoma, and possible ulceration at that area; situated close to her midline incision, which is a depressed area, so wafers lift off and she has to change everything every 24 hours

- Bladder: horrible pain and spasms up her midline incision with peeing; hardly peeing at all even when she drinks or when they have her on IV fluids

- Output: several episodes of bloody output, even after Coumadin for her blood clot was stopped; periods of no output and distention, indicating obstruction (even when she hasn't eaten anything that could cause an obstruction)

 

Dr. Stocchi said today that they will be taking a slow and thorough approach to solving everything that is going on. This could be a very long stay in Cleveland as they search for the root cause of the problems. Tube feedings or TPN may be necessary. Her weight is ok, but she isn't able to eat. He would like to avoid more surgery at all costs, and he said that he can't take her into the OR without knowing exactly what is going on for fear of causing her harm. She has a great surgeon on her side, and I know he will call in all the appropriate experts to get Lizzie well! He will most likely bring in urology soon- the number of surgeries she has had and the abscess after this last surgery can contribute to the bladder spasms, but they will find out for sure after more tests.

 

Please pray that they can solve everything that is going on soon, and that every problem can be solved completely! Pray for wisdom and guidance for every doctor who is involved, and for peace, comfort, and healing for Lizzie and her family.

 

I am still trying to get my parents on board with me having surgery for an ileostomy. I have an appointment with my surgeon on the 12th that my parents don't know about. I want to take that time to ask him everything I can think of, and see if he has any advice on how to deal with my parents' fears. If you have any advice, or any questions I should ask my surgeon, please post them! I was talking with the stoma nurse in Cleveland while she changed Lizzie's appliance and she said over and over again, "This is your life and your body. You are in pain, and it is not fair or right for them to delay this any longer than the over three years it has already been." The stoma nurse also had an ileo for over 20 years and she said it was the best decision she had ever made. I must have picked up a bug while traveling home...woke up with a 101 fever, aches, cough, sore throat, etc. this morning. Fun stuff :(

 

Please keep praying for Lizzie...this has been a long road, but I know she can do it and that her doctors will get this figured out. Pray that it's quickly!

 

Love to you all,

 

Allie

Posted 1/7/2011 5:41 PM (GMT 0)
Allie,

WOW! Lizzie is so lucky to have had you there to help get her settled in Cleveland. I assume you did not know her before meeting on this site on the net and for that this board is a god send. From my experience the obstructions, though she has not eaten anything, may be caused by adhesions choking off the small bowel. Even her digestive juices of which we produce much per day, can not even get through. An NG tube and bowel rest will likely solve this for the short term, but she is in so much trouble. I think Dr. Figg made a wise decision to send her back to Cleveland. I am so glad you were there for her. That stoma nurse was right, regarding your issues. It is your body and your pain, not that of your parents, friends, relatives. Here are a few questions I can think of off hand to ask your surgeon regarding your ileostomy:

1. Loop ileostomies tend to retract or prolapse. Also poop can actually slide down the back end of the loop and end up in your rectum (Hope I remember this correctly that you have your small intestine hooked to your rectum now? If you still own your colon and I'm mistaken, then the poop can actually slip back down through one end of the loop and end up in your colon, so you do not want this. )

So my suggestion is to ask your surgeon for an end ileostomy. With the end ileo they actually sever the distal ileum (end of small intestine) and bring the active end out through your abdomen to make the stoma. They just suture the inactive end to the inside of your abdomen.

2. When you get marked by the stoma nurse for placement of the stoma, they will have you bend, twist, sit, stand, and do all motions you normally do. They will mark a few possible sites for the stoma where your skin does not crease or bend. The stoma should be made right in the rectus abdominus muscle. It is the strongest muscle in the abdomen.

3. Regarding your docs ideas for how to convince your parents, etc, he could just write a brief note explaining your condition, all that you have tried and that in his experienced opinion having seen x number of patients of similar situation that you are indeed a candidate for this surgery.

4. If it is possible and you can have this done laporoscopically that is the way to go as done laporoscopically there are fewer adhesions created on the small bowel and else where in the pelvis and abdomen.

This is all I can think of. I wish you well and I'm so glad you can be Lizzie's angel. The rest of us think of her all the time, but there is nothing like her having someone right there with her. She has been through way more than the human spirit and body were meant to take. She has all my prayers and blessings as do you. Hope you get over your fever. There is a lot going around now and you no doubt got tired with the Cleveland trip so your immunities wore down. BUT you were helping a friend. Feel better fast. Good luck. Thanks for the update.

Sincerely, Rosemary
Posted 1/10/2011 1:40 AM (GMT 0)

Rosemary,

 

Thank you so much for your sweet post! Lizzie and I did not know each other prior to communicating on this site, facebook, and by phone. That friendship is such a gift, and I truly believe the Lord had His hand in it and in the timing of this last trip!

 

I don't have a ton to report...Dr. Stocchi is bringing in urology and gastroenterology to help figure out what is going on. He said that Lizzie can't take in enough to keep up with basal energy requirements, so tube feedings or TPN may be required. Because she is still so distended even with output, Dr. Stocchi thinks her small bowel has motility issues as well. She is still having trouble with appliances not sticking, so they're working on that. Stocchi also thinks that her stoma does not need a revision, even though it has a fistula, a second mystery hole, and an ulcerated area where the stoma retracts....sooooo, we'll see what happens there. Keep praying they can find what's wrong, everyone!

 

Thank you for the discussion points to bring up with my surgeon! He did mention doing a loop, and I DO NOT WANT A LOOP!!! Everything you have listed was on my list of concerns with a loop, and I feel like my rectal spasms (they currently turn my knuckles white and take my breath away) might be better if the connection between my small bowel and rectum is completely severed.

 

If I had to guess, I'd say that he would do it laparoscopically. My total colectomy was a lap operation, and my surgeon has been a pioneer and teacher in the specialty of lap abdominal surgeries.

 

Sarah,

 

I think it is wonderful that you started a Caring Bridge site! A girl I had as a lab partner in an anatomy class back in high school has one (she has ovarian cancer), and those sites really are wonderful for sharing stories, keeping family and friends updated, and connecting with other patients. I will definitely check yours out. Keep hanging in there, Girl!!

 

Hope everyone had a good weekend. We got our one snow "storm" for the year here in the Dallas/Fort Worth area, so that was fun to watch while curled up with juice, Kleenex, and Nyquil.

 

Allie

Posted 1/10/2011 2:16 AM (GMT 0)
Allie,

That is great that your ileostomy can likely be done lap because your total colectomy was. Just tell your surgeon you want an END ileo for all the concerns we and you have mentioned. You are the paying customer remember. Also tell him you want the stoma to protrude enough so that you don't have issues with the appliance. I'm sure glad I spoke up and said if mine was to be permanent (my doc and I knew it would be) then I did not want the complications of a loop ileostomy. And that is just what he put in my op report....those very words......construction of end ileostomy to prevent complications from a long term loop ileostomy. So glad I spoke up. Things can still go wrong but are not as likely with an end ileo.

Praying for Lizzie. I really believe that you are her angel on Earth. Praise this web site. Rosemary
Posted 1/10/2011 2:21 AM (GMT 0)
Sarah, Yes, the caring bridge site is a great idea. I cannot even imagine having something more complex than I do (an ileo due to internal adhesions that are for now anyway and hopefully long term held at bay). I worry if I ever have the stomach flu, it might be hard to convince my local hospital that I need an IV! Which actually any medical professional SHOULD know.

I can't even imagine the frustration you must face in trying to explain your condition. I keep a one-page typed medical history in my purse with a note from my doc saying what to do in the event that certain things happen. It is my little security blanket. Whatever works, right?

Hang in Sarah, We are all with you. I will check out your site. Rosemary
Posted 1/10/2011 2:29 AM (GMT 0)
Sarah,

I just tried to go to your caring bridge site and it says CIPpeltzier86 is not associated with a site. Couldn't get in. Just thought you would need to know. Am interested when it gets fixed up. Rosemary
Posted 1/10/2011 3:47 AM (GMT 0)
Hodaya
   Girl, that just breaks my heart to read your message.  I am so sorry that your going through all this, it is very dis-heartning.  Try and remain positive ok, I will try and look for some ans for you as well.

Love Leslie

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