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SqueakyandLiza
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August 6, 2019 11:58 pm  

At my surgeon's request, had a follow up with my GI doctor today. Surgeon wants to know how everything is looking to decide whether he is going to "rehook" me or make the ileostomy permanent. 

GI is going to do colonoscopy on the rectal stump as well as a scope of the stoma. He had an opening Friday, otherwise not until Sept 13. Decided to just go for it, rather than stress out about it for a month, so scheduled for Friday. So now I have to do prep Thursday and go in Friday for the scope. It is going to be conscious sedation, rather than full anesthesia, but I am still a little nervous. 

I'm even more nervous about the results and what they will mean going forward. Since I didn't have much trouble before getting my ileostomy, and have had a fair amount of trouble with the ostomy with leaks and the like, it has always seemed like a reversal would be best, but tonight I was reading the jpouch thread and getting apprehensive about that. I know I'm borrowing trouble worrying about the jpouch before I even know if it is an option. 

The surgeon said he is planning on a surgery either way, to reverse to ileostomy or to remove the rectal stump, and he will fix the huge hernia at the same time. My wound still isn't healed from the original surgery almost 14 months ago, so I just have a lot of worries and doubts going on in my head right now. 

I guess I just need to go through the steps and deal with things as they happen. So Thursday evening, I start drinking the nasty prep drink and Friday afternoon go in for the scope. Wish me luck and I'll keep you guys posted. 🙂

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
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August 7, 2019 3:22 am  

Hey  liza, I think that is a wise move on your part. What prep are you using?  When I had my scopes, it was Moviprep. Not bad at all really. Lemony if I remember right.

Try not to get ahead of yourself with what's going on. I know full well how easy it is to want to know everything right  up front, but try and deal with one issue at a time crossing the bridges in order of arrival.  Its easier on you that way and you'll likely sleep better.

How are you doing for leaks these days? Are things settling down?  How are things in between changes? Hows your skin under the wafer? These are a few things to consider and a few questions to ask yourself when considering a permanent ostomy. A j-pouch does not last forever and as your reading, had it's own issues as I had one for several years, urgency was a huge issue for me, ending with incontenance. Can you handle it if you have to have another surgery because yours may have failed?  If so, how soon? Can you get thru another surgery for a repeat  ostomy  and possibly deal with all you have already dealt with all over?  Not just you, how about your hubby?

Make that pros and cons list, write down your questions and if you can, and have been given permission by the doctor, record your visit and conversation to listen to again later. I would also recommend getting a cheap journal and write things down I  there for reference down the road. 

As you know, taking time to heal has its consequences. This could be the result of disease, or just your system being run down from the last illness and another surgery. Do you think your health can handle a reversal?and, what if  it may be difficult to get your rectal muscles working again, can you deal with all of that?

You have already proven to yourself just how resilient you are, can you add more to that if it is not an easy recovery? Not to try and confuse you, but these things do happen sometimes.

Your open enough to ask questions, you have a great home support system, and ofcourse, us, but what is going to be easiest on you, your career, your marriage, your life?  Figuring these things out can make it easier to decide what to do. Keep us in the loop. All the best! Stay hydrated while prepping it goes easier.

Linda


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john68
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August 7, 2019 4:28 am  

Hi Liza, The reversal is a big decision.   Linda has really given you great advice and a lot to consider. All the best for Friday 👍

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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August 7, 2019 10:38 am  

So many people have been down your path, and there is never an "easy" answer. I've never had an opportunity to get a reversal, but I can only imagine how stressful it must be. 

These appointments are a great opportunity to get feedback from your doctor and/or surgeon so you can best make a decision. As long as you aren't feeling pressured into making a decision  either way, I think you'll make the best choice. 

Good luck! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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sjlovestosing
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August 7, 2019 11:30 am  

Hi Liza,

Having decided on having a permanent colostomy because of cancer, I have not had to make the decisions you have to. Linda has brought up many good questions for you to consider, since she's  gone down this road herself. I wish you well in the decision you make. I know you will make the best one for yourself.

God bless,

Stella


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Dona
 Dona
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August 7, 2019 1:21 pm  

Hello Liza,

Wishing you good luck with the upcoming procedure and your decision. Good to get things checked up again, but never any fun.

Everyone here has given you excellent advise. Try to stay rested , hydrated and cheerful!

Let us know.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Dona
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August 7, 2019 1:33 pm  

P.S> .. PREPOPIK is another good prep for the scope. Similar I think to the MOVIPREP.

You drink less of the prep ( more concentrated) with LOTS of plain water in between . Much more palatable...does the job. ( also.. drink it cold...with a straw. Gets it past your taste buds faster).

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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SqueakyandLiza
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August 7, 2019 9:14 pm  

Thanks everyone for the feedback. Linda, your firsthand experience is so valuable to me.  I'm sure I will be asking you a lot of questions. 

The prep they prescribed me is Golytely, which is the same one I had last time. It is nasty. I can add flavor powder such as crystal light or kool aid to it to help with the flavor. 

Starting at midnight tonight I can only have clear liquids. I have to drink 1/2 gallon of prep fluid tomorrow night, a glass every 15 min. Then Friday morning I drink the other half gallon, a glass at a time. I have to be done and not drink anything else by 10:30. I need to be at the hospital by 1:30 for a 2:30 appointment. Oh, and I have to do a home enema half an hour before going to the hospital. Have to think of something yummy for dinner tonight, since it will be close to 48 hours until I eat again. 

On a more positive note, I had an appointment with my kidney doctor today. My kidneys have been out of whack since I first started getting sick early last year. My EFGR, which is supposed to be over 60 has been between 20 and 30 for over a year. Today the doctor said it was at 48!!  Actually almost everything in my CBC was looking pretty good. The doctor was very happy, as were we. So that is a piece of good news. Just another sign that I am so much healthier than I was a year ago. 😀

Thanks for all the kind and encouraging comments!!

 

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
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August 8, 2019 8:16 am  

Goodmorning Liza...Golytely eh...have fun with that one. It will keep you in a real swirl. At least with your ostomy, there won't be as much paper work to do. If you start to feel the bums rush of life and a little testy,  try not to run too fast.  Should you fall into the flow of things and feel bowled over and a little flushed don't blow a bag over it,  even if you have a certain air about you. Just know we might be a distance away, but we are here and care about you. No sneaking wafers when you shouldn't be eating anything and don't let anything run you down. Just keep a handle on things and let it all go. Have a great day regardless and Smile, be happy! :)

Linda


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SqueakyandLiza
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August 8, 2019 9:25 am  

Linda--you have me laughing so hard this morning, especially the part about the paperwork.  😂😂 Thank you!!

-Liza
“May your day be bright and your bag be light.”


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john68
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August 8, 2019 10:10 am  

Hi Liza, Faith can move mountains and those preps will move every thing else. Keep a broad smile and you can do this. 👍

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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August 8, 2019 11:00 am  

Hi Liza,

Just wishing you well. You are one tough cookie, that's for sure!

Stella


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Dona
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August 8, 2019 11:13 am  

Good luck with the prep today and the scope tomorrow. Keep your spirits up.

I remember a cartoon from a few years ago that was published in the fall. A pharmacist is asking a patient what flavor they would prefer for the bowel prep: Lemon, Lime, or pumpkin spice.

Your since of humor and some sedation will carry you far.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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LK
 LK
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August 8, 2019 1:10 pm  

Your welcome Liza. I was just trying to put a giggle in your day. You have held up thru some mighty big issues. I'm sure we all needed someone to make us laugh once in a while in ours. My hubby had a gift of making me laugh right out of surgery. Ouch. It always got me breathing deeper.

Stella is right, and you should be proud of yourself, you are a tough cookie. Just know that pumpkin spice has its place and golytely WILL also move your feet.

Linda


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IleosTony
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August 8, 2019 3:06 pm  

Liza, count me among those root root rooting for you. Wish I could come up with something funny to write about the prep but sure appreciate the chuckles from all of you.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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August 8, 2019 6:42 pm  

Thanks everyone!!  I need all the laughs I can get right now. Between work and chatting with a good friend, I have managed to keep my mind off of things today.  As the work day comes to an end soon, I will have to go home and attack the prep. The nurse said I can add a kool aid packet to the prep. I mixed it up last night and it did not smell anything like pineapple, which is what the label said. 

I'm getting sort of hangry too. Not gonna be a fun next 24 hours, but hopefully in 24 hours it will all be done. I don't know how long it will take. I am scheduled for 2:30 which is 23 hours from now. 

I don't know if it is nerves, but I've had a pain in my belly today. Feels sort of like cramps, but the timing is off for that. Started before my body realized I wasn't eating today, so can't blame it on that. Oh well. 

Im taking the whole day off tomorrow, even though I don't have to be at the hospital til 1:30, so that is nice. If only I could sleep in instead of getting up to start prep part 2 at 7:30. 

Thanks again to all of you for taking time out of your days to encourage me. I truly appreciate it. 

-Liza
“May your day be bright and your bag be light.”


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SqueakyandLiza
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August 8, 2019 8:17 pm  

I left work at 4 and went to the grocery store to find my kool aid flavor drops. I walked up and down every aisle they might possibly be on several times. Not fun for a hangry person who can't eat!!  Finally found them with some help in a very illogical spot. Also got some peach jello and beef broth (shh, don't tell Eric) for dinner.   Just took my anti-nausea pill so almost ready to start. Boiling the water for my jello now. 

Later, guys.

From your grumpy friend, Liza

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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August 9, 2019 10:04 am  

Liza, there's no possible way every one of us doesn't feel your pain. Our bodies are such a contradiction, not designed to go hungry for a long time but harboring mysterious and surprising reserves that we don't have any idea exist until we have no choice but to bust them out. Keep fighting.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
 LK
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August 9, 2019 9:24 pm  

How are you doing Liza?  Been thinking about you all day. It may be a bit hard, but go easy on the food right away. If they took biopsies, your guts will need some time to heal up  usually a day or two. So enjoy some cream soups and softer food, or foods that soften,several times for the 1st day, introducing the normal ones a bit slow. Wash the drugs out of you with extra fluids  and get some bed rest to sleep them off.  I hope you are doing well and the news is good. 

Linda


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SqueakyandLiza
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August 9, 2019 10:46 pm  

Hi Linda

Thanks for asking. I am doing okay. Last night and this morning were pretty rough, but the procedure went okay, of course I have no memory, so I'm just basing it on the face that I came through it okay. I was very groggy afterwards. Came home and slept for a few hours, after having a Boost protein shake and a lemon muffin. Still pretty tired, so will probably have a little dinner and go to bed early. 

I appreciate all the support I got here from everyone so much!!  Now it's just a matter of waiting for the results and then possibly having a decision to make. I will keep you all posted, because I'm going to need support either way and you guys have it in spades! 

Thanks again!!

-Liza
“May your day be bright and your bag be light.”


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