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ATTENTION ALL BAGGIES

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Posted 9/19/2007 10:24 PM (GMT 0)
Ok, I have to throw my 2-cent in the mix. I just turned 33 and had to get a perm bag 5 weeks ago. I DID NOT expect this to happen. I went to see my GI dr one day and he made me go to the hospital. Over the next couple of days, the dr's discussed what to do with me. After 10 days in the hospital it was decided that I needed a bag. I was overwelmed with emotion and questions. I teach exercise classes and all of my shorts and pants are fitted. I wear low cut tight jeans and t-shirts. I wearing running shorts with a shorts bra which exposes my tummy. I did not want to give up my lifestyle.

So, here I am 5 weeks post and I AM wearing my jeans! I went to my fitness class today and wore a pair of black biker shorts. No one could tell I had a bag on. I go running in the mornings with my running shorts and sports bra...yes, my tummy is still exposed. I even found a two-piece bathingsuit to wear at everythingbu***er.com. Here is the link http://www.everythingbu***er.com/cart/customer/home.php?cat=460 I got the skirt/bathing suit bottom that has the belt buckle on the side. This buckle helps hide my bag if it fills a little. The bathing suit goes right below my navel.

My point is, you can have a life! I have NOT changed my life a bit...not even my sex life (I am a married woman after all). If you REALLY want to know what I do for my sex life, I'll tell ya, but I do not want to share too much unless you have some great desire to know a trick I created.

I sincerely hope this helps. I truly know how tough an ostomy can be IF you let it get to you. If you can stay positive and laugh at your self (even when you have poop running down your leg in the middle of Wal-Mart), you will be better than ever!

Best Regards,
Amey
Posted 9/19/2007 10:28 PM (GMT 0)
Oh sheesh! The forum edited the website I sent. Lets see if it will take it this way...

everything but water . com

Put those words together for the url
Posted 9/22/2007 1:20 AM (GMT 0)
Well guys, here is my scoop. On Tuesday I blacked out at work so my boss took me to the local ER. They checked my blood levels and my hemoglobin had dropped from a 9.5 to an 8.9 in one week. They dismissed me and that was it. No IV no nothing. I called my new doc at the Cleveland Clinic and he was NOT HAPPY that the local ER did not monitor me or give me anything so he wanted me to come to the Cleveland ER (which is 4 hours away from where I live). He said he wanted to monitor me and run his own test. Called back 10 mins later and said bypass the ER and go straight to registration because YOU ARE being admitted.Soooo.....

On Wednesday I had a chest x-ray, abdomen x-ray and cat scan.
On Thursday my hemoglobin dropped to a 7.5 so I got 2 units of blood.
Today (Friday) I had a colonoscopy this morning.

And the verdict is........my small intestine is a happy healthy intestine.
The colon.....not so happy...in fact it is the evil step-sister of intestines.

My surgeon came in at 7:30pm and told me that if he could get ahold of my GI doc by Sunday, he wanted to plan to do an ileostomy bag on Monday.

Which is why I'm here. I needed to re-read all of your thoughts and comments to get my confidence and positive state of mind built back up for Monday. Thank you so so much for taking the time to reply and comfort me with your stories. YOU GUYS are truly the ones getting me through this.

Amey--you could have not picked a more perfect time to put your 2-cents in :) Thank you, thank you, thank you!!! You did clear up all my final hesitations and not good thoughts and feelings. You are a Godsend!! :)

And as gross as it may be---I lost 21 pounds back in May and got down to 109 pounds, so rather than buy all new clothes I went to the local Goodwill since I did not know where my weight was going to go. Well, I ended up pooping my pants, went to restroom, cleaned up and decided I wasn't letting CD control my life so I continued to shop at the Goodwill with poop stains on my pants until I was finished!!!

I mainly wanted to ask YOU ALL for prayers on Monday and through next week and I will return when able.

Thanks again!!!
Posted 9/22/2007 2:04 AM (GMT 0)

Hello Hayleybaby -

I'm so sorry you are having such a rough week.  But I will have to say that I am so glad to hear that you are at the Cleveland Clinic, but I am very biased.  That's where I had all of my surgeries done, with Dr. Victor Fazio (who, I hear, is the head of the dept now) performing all of them and my final ileostomy surgery in 1984.  It is a huge facility, you are a long way from home/family/friends; but let me assure you that you are in very good hands there.  They saved my life.  Keep in mind the number of these type of surgeries that they perform.  I know this is a scary situation, somewhat expected, but definitely caught you by surprise.  You have done some research on the subject and are knowledgeable about the surgery itself.  You will be just fine.  I am so proud of you doing the necessary research prior, asking questions on this forum, and communicating so freely with all of us.  You have taken advantage of all of the tools available to you so far.  What more can you do?  How about look forward to getting rid of the pain and embarassment of running to the bathroom and feeling horibly awful all the time?  And goodbye to all of the drugs, and reactions to the drugs you are allergic to.  It took me a while to wrap my brain around it too.  I am so happy that I am now healthy.  You will get there.  Just keep your chin up.  Let your brain be a sponge and soak up all the info the docs tell you.   The ET nurses are really helpful too.  I will be thinking about you and praying for a successful surgery on Monday.  Please keep us posted and updated on your recovery.  (And I will be sure to check this forum several times over the weekend, if you want to talk, or have any other questions.)

Posted 9/22/2007 2:10 AM (GMT 0)
I wasn't letting CD control my life

that's the way to look at it!  and once your evil old colon is gone, it really won't be able to!

 

Posted 9/22/2007 9:03 AM (GMT 0)
Haleybaby,
That is good news that you have a healthy small intestine. You are going to feel great, once you get rid of that evil step-sister large intestine! I will definitely keep you in prayer for your surgery on Monday.
(((HUGS))) Cecilia
Posted 9/23/2007 2:17 AM (GMT 0)
Hayleybaby,

I am glad my words and experiences could be of some help to you. If you go back in this forum, you can read all of the comments these wonderful people made to help me when I was having my surgery. Everything they said to me has been true. My life has not changed except I seem to poop on myself every couple of days, but you are already experiencing that....LOL. I can COMPLETELY understand how fightening this is for you. Please post any question you can think of and I will try to help you. I would not give my bag back for anything. When I was sitting in the hospital Cecilia sent me the top 10 reasons I SHOULD get the bag. She was correct on every point she made. I wish I could located that list and copy it for you, but just know that you will heal, you will feel better, you'll probably poop on yourself once in a while, but at least you'll be healthy while your doing it :o)
Posted 9/23/2007 2:35 AM (GMT 0)
Amey,

I found the Top 10 list under Total Colectomy, Part 15.

Cecilia

 

Here's my top 10 list of benefits of surgery:

10. You will be able to eat solid food again. Pause, and think about that... NO MORE JELLO! (unless you really like the stuff and want to eat it, but I would think you'd be sick of it by now)

9. You will be able to eat meals with your family again, like homemade meatloaf and mashed potatoes with apple pie (or fill in the blanks with your favorite foods)
8. You will NOT be constipated anymore! yeah

7. You will NOT have to take laxatives anymore!

6. You will NOT be in pain anymore!

5. You will be healthy again and feel better than you have in years!

4. You will be able to teach fitness classes all day long!

3. You will be a happier person!

2. You will be a better wife and mother, because you will feel good all the time.

1. You will be able to thank God for answering your prayers to be pain free and healthy again.

Posted 9/23/2007 2:46 AM (GMT 0)

Cecilia,

Great TOP 10 list! 

I have to agree with #10 - jello.  The only time I eat jello is when I don't feel well, like a partial obstruction, or a bug!  and I do NOT eat red jello anymore.  I don't like scaring myself.

You got all of them exactly right!  So, Hayleybaby, be sure to read this list....  please let us know how things are going....

Posted 9/24/2007 12:51 AM (GMT 0)

Cecilia,

Thank you for locating that list.  It made such a huge difference in my life.  I read over this list repeatedly when in the hospital.  It helped me to stay positive while making such a difficult decision.  I hope it will do the same for Hayleybaby. :-)

 

Posted 9/24/2007 1:46 AM (GMT 0)
Amey,

I'm so glad that I was able to encourage you before your surgery and am thrilled that you're doing so well and are feeling good since your surgery. tongue

 

Haleybaby,

You're in my thoughts and prayers for a successful surgery tomorrow.

Posted 9/24/2007 1:51 AM (GMT 0)

My thoughts exactly Cecilia.  I have thought of her numerous times over the weekend.   

Hayleybaby - good luck on your surgery Monday.  Please let us know how your are doing as soon as you can.

Posted 9/29/2007 9:28 AM (GMT 0)
Good morning everyone,

It is about 5:30am(est) and i wanted to let everyone the surgery itself went GREAT! Doc took out all of my colon/large intestine and hooked me up ileo-style :) He said that this is going to be permanent and that my rectum will need to come out in the next 10 years to avoid the risk of rectal cancer.

I remember laying on the O.R. table at 4:15pm Monday and the nurse telling me he was going to give me some oxygen then.....BAM.......next thing I know it is 7:00am Thursday. Apparently I had a rough time after surgery as far as pain, discomfort, and severe nausea and the only thing they could do to keep me comfortable was to keep giving me phenegren to keep me asleep til all the after effetcs calmed down.

Wow, i can only imagine how coma patients feel. But here we are and its Saturday and I will be going home this afternoon and the only scripts I'm leaving with is vicodin for my pain and then a small tapering pred. script. After that its drug free. My surgeon mentioned to my mom that "the docs and medical field" need to just leave me and my body alone for the next 6 months to year so it can learn how to be itself again. Also as I had mentioned before, last week they had given me a 2-unit blood transfusion and was anticipating giving me 2 more units after the surgery, well the first transfusion took so well and there was minimal blood loss during surgery that it was not needed. Hemoglobin is a stable 11.1 and it has not been that high in over 2 years :)

All in all---what a very rough and exhausting 12 days here at the clinic, but I do see the rewards paying off already. Two consecutive nights of very peaceful uninterrupted sleep.

I think most of what I said makes sense, my thinking is still a little fuzzy (pain meds) but i will be in touch later.

Thanks again for everything, couldn't have made it through this without you because as much as family tries to understand and to be helpful, well they just don't measure up to you guys. :)
Posted 9/29/2007 12:21 PM (GMT 0)
Rachel,
I'm so happy that you're through surgery, doing well, and are going home today!! yeah Congratulations! Thanks for letting us know how you're doing. We've been thinking about you and praying for you all week.

That must've been so weird for you to go under for surgery on Monday and then wake up, and BAM! - it's Thursday!! I hope the nurses were good to you. I was also sent home with Vicodin, and it really helped with the pain those first couple of weeks. That's great that your hemoglobin level stayed high, and you didn't need more blood during surgery.

You are on your way now to really good health! It's an amazing miracle of modern science that we can live healthy lives without a large intestine. Who knew, right?!

The first thing I noticed after surgery, too, was the uninterrupted sleep. I hadn't had that in seven years, and it is such a wonderful benefit to having an ileostomy. Another great thing is, you won't EVER have to run to the bathroom again!! Unless you have to pee really bad! tongue

Once you get home, let us know if you have any questions about anything! We'll do our best to give you the inside tips on Ileostomy Care 101!! Take care, and try not to do too much once you get home. I know it will be hard, but you have to let your body rest and heal.

Celebrating with you,
Cecilia
Posted 9/29/2007 1:30 PM (GMT 0)
Such Great News!!!  Thanks for posting to keep us updated on your surgery and events at the hospital... given the circumstances, it was probably better they just kept your "asleep" for a couple of days.   I have been wondering how things went for you and you sound relieved. 

May I make one little suggestion regarding pain management?  My docs recommended that, if the Vicodin knocked me out too much when I took them as directed, just to take 1/2 the dose in 1/2 the time.  So, instead of taking 1 pill every 4 hrs., take 1/2 pill every 2 hrs. Same overall dosage.   It really helped me maintain some pain control, and yet not sleep thru an hour or so of each dose.   Just a personal hint......  it may come in handy when you get home.

Please let us know how you are feeling, day by day.  Don't expect tooo much out of yourself.  Everyone heals at a different rate.

 

Posted 9/30/2007 2:37 AM (GMT 0)
YAY glad to hear things went well
Posted 9/30/2007 3:36 AM (GMT 0)
Hey! Congrats on your successful surgery. I'm glad things went relatively well. As you learn to take care of your new friend the bag, make sure to ask the wonderful people here when you have questions. They have helped me sooo much already. (I had my surgery August 24th.) Maybe I'll even be able to answer a question or two! (So far, I've been doing all the asking!) Happy healing, and keep us updated!

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