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Posted 2/1/2012 6:09 PM (GMT 0)
They want to do an ileostomy, put in a picc line and give me tpn. I want none of this and all my nightmares about this stupid disease are coming true. I don't want a bag if crap hanging off my stomach for a few months or at all. Im 24 and this is pretty much te beginning of more and more surgeries. shakehead shakehead i hate everyone telling me its ok. Its not happening to them and they wont have to deal with the stupid bag
Posted 2/1/2012 6:24 PM (GMT 0)
Oh Andi, I am so sorry! Can you get a second opinion, or is this your only option? I thought they had surgeries where you don't need a bag? Is that temporary or permanent? I know you might not be ready, but maybe you should check out the ostomy site....they will have way better advice than me. The most important thing is to give you back your life and get you out of pain so you can start living again with or without a bag. But you deserve some time to feel devastated. Just make sure you feel confident that you have all of the best medical advice and that this is your best option. Keep writing....I'm thinking about you!
Posted 2/1/2012 6:26 PM (GMT 0)
Go for the PICC line and TPN. That provides total bowel rest and as much as I HATE even suggesting prednisone if there is any chance that the narrowing or stricture at the terminal ileum is due to inflammation rather than scarring the pred should "kill" the inflammation and thus reduce the swelling and widen the narrowed area. Its worth asking your doctors about. Meanwhile get a second opinion whilst on the PICC line and TPN.

I obstructed (and they said perforated) and was hospitalized for 6 weeks on total bowel rest before my resection and I credit that for my 20 year remission of disease activity. Surgery when there was no disease activity going on is what I believe was responsible for my wonderful 20 year remission after the resection.

Posted 2/1/2012 6:46 PM (GMT 0)
I agree with CrohnieToo. TPN is an excellent choice for inducing remission. And a temporary ileostomy is not the end of the world. Seriously. You just got diagnosed, but you did not just get sick. There are serious challenges ahead for you, yes, but if you can knock this inflammation back and get yourself healthy, there's no reason you can't have a long and happy remission.
Posted 2/1/2012 7:48 PM (GMT 0)
I dont seem to have much of a choice because of small perforations leaking air caused by the inflammation. Ive been on prednisone 30mg or more a day since november and remicade. I dont have time to wait and see if maybe another group will see me... If i burst i'll be getting an emergency surgery anyways. I HATE this. I just wonder why me and why didnt i even get a chance to accept the disease let alone all of this... I should have just went out an done everything like drink my liver away like most ppl i know do on the weekends and eat horribly. No, i tried to do the right things and take care of myself and look where it got me.
Posted 2/1/2012 8:53 PM (GMT 0)
It's hard to have a chronic illness. It's hard to be sick and in pain. It's not fair. I hear you.

But thank goodness you started out with a healthy diet and a healthy liver. Those facts will get you far, even with this setback.

Nothing you did caused this illness. It is not your fault.
Posted 2/1/2012 10:22 PM (GMT 0)
Hi Andi,
I think all of us who have had serious flares go through some amount of grieving, which includes all of the "why me?" stuff. You have been through so much agony in a very short amount of time and you're right, you are very young and definitely don't deserve any of this. Kazbern is right that because you are healthy otherwise, your body may heal faster, but I get how overwhelmed you must feel. I was standing in line at the grocery store watching a fairly thin middle aged man buying horrible unhealthy food like pulled pork, donuts, a bunch of processed food etc. I thought to myself," Good God, is there anything at all healthy in his cart?" Then I found myself getting jealous, which I know is beyond ridiculous. It doesn't do any good to try to make any sense out of this. This has nothing to do with you being a good responsible person.
So what's the immediate plan? Are they already scheduling surgery? Is your hubby and/or good friends able to spend any time with you at the hospital? We are all pulling for you. Please hang in there. Your life will get better. I promise.
Posted 2/1/2012 10:40 PM (GMT 0)
Hi Andi,

Sorry to hear this news. I had the "bag" for 4 months when I was 20...and like you I thought it would be the end of the world. But honestly, it is not as bas as it sounds. You can't see if while you have clothes on and you don't have to run to the bathroom and be in pain while you have it! It will take some time to adjust to it, but overall its not bad. I promise promise promise! Just knowing its "temporary" helped me a lot. I will do my best to answer any questions or concerns you have! And I HATE when people who have not been thru it try and tell you it will be ok...I am sorry you are going thru this:(
Posted 2/1/2012 10:44 PM (GMT 0)

Andi87 said...
They want to do an ileostomy, put in a picc line and give me tpn. I want none of this and all my nightmares about this stupid disease are coming true. I don't want a bag if crap hanging off my stomach for a few months or at all. Im 24 and this is pretty much te beginning of more and more surgeries. shakehead shakehead i hate everyone telling me its ok. Its not happening to them and they wont have to deal with the stupid bag

I understand how you feel.
Posted 2/1/2012 10:50 PM (GMT 0)
A huge hug to you, Andi. And no, it's not fair.
Posted 2/1/2012 11:34 PM (GMT 0)
Thanks guys :) they are leaving it up to me to tell them when ready for the surgery and then they'll schedule it. They had the ostomy nurse visit and talk to me. It doesnt help much at all. My husband is here. I dont want other people visiting because i get annoyed when people ask the same questions over and over and i dont know the answers anyways.

It just seems to be the inevitable and do i just say f#*k it and schedule it or thonk about it, let everything brew and schedule it later?
Posted 2/2/2012 12:05 AM (GMT 0)
Andi, have you thought about going over to the ostomies forum and talking to the lovely people there? Quite a few of them are Crohn's patients and have been through this process, so may be able to answer your questions better than we can, here.

(That doesn't mean stop posting here; it just means that they are an extra group of people that you can talk to).

Ivy.
Posted 2/2/2012 1:14 AM (GMT 0)
Andi87, I'm so sorry. I've not totally been in your shoes, but I can understand the emotional pain you are going thru. No, it's not fair. I've come to the conclusion life is not fair.You said you " I just wonder why me and why didnt i even get a chance to accept the disease let alone all of this.."...I know how you feel in that regard and more.I started out with all of what I have in about 1995 and it's been downhill since then and for me, due to heridity, it may very well keep on going.At least you still have your family and husband and friends, many do not have those who will stand by them. Because of GERD, Gastritis, Galbladder disease, Chronic diarrhea, Celiac, possible Crohn's and Pancreatitis, the inabitly to go any where less than 5' from a bathroom, never being able to go out to eat, I have I lost my carrier, my children, my husband, all my friends, my family, any money or savings I had, my home, and so much more and it goes on from there. So as lousy as this sounds...and truly I know it does....at least you still have your husband and family and friends. As angry as you are, try your best to be thankful for those things and cherish them as long as you are able to hang on to them. Really I do feel for you. For what's it worth, the feeling "why me"...I've been there and and I know it could be worse for you. I know it will take a supreme effort, but try your very best to put a smile on and look for what ever is good.That way people will be more comfortable around you and more willing to stand by you....IMHO {{{ Jannet}}}

Post Edited (2Hawaii) : 2/1/2012 6:19:44 PM (GMT-7)

Posted 2/2/2012 2:01 AM (GMT 0)
I dunno what to say to you, Andi. I at least has a few years of grace before this disease started kicking my arse, but you have been hit brutally from the beginning. Honestly, I find it hard to cope and I've had years to get used to things downhill; it's hard to imagine what it would be like if I had been hit with all this crap almost literally out of the blue.

I suppose in some ways 2Hawaii has a point: as bad as things can be, they can always be worse. I personally think that scares me more than it comforts me, but it is true. My sister-in-law made a similar point this evening by talking about a couple of folks with appalling degenerative diseases. Won't describe them and depress you further, but I would rather have what I have than what they have!

Anyhow... cold comfort to say the least. Best of luck with whatever happens... :-/
Posted 2/2/2012 1:46 PM (GMT 0)
Andie,

I wish I could say that I know what you are going through...but I can't.  I also have had the DD from a young age.  I started when I was 15.  Missed my last 2 years of High School because of Crohn's.  I have also gone through the "why me" stages.  I have been flaring pretty bad lately and again have been asking the why me again.  It is a lot to deal with and I know when surgery gets thrown into the mix...it can be very overwhelming.

Remember this.  First off, you have a husband that loves you and cares about you.  You have some support there.  Second, you are not alone.  As you can see there are a lot of people on here to help support you.  If you haven't already, look for some support groups in your area.  I don't know where you live but in the US and Canada there is the Crohn's and Colitis Foundation that run support groups.

It is always hard to see the silver lining when you are sick.  You do have a lot going on and it is tough.  But remember, you will get better.  Also, you can still live the life you want to.  Having a bag wouldn't be the end of the world.  I think it does take some time emotionally to get used to it but you seem like your a tough person and can power through it.  And remember if you ever need to talk...we are all here to listen and offer some advice.

Feel better and good luck.

Posted 2/2/2012 2:10 PM (GMT 0)
Hi Andi,

Everyone is different, some people are able to put the surgery off, some aren't. I would love to chat with you if you have time and are interested. I personally don't recommend putting the surgery off and letting it brew. That could lead to emergency surgery and even toxic mega colon. I would take a few days to really think it thru. Before my surgery, the only person I talked to was a 65 year old woman who loved her bag because she didn't have to get up and miss The Price is Right to go to the bathroom (seriously she told me that numerous times). All I could think about was, I am 20 years old. I don't give a s%it about tv. I want to be out with friend, go to the lake, finish college and I don't want a bag of poop attached to me. Well, I ended up getting really really sick and had to have the surgery. Waking up the next day was pure hell! The pain from being cut clear open and having this foreign object attached to me that made funky noises and had green output. But I eventually got used to it and it turned out to be more of a blessing than a curse. I was actually able to do most of the things I wanted to. I was able to be with my friends more and go back to school bc I was not always running to the bathroom or lying in bed from all the pain. I was able to do pretty much anything I wanted, except for go to the lake for those 4 months.
Anyways, sorry to go on. I feel so bad for you. And while everyone's situation is a little different, I think I really do know mostly what you are going thru.
Everything will be ok! Please let me know if you want to talk more. Thanks:)
Posted 2/2/2012 9:11 PM (GMT 0)
The ostomy nurse told me that i'd be able to eat whatever i want with a ileostomy. Is this true?... Or will i still have to be careful of what i eat? All my diseased area would be taken out... This is such a crappy thing to agree to do but there isnt any other choice at this point according to the docs. I dont know why i cant just say schedule it an be on my way because anyway i look at it, its gonna happen. Im on tpn now and i dreaded that. Got a central line, dreaded that. The bag... I cant wrap my head around.. All i want is to eat normal and thats the only way it seems it will happen.. :(
Posted 2/2/2012 9:16 PM (GMT 0)
Hi Andi,
Is the bag temporary or permanent? How are you feeling with the the central line and tpn? I don't have any answers to you questions, but I've been thinking about you. Check out the ostomy site...you may find more info there. Take good care.
Posted 2/2/2012 9:46 PM (GMT 0)
Andi,

You can pretty much eat whatever you want with the bag. You might find some things are easier than others. But overall, I don't recall having many limitations. You just have to remember the stoma opening isn't very big. So just chew chew and chew! I do remember eating my first spicy food and it did burn a little coming out of the stoma. I don't regret having the surgery at all. Hope this helps a little.
Posted 2/3/2012 12:20 AM (GMT 0)
I'm not going to give you any advice on an Ostomy, but do do the TPN. Give your guts the rest they need. Most of the members here who have done TPN report some to very good improvement.

And again..

<<<<<HUG>>>>>

Sincerely,
Matthew
Posted 2/3/2012 2:45 AM (GMT 0)
I think I can relate to your mental status. I won't bore you with all my details, but I am a medical failure, have dr's that don't want to do anything. The area that I have trouble with is not a good place to operate ( huge bleeding ulceration in the duodenum), getting blood transfusions monthly. I could perforate too and emergency surgery would be a mess. I don't want to compare, just letting you in a little.

I want to give you advice, but all I can say is, one day at a time. this is how I have been dealing with things and it is helping. Of course, I have days of crying still and WHY THE F(*&K ME days. I keep myself busy. But right now, the kids are quiet, husband is out, and I am left with my thoughts.

It is a dark place where the mind goes at times, but we need to just make it through the day, because after a good nights sleep, there is a good chance tomorrow may be better.

Good luck with YOUR decisions, and I hope the best for you.
Posted 2/3/2012 2:46 AM (GMT 0)
It'll be temporary thank god... I am on tpn, i dont feel much different at all so far. My arm is sore from the PICC line being placed. They are letting me have clear liquids which im surprised they are, but i dont even bother to eat/drink most of it.

Im scared out of my mind for tomorrow to tell them to schedule me for the surgery... Might as well close my eyes and get it over with... I don't have a choice and im tired of being in pain. All im dreaming about are the foods i'll be able to eat again hopefully soon... I want to be able to gain weight and being able to eat again is the main thing i keep thinking about. Just get better.. Just to feel better..
Posted 2/3/2012 2:58 AM (GMT 0)
You are on the right track and hopefully you will feel dramatically better! Without the ostomy you may have spent more months disabled and in misery. I hope all goes well and you start to feel better soon!
Posted 2/3/2012 3:52 AM (GMT 0)
Ooooh i havent gotten it yet... Im scared s&$@less about it. It'll probably be done next week... My anxiety is through the roof already about it. It is either this, the same thing as an emergency surgery, or lay around and wait to well yeah..

You guys are an amazing source of support! Thank you so much! I've cried more the past two days than i have ever it seems. It's scary and worse because theres no choice really and just got hit with all this with no warning... The disease or the microperorations.

It's going to be a struggle. Im scared of the pain. Will the new ostomy hurt when stool comes out is the biggest fear.. Well that and dealing withthis gross looking thing on my body.
Posted 2/3/2012 3:55 AM (GMT 0)
Yeah, you have a lot think about, and even though you are very upset, you are making good, logical decisions. Try the best you can to take things one hour at a time and deal with things bit by bit. I know you are doing the best you can. Hang in there!
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