Hi everyone. 1st surgery next month (ileostomy!)

[littlefreebird]

hi everyone. 1st surgery next month (ileostomy!)

hi everyone, i'm new here and just thought i'd introduce myself.

i was searching for a crohn's forum as i found out a month ago i needed a permanent ileostomy. it will be the first surgery i have ever had done.

i was diagnosed with crohn's 11 years ago and the crohn's has just been up and down since then, the past 2 years have been the worst and i have not really felt well during this time, my crohn's has always been in the last part on my intestine and rectum however i developed a recto-vaginal fistula (ouch!) in feb this year and the crohn's spread around the entire large intestine.

therefore, i'm getting the whole large intestine, rectum and anus removed and getting an ileostomy.
it was a huge shock to be told the crohn's has spread and i needed such major surgery. a month later, i think i am getting used to the idea of what is going to be done and am getting less teary when family talk/ask about it etc.
was told the surgery will definatley be mid-end of july but a date cannot be confirmed yet incase it changes.

medication i've been on throughout the years include: elemental diet, modulen, steroids, predfoam, predsol, cyclosporin, pentasa, azathioprine, methotrexate and infliximab (remicade).

would love to hear from anyone who has had an ileostomy and the panprotocolectomy just things like pain and what it was like etc. i just don't know what to expect.

 

[Nancy Lee]

Hi there and welcome to the Crohn's Forum!!
I am so sorry to hear you are now in need of major surgery.
Many here have had the same surgery you are facing
and I am sure would be glad to help with any questions
you may have.

You can find our Surgery Forum here-

http://www.crohnsforum.com/forumdisplay.php?f=71

Once again welcome..
Wishing you all the best~Nancy

 

[xJillx]

Hi littlefreebird and welcome! I am sorry you are facing surgery, but you have the right attitude. You have suffered with no relief for over 2 years. After your procedure, I am sure you are going to feel better than you have in years like many others on the forum.

I hope your surgery goes well and you have a speedy recovery! Please keep us posted!

 

[semicolon306]

Welcome to the site. Sorry to hear you have to have surgery, but I can tell you it was the best thing I ever did. It gave my back my life, after I adjusted to having the bag. Get tons of samples and make sure you find one that works best with you. I also would suggest getting an ostomy armor, since it will offer protection and covers the device and lets you wear what you want. If you have any questions you are welcome to ask me, since I had mine done last June. I am more active then I have ever been, well wait I was running to the bathroom a lot before surgery.

if you have ANY questions you can either email me or PM me, wish you the best. You will do fine, just stay positive.

 

[Rayleen]

I had an ileostomy in 1994 at the age of 34 and thought the world would end. But, little did I know, my world had just started!! Relief from pain, no desperate bathroom searches and a wonderful supportive family. IT WILL be the best move you ever made!

 

[littlefreebird]

thankyou everyone for the kind welcome!!

...and thankyou for the tip on ostomy armor, i'm currently looking for armor and belts that will cover the whole bag and suck everythng in so i can still wear fitted clothes, they look like a really good idea, a definate must have! it's just trying to find a good supplier that will sell to the UK.

i'm rather excited to feel well again, i'm currently taking tramadol every 4 hours for pain and it's starting to wear off, i just can't wait to get my life back, book a holiday etc. i've been a hermit for sooooo long! hearing everyones ileostomy success stories just makes me feel more excited! i am very pleased i found this forum.
hannah.

 

[semicolon306]

I had to order mine directly from him. He ships all over the world, just takes about a month or two to get. I currently have 4 of his belts and not sure how I ever was able to survive without one before. For night tough I were the celebration belt, which again I would recommend it.

 

[semicolon306]

There is also some good information on this post about different products -

http://www.crohnsforum.com/showthread.php?t=11597

 

[littlefreebird]

sorry who do you order ostomy armor directly from?

 

[semicolon306]

Ostomy Armor -
http://www.ostomyarmor.com is the web site or you can also order by calling (719)689-0203

and here is the information for the Celebration belt -
http://www.celebrationostomysupportbelt.com is the web site or you can also order by calling (413)539-7704

 

[littlefreebird]

thankyou very much, i like the look of them both. i'll mention to my stoma nurse and i'll look into buying one of each. the one that the nurses will give me doesn't look great its like a thin piece of elastic, i think i'd rather have a belt that covered the whole thing and sucks everything in.

 

[semicolon306]

The ostomy armor covers all of the wafer, which is nice since it keeps the noises down and protects as well. This device also keeps the wafer on the skin better, since it always has pressure applied to it. I can wear a t-shirt and jeans most of the time, when not in uniform and NO ONE knows I have a device, unless I tell them, which then they are shocked. I have two of these I wear, one with the padding and one without. If you plan to wear tighter shirts I would suggest no padding, but for comfort the padding is better and with normal cloths you can not tell.

 

[littlefreebird]

so they all come with the padding inside but you just bought 2 and took the padding out in one of them? i like them, i was thinking of wearing something similar to the celebration belt during the day and the armor at night cause i sleep on my belly but i can just play around with them once the op is done. they definatley sound like a must have and thankyou so much for your advice.

 

[lostpanda]

Hi Littlefreebird, welcome aboard. This forum has a great bunch of folks in different stages of the disease. My history as with most on here involves a huge disruption of our lives and way too much pain. I had my ileostomy in 2006 and I have never looked back. Best of luck with your up coming surgery and to getting your life back. Please take care… Bob from the Foot Hills of Maine

 

[semicolon306]

I wear the ostomy armor during the day with no padding, I find the padding cause the belt to slip, well the old padding did. He changed the design and it supposed to be better. I found that the ostomy armor moved around at night for me. I also find that is cuts down the size of usable area of the bag. I will say this it is comfortable during the day and I got so secure I do not even carry extra supplies.

The celebration is nice for the night since it has a wider belt around your waist and does not move around. It again holds on the waffer, but also had a protective piece to cover the stoma. The nice thing is if your bag gets to full with substance or gas the plate will release somewhat, preventing a mess. It also has this pouch to hold the weight of the bag with everything in it. One of the best feature is you can roll up and hide the bag when it is romantic time (well so I am told, since I am a virgin) LMPO.

try then out and see what works best for you. The only recommendation I have is I would try to NOT lay on your belly. Can cause undo messes, I have learned the hard way.

 

[Hazardous?_3]

Ill tell you right now not to scare you but to warn, its gonna be hard. You really need to listen to your body. I needed an IV of water every other day just to stay hydrated. And the otsomy ungh. Dont try and change it until your ready for a bit of pain and frustration.

Best of luck

 

[littlefreebird]

Hazardous?_3.....im aware it will be hard, but at the end of the day if i dont get this done i will die so what is the point on me focusing on the negatives...sure there are tons of them, i could fill a whole notebook of why i dont want this surgery and how gutted i am that it has come to this but what good would it do?? i am a positive person so for the sake of my own mental health and for the sake of my loved ones strength i am going to continue to think positive thoughts, i dont need reminded of how hard its gonna be and how much i will struggle as i am sure i will get a chance to experience it.

i don't know how anyone else feels about your post and i thankyou for your reply but it has made me a little teary.

 

[DustyKat]

Hey littlefreebird,

I can't offer any advice about your surgery but I hear you about focusing on the positives. Both of my children have had surgery and the choice was pretty much live or die. It is all too easy to focus on the negatives but you need to focus on the positives to survive don't you?, to make the most of what you have and move on. It's hard but you have the right attitude, kudos to you!

You are in my thoughts and prayers hun...:hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[Crohn's Mom]

Keep going with your positive attitude littlefreebird..it will take you very far!

My daughter just turned 18 in March, and her Ozzie (ileostomy) was born just a few weeks after her birthday. She went in for her scheduled surgery, but we really did not expect her to come out with a stoma. Upon waking, and realizing what had happened, she threatened to never leave her room again, and not attend her first year of college this fall! She is a very positive thinker as well, and has since vastly changed her tune! Not only does she leave her room, but she is hardly ever home anymore. She has gone to 2 concerts, the beach (she hasn't attempted swimming yet), but she does wear a tank-kini bathing suit and lays out to tan with her friends. She attends parties with groups of friends. She started working again as a hostess in the restaurant where I work 2 weeks a go. And...she has attended her orientation for college and had to go 2 hours away from home, alone, to do it. She had a blast !
Hopefully, sometime in December, she will have hers reversed if her body allows the healing that it needs. However, we have not seen her this healthy, mentally or physically, in nearly 2 years. Ozzie has given her a life again, even though she thought her life was over when he arrived.

You have a wonderful advantage knowing that you will be getting a stoma, and you are doing a great job in trying to educate yourself before hand.
I wish you the best of luck in your surgery and new life!
If you have any questions that I may be able to help you with, please feel free to ask. I don't have the stoma myself, but trust me I know enough about it all now that I feel like I do sometimes ! haha.
:ghug::ghug:

Keep up the great attitude and don't let any naysayers get you teary again!

 

[littlefreebird]

thankyou to you both for your kind replies and well wishes, i really apreciate it. crohn's mom, that must have been incredibly tough and devasting to deal with so suddenly! i'm glad your daughter is feeling so well, i've been so unwell that i'm really excited to get my life back, ive even been planning where to go on holiday first- was thinking Turkey haha! hopefully it is reversed for her and she remains well. such an important social time in life, i'm sure she was just dying to have some normality back in her life. thankyou very much. its hard to think of questions, i know theres tons i dont know but i'll be sure to ask as i go along. ozzie is a great name too i was thinking of calling mine stella, stella the stoma haha, i loved the name and asked my partner if we ever had a girl could we call her stella, he said no, so i think i'll name my stoma stella instead
thankyou very much again, and luck to you's both

 

[Crohn's Mom]

Have you seen the movie "How Stella got her groove back" ?? LOL How very fitting...I love it !! You're going to do just fine!

 

[DustyKat]

Haha, Sarah (Roo, she is my avatar) has a kitten named Stella, I love the name!

Dusty. xxx

 

[glum chump]

Good for you, littlefreebird. Anything major in hospitals is never fun, but I had an ileostomy just over a month ago, and already I can feel the difference from before my surgery. I'm excited about food, I'm loving eating (although I'm trying hard to stick to low residue foods like they suggest!), I can move around and not have to think about cramps or running to the bathroom. Other people don't have to clear our only bathroom because I can't hold on and I feel a sense of freedom like never before.

Keep strength with the positive---whatever your experience with the surgery is, going in with a hopeful and positive spirit makes the experience much easier!

With care

Kismet

 

[littlefreebird]

glad you are doing well and enjoying your new lease of life, i'm sure the past month has been the hardest and now you've got it over with and just looking towards the future.
how long do you have to stick to the low residue diet?? i never eat fruit and veg bu it seems when they tell me i can' i get strong cravings for them hehe.
thankyou very much for sharing your experience
hannah.x