Possible stoma.. Hard decision!

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emma turner

emma turner

Joined
Oct 17, 2012
Messages
22
Hi guys...
I'm having so much trouble deciding whether I want to have the surgery or not. I've heard some say it was the best thing they've done and others say they wish they hadn't!
I've had pain in the same spot for years now so they said they can get rid of the diseased bit and I can have a temporary colostomy bag for 3 months while it heals.
I'm only 18 and it's coming into summer... I feel like I'm going to lose myself for this time.. Is it really bad.. I'm so anxious.
 
There is a lot go consider.
If its temporary - you've probably got nothing to lose.
It is major surgery though - and it has a long recovery period.
All surgery also has risks.
You also run the risk of doing more damage by not getting the surgery.
For me personally - I had to get a Stoma to save my rectum.
It's temporary. And I was totally ok with getting it.
But it has been psychologically the most challenging thing I have ever dealt with.
It was painful physically as well.
But I was also very very sick when I got it.
If you're not really sick - you'd probably have a quick recovery.

I'm not sure if any of this helps.
Good luck with making your decision.
 
Sorry no advice.

Dusty is the mother two children who both had surgery. A son about your age and a daughter a little older.
 
Thanks Catherine. :)

Hey Emma,

As Catherine has said, both of my kids have had surgery, one emergency, one planned, and neither required a stoma. Both have had excellent outcomes and for both of them surgery was the only option.

Just a couple of questions to start...

Where is your Crohn's located?

Why did they say you needed a stoma?

Certainly a stoma is required under certain circumstances and I am wondering what your circumstances are.

Dusty. xxx
 
Have you tried all traditional therapies/medications? My old GI pushed surgery quite a few times and I always resisted...and am glad I did as Remicade finally came along.....
 
Emma, it's a hard decision. I swore I would NEVER have a Stoma, here I am with a permanent one. It is actually probably one of the better things I have done. As mentioned it is a big op, psychologically challenging and at first is like learning to look after the Stoma can be tricky.

You should try and get an appointment with a Stoma nurse who may be able to put you in touch with someone your age who has been through it that you can talk to.

I wish you well with your decision making. Even get a second opinion or discuss it with your gastro/ CR surgeon.
 
I'm 24 and had an emergency stoma placed for 3 months (accidental bowel perforation during a colonoscopy in a very diseased area of the illeum). Honestly, as long as you can keep your inflammation down after surgery 3 months really isn't that long. I'm having mine taken down January 14th and we are almost already into December. Its like by the time you learn how to take care of it and how to live with it, its gone. And having had it temporarily now, I know I would be able to live life with it permanently and would be just fine (although I would prefer to not have it)

If its something that they know will never heal, getting rid of that diseased part is a good idea. Especially because it will help your meds keep your other areas in control.
 
Hiya Emma! I hope you come to the decision that is right for you. A temporary stoma for 3 months may not be too difficult for you. I am hoping that they will do the surgery laproscopically for you?

What has made the Dr's come to this conclusion?

Dont worry, if you do go thru with it...us fellow ostomates will be here for you.

:kiss:
 
Wow all you guys are so supportive thank you all for your opinions and ideas ... it gives me a lot to think about! I have booked it for the 4th of February (it's now the 17th of november)... i'm still seeing how i go in the time but i thought i'd make a date in case.

Samboi- I have heard about how difficult it will be physiologically but haven't heard of the physical pain, (beside the surgery itself) does it hurt once you have recovered from the surgery at all? At the moment i'm not overly sick so thats good and i hope it would be a speedy recovery.. but at the same time because i'm not so sick it makes it hard to make the decision!

DustyKat- i'm sorry to hear about your children.. My crohns is located in the bottom end of my large intestine ( about 20cm in from the rectum) The only reason they have suggested me having a stoma for that time is to allow the large intestine to heal by diverting it's path for the three months.

Pasobuf- Thanks for your ideas and I have tried so many alternative ways instead of surgery... i've been on remicade and i heard it was apparently a great off switch for crohns but it didn't work. I glad it has worked for you!

Janette- That is such a great idea.. i would love to talk to someone my age about it! never even thought of this. I'm sorry to hear you have a permanent one. I'm sure your perfectly happy and healthy now? I feel silly for worrying about having one for three months when you've been through so much!

KatieSue- apparently the medication is keeping everything else under control except for this one bit in my large intestine so that makes sense that they would do the surgery. I'm sorry to hear that happen to you! That would have been such a big thing to wake up too, not sure if i could have handled that. Im glad to hear that the three months will go fast! I wish you all the best with it in January!

Misty- This is probably the stupidest question... but i haven't heard of having it done laproscopically? what does this mean? and like i said before, the doctors thought it would be best to let it heal and divert the path in the mean time... :\

Thank you ALL again so much for your comments, such a great bunch.
I look forward to hearing from you again.
 
Hi Emma
I had active disease on my Stoma that inhibited the healing process.
I was in a lot of pain for a very long time.
It was an absolute agony.
All good now though!!
 
Hello Emma

My sister had it done laproscopicly but they end up making the inscision a little bigger but she was very sick for a long time and had many fistulas. She had a temporary bag for 3 months and TPN at home. After the first surgery I noticed the difference on her health .. Now it's been almost 7 weeks since her reversal surgery and she is feeling and looking great after so many years of suffering.

I had my surgery done 2 weeks ago. It was laproscopic to remove a strictures part of my ileum plus a small part from the beginning of my colon .. I did not need an ileostomy. The recovery process is difficult especially psychologically and I am still struggling .. I think once I am recovered and I'm able to do what I enjoy I will feel much better .. Your body will go through major changes and it needs time to adjust.

Hope it goes well with you :hug:
 
So glad to hear that your all better now Samboi. I hope i don't have to go through anything like you have.

wow, I'm sorry to hear that but thank you for writing. I think that psychologically will be the worst to go through.. i've heard that so much now. I guess there is not much you can do to prepare yourself for it then really? I'm glad your sister is feeling healthier now! I'm kinda heading towards just getting it done and dusted! hopefully with a really good outcome would be nice hah.

thanks again :)
 
I think you can prepare for it mentally. I only had a very short preparation time myself, due to emergency. However, in that short time, I prepared.

Everyone is different of course. But I resolved that I wouldn't look backwards, only forwards. And each day I had a goal, so I could almost always have a positive outcome. Now as ill as I was, those goals were very small indeed. Like, I will brush my teeth, and comb my hair. Or, I will make someone else feel better today. Or, I will take a shower. Believe it or not, since I was almost dead before surgery, those were mightly hefty goals at the time!

You also need to put things in perspective. A temporary stoma is no big deal if you look at some things others are going through. What I mean is, you need to look at a big picture sometimes, rather than only what you are personally going through. Somehow, these things helped me cope immensely better.

I hope that helps.
 
I had months to prepare for mine and that extra time, I believe, made a huge difference for me. By the time the surgery day got here, I was mentally ready and looking forward to the assumed relief surgery would bring.....and it did!

Best wishes to you!
 
Yes i already am starting to see how common this actually is and how many people have been through worse off situations! Before i felt like i was alone but since i've been ready things on here and speaking to people like yourselves i feel pretty lucky to only have it like i do.

thanks guys :)
 
Haha. You're never alone when you have a Stoma!
You have a little sidekick that goes everywhere with you!

And then there's your fellow ostomates!
I don't think you'll ever meet a more supportive group of people.
Anywhere.
 
When I first joined the forum, I was reading everyone's stories and feeling out of place because I was not in all that bad shape. Then I began ready about stomas and what lead up to that. Well, I kept thinking, that will never happen to me..I'm not that bad. Turns out, there are so many different degrees of "that bad." Ha! But yes, we are some of the lucky ones who do have time to prepare and make the decisions rather than the decision being made out of an emergency situation.
 
Emma,
This forum is great, the members are so supportive and have so much knowledge to share. I never feel like the only person in the world with a Stoma. It is great to come here and hear what others have been through, and what advice they have.
Good luck with your decision.
Janette
 
haha this is all so true :)
you guys are all great support!! thank you so so much. It's so nice to know i can chat to you all.
another question... if you have the stoma during the heat.. does it make it really uncomfortable? I live in Perth Western Australia and it can get pretty HOT!! :\
 
From Lostnut...who lives in Tucson Ariz...she said it didnt bother her once she got the right gear. But she did change more frequently.

Sadly it doesnt get that hot in the UK, but once in while it does. And it didnt bother me a bit.
 
I live in Texas where it is hot and humid. I did get a little bit of heat rash a couple of times under the baseplate, but not bad. I did have to change more frequently, but only 1 day sooner. Overall, the hot summer wasn't too bad for me.
 
I get a bit sweaty between the bag and my body when it's really hot, but nothing really to worry about.
 
Oh it's completely possible to prepare yourself mentally. I did as much as I could and then I was really nervous before my op as to how I would ACTUALLY cope afterwards.. then after my op the general pain and trying to get comfortable completely took away from the worry of the bag and my new stoma. Then it was just a breeze after that. The only thing that ever made me cry was being fed up of the pain. My stoma hasn't really bothered me at all. Mentally I found it easy to deal with so I am so glad I let myself mentally prepare! If you have the op I'd definitely want to see a stoma nurse and ask to see examples of bags etc. I had a fake stoma and wore a bag on it for a few days. That really helped.

With the heat, it didn't bother me but you would probably just need to change your bag more often do to the sweat. Good luck!
 
Hi Emma,
Re the heat thing. I live in Whyalla South Australia. We have some real stinkers, I haven't noticed the bag makes me hotter. You will be pleased to know that swimming is a breeze as well. I have been for 2 swims in the ocean and loved it. We have a swimming pool but I have not ventured in there yet as I have some unsealed wounds and just don't want to risk an infection. The sal water is great for the wounds.
 
Hey Emma, a lot of people have already given you some great advice so I just wanted to say that no matter what you decide, you'll always have the crohnsforum by your side to support you and hopefully makes things a little easier.

My little brother got a stoma when he was in his teens and it saved his life (He had UC). I won't lie, it took him quite a while to get used to it and dealt with some hard times during the beginning psychologically, dealing with getting used to the bag, etc. At the time my brothers was meant to be temporary but now he refuses to get it switched back to "normal" because he feels so much better now than he did before.

There are many members on this forum who have very normal lives, and even more exciting lives than a lot of people without, so once you get used to you can still live a "normal" life.

The way I look at it is, I think it would personally be one of the hardest decisions I would ever have to make but I would bet there's so many people I, and everyone else has come into contact with who has a stoma and we don't even know it.
 
Hi Emma
The way i see it is.. only get a stoma if you have no choice but to get one. Ill tell you why. i was told about a year ago i NEEDED a stoma and there was no other option. It made me depressed for a bit trying to come to terms about living with a bag. i simply couldnt accept it so i changed my medication, started a new job with a toilet i could use any time i needed one and had less stress. slowley i started to improve to the point i no longer needed one. probably went to the toilet 1 time (at the same time) every day and felt back in control.

Although i have good months and bad months, im delighted i never went on my doctors orders.

But im not daft enough to say i will never have 1. but only if it is the only decision to make. so please dont rush into it pal.

Nicky
 
I had a the surgery with not much choice in the matter but I can tell you that my life is SO much better. I did have the 3 month stoma and after the swelling goes down I was an expert tending to it. I don't regret it.
 
I would seriously think about it.My surgeon told me my life would be so much better with a colostomy and he was very,very WRONG.I am a prisoner in my own home,I have leaked so many times out in public it's not funny.I am not telling you that you would end up like this but you should know that bad things do happen with this surgery.I have had this stoma for going on 2 years and have seen numerous stoma nurses.I have an appointment at the University of Kentucky on Nov.28 to schedule reversal as my surgeon said that he would not risk doing it.Go figure.Good luck and do what is best for you.I didn't mean to scare you,but I had a relly bad experience.
 
Hi Debbie. I'm so sorry to hear of the problems that you have had with your stoma - it shouldn't be that way. Have you ever had any explanation of why you are having so much leaking?
 
Not really.I have had the original colostomy surgery and a revision where he closed the first one and put another one in a few inches lower because the leakage could not be stopped by anyone including the Surgeon,numerous ostomy nurses,home health nurses and the ER.It is really hard not to be bitter,I was not told of the chance of the leakage problems.Don't get me wrong ,I owe my surgeon my life,he caught my cancer at a stage 2 and now the cancer is gone.He is a great Dr.and surgeon,its just this whole colostomy situation and the fact that he moved his practice to Miami FL without notifying his patients hasn't help the situation either.I had to find all new Drs.to try and rectify this situation.
 
Honestly, if it had been formed correctly, you should not have these issues. I have to give the surgeon who did mine (emergency) all due credit. It sticks out and has a proper spout like a teapot. Not in the ideal location, but hey I manage.

I am sorry you have had these issues. I am not one to take a 'no' for an answer and would have been screaming down the house in your situation. Frankly, it doesnt have to be that way! Mind you, we ostomates MUST take full responsibility for making our own lives better. If something isnt working, we need to make sure we find people to help to make it better. Testing every sample made for instance. But never would I live with constant leaks. If I had to sit on someones desk and leak all over it to make my point, I bloody well would!
 
Your advice and stories are all SO great to hear.
Debbie i'm so sorry to hear of your troubles but i'm glad because it reminds me that it really is a BIG decision. My prayers are with you.
I'm glad to hear the heat is not overly a big problem, a little sweat never hurt anyone! :) I've just recently had a GREAT day so i keep praying that from now on maybe it will start to heal a little more until the surgeon says it's not bad enough too need it. (then again it's only been one day and i'm probably getting my hopes up)

Thank you all so much for commenting! I'm glad i have people like you guys to chat to about this stuff.. before i felt so alone, everyone else my age being healthy and having fun, late nights out with friends! It's funny how much people take their health for granted...
 
I know wha you mean. I was first diagnosed in my 2 nd year at uni. I definitely had taken my health for granted until then, and ever since I've just been wanting good health back.
 
Hi Emma! I had my permanent ileostomy at 22. Had my j-pouch at 19 which failed miserably so I finally gave in, so to speak. You will certainly be able to live a full life with a stoma. It's not an easy thing to have at your age, but you will soon enough find it a normal part of your life. There is a little bit of a learning curve at first, and if you have an accident or two along the way that's normal. But don't let anything get you down. You will learn what appliances work best for you and soon it will be as normal as wearing glasses. Relationships and intimacy may be scary at first, but it's like riding a bike- much easier after the first time. My recovery was pretty quick- once I had bowel sounds I started eating. Tried a liquid diet first day, but moved up quickly. No pain at all. Some people say a negative is they have to get up at night to empty their pouch, but if you stop eating early enough and empty it just before hitting the sack, you can get a full night sleep. At least that works for me.
 
wow guys, thank you all for your advice.
I haven't been on in a while but i just have to tell you all that for now i've had a miricle! I started taking a laxative which has helped more than EVER. i must have been really clogged up and the inflamation of the crohns would have been really hurting it.. but after a terrible day of living on the toilet i now have cancelled the surgery, i get pain a few times a day but NOTHING compared to what it used to be... and i keep taking the laxative (15mls) every night!!
Crohns is such a unknown disease! All i know is that over christmas and new years i have been feeling great!! Hopefully this year is going to be a really good one!!! :)

I can't believe how good i feel and how happy i am :)
Thank you ALL so much for your support, i thought i'd come back on and let people know. Fingers crossed it stays this way, even if it's only for a while...!

You guys are all in my prayers! Praise God.
<3
 
That's great that you have found something simple that is helping you so much. Here's hoping that it will continue to do so for a long time to come. :thumright:
 

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