Looking most likely :(

[vickyoddsocks]

Hi guys!
I'm not new to the website, but i am new to this subforum. (I'll try and keep this as short as possible For years ive avoided looking at the forum, because to be honest, stomas scare the hell out of me!

But it seems now the time has come to face the fact that a iliostomy is looking pretty likely.

I'll give you a brief background:
Diagnosed at 16 (now 25), right hemicollectomy in May 2002. Rectal Abcces and fistulas developed in September 2002. Drained and Setons inserted for 18 months, then again a few years later (ages 17-20) Came very close to having a colostomy then, but then discovered Elemental diet. Stayed on that for 7 1/2 months. Remained fairly well, had the odd flare up. Stayed on Infliximab and azathioprine etc for many years. In June 2009 decided to do the elemental diet again, and have been on that since (for 19 months now!). I mostly remained VERY well (ran a half marathon!) but unbeknown to me had strictures developing. Since then they have grown somewhat and we tried to dilate them with little succsess.

Anyway, i have been eating slightly on and off since January (christmas was too much temptation) and im now having a flare up too
So i had my appointment today where we discussed surgery to remove my strictures. The location of them is really unfortunate, and it looks like i may be having a subtotal collectomy or a perminant iliostomy (due to the rectal problems ive had in the past).

It has all come as quite a shock if im being honest, and i suppose this is where i need your guys wonderful help and experience.
I'm booked in for a pelvic and abdo MRI tomorrow morning, and then obviously depending on the results of that, and how i look once im 'opened up' will depend on the type of surgery i have. But ive been prepared to expect the worst.

The entire time ive had this goddam illness ive fought with all my strength to avoid 'the bag' - hence not eating for over a year and a half! But now it seems ive got to admit defeat.
Like i said im 25 (female), so i obviously worry about the typical things; clothes, self confidence, smells, leakages, quality of life. And it all absolutely terrifies me.
Ive admitted today that my quality of life at the moment is poor. I cannot work, i cannot eat, and im not really doing much as im in a lot of pain a lot of the time. Found out at the clinic that my recent blood test showed my heamoglobin at 8.7 - which is my lowest ever. And I'm just finding it hard to accept the permanent-ness of it all! Fortunately i have the most amazing boyfriend who doesnt seem phased by any of it, and will help me no end. But im still just terrified.

Ive been reading this forum for a week or so, and suprised to read that so many of you say its the best thing you did, and you havnt looked back. But then ive also read post from people who have hated every second of it - and i fear i would be one of those. I can tend to get fairly depressed at times anyway. And even though I've had crohns since i was 12, ive still not fully accepted it. So im finding it hard to see how i would ever expect having 'the bag'
To me personally it was the ONE thing i wanted to avoid, and as long as i did, i was beating crohns. But now it really seems like Crohns is going to win. ( i know that sounds dramatic but thats how i feel)

Anyway, i thought i would introduce my story, and ill keep you updated on my progress - i could be having surgery pretty soon

And any advice would be SO greatly appreciated. I'd love to hear from those of you who can honestly say it was the right decision you made, and you dont regret it. Thats my biggest fear.
And realisticly, how do you have to adjust your 'fashion' to hide it.
Im being honest when i say i know NOTHING about the bags etc, and im going to spend the next few weeks educating myself as much as possible.

Thanks so much guys
Sorry about the length of this in the end! hahaha!
Vicky
x

 

[vickyoddsocks]

Wow just seen theres a lot of sad faces in my post! lol!

 

[dreamintwilight]

Hi Vicky!

I don't have any personal advice to give you as I haven't had to deal with any type of surgery just yet, but I wanted to send out my support to you!

Facing that sort of decision, I imagine, is a lot to take in, and I don't blame you with struggling to accept it! This disease forces us to have to make a lot of decisions that are not fun unfortunately. I have found that this place is so awesome when it comes to tons of advice and welcoming people who offer so much genuine support.

Best of luck to you as you go through all of this. Keep us updated!

 

[chrisnsteph1022]

I haven't had any surgeries yet, but this is one of my biggest fears, too. I will avoid it at any cost (except dying). Of course, I say that now, when the drugs seem to be doing the trick for me. I don't know how I'd feel in your situation. I can understand being scared, though. You're doing the right thing-getting yourself educated about all aspects of it so you can be prepared. If my time ever comes, I'll be reading everything I can get my hands on for it.

 

[Kris]

Wow, so much of what you said is exactly what I have been feeling for the past year. I'm 33. I just had a total colectomy on Feb. 15 2011. They left my rectum and gave me a temporary ileostomy. I'm hoping my rectum will heal and I can get my ileostomy taken down. I also know there is a chance it's permanent. It's all very new to me and my feelings about it are still very mixed. But, I can honestly say that it is getting easier and a lot of my fears have been eased. The smell was a huge concern for me before surgery. I found that nobody can smell it unless you empty the bag or change it. I also found that emptying it doesn't take very long at all and special sprays control the oder. The smell left in the bathroom is no different than if you pooped the "normal" way. I'm still very sore and haven't tried my normal clothes yet. I have been wearing low cut yoga pants that are a little loose and you cant see the bag at all. I like to to look fashionable and I'm sure I can make it work. I'm still working on my self-confidence and it's getting a lot better. Remember I have only had mine for about 3 weeks. I have a great husband who finds me very sexy still. Like you I NEVER wanted to end up with a bag and didn't think I would at this young of an age. I just got so bad that it was life or death. I got to where I couldn't work or have a normal life. Crohn's was winning. Do your research and I hope it all goes great for you. If you have any questions feel free to ask. I'm still new to it, but I know exactly how you feel and what you are going through. I'm still looking for tips to make it easier too. The hardest part is getting the surgery over with. Now I can move forward and it's a lot easeier to deal with.

 

[Kris]

Oh, and by the way I don't regret it for a second. I know it was the right thing to do. I had no choice and it feels good not to gush blood every day and run to the toilet 20 times a day.

 

[TacoBot3000]

I unfortunately had to be taken in for an emergency resection about six weeks ago and as a result woke up with "the bag". Fortunately, however, I was told that it would be temporary, but still, I would have to live with the thing for three months. I soon became so frustrated with it that I would just burst out crying, just imagine that, a 17 year old boy bawling over a plastic bag. But that was weeks ago and now that I've got the hang of it, I hardly notice that it's there anymore. And to be honest, I've never felt better when it comes to living with Crohn's. I guess that's how people come to think of it as the best decision they've made. (I used to think they were crazy too!) Anyway, no matter what path you end up taking, I hope it's one that leads you to a happier, healthier life. Stay strong!

 

[Nyx]

I have a permanent colostomy, and yes, it was the best thing that's ever happened to me. I had the surgery in December 2009, and my quality of life has increased 200x! I used to have so much pain going to the bathroom (all my disease was in my rectum and anus), I couldn't eat, I couldn't work, and I had to know where every bathroom on the planet was if I wanted to go out.

Don't get me wrong, the surgery wasn't fun (mine was an emergency so it was a bit of a shock to wake up with a bag!), recovery took a while, but once you get the hang of the bag, you don't even notice it's there. I can eat whatever I want, I go out all the time and don't worry about where the bathroom is, I exercise, I go swimming (there are pics of me on here in my bathing suit), I do everything I used to do prior to my Crohn's diagnosis. I also just recently had a colonoscopy, and I have no active Crohn's in my system I'm also off all the drugs! It was the best thing that's happened in a long time...

Any questions, feel free to contact me here or on facebook. Good luck!! You'll be just fine!

 

[CDDad]

I have a different perspective - I would say this is the worst thing that had happened to me. But, like Nyx says, it has improved my life over what Crohn's did to me.
I just a realist. I had to have an ostomy because of Dysplasia, and also my Crohn's was ruining my life before surgery. I don't like it, but I HAD to have it. it had just reached that point. I wish it were different, but no amount of wishing was going to prevent this for me.

Anyway, my Crohn's is in deep remission - afraid to come out now! My health and vigor are 100%. To me, it's just something to accept, move on and enjoy this new healthy life. It took me about 3 to 4 months to come to terms and reach the beginning of acceptance.

Whatever happens Vicky, we'll be here for you.

 

[ameslouise]

Hi Vicky - It is so hard to have to make a decision about surgery. In many ways it's much easier to be in an emergency situation or such a dire situation that there is no choice!! I don't wish that on anyone but it's so hard to be facing uncertainty.

I think it's unfortunate that so many people think of the ostomy as a last resort. I think it should be looked at as a treatment option! I had a temp ileo 9 years ago and am about to get a permanent one. I am so excited! The last couple days I started to think about how much better my life is going to be - no unpredictability, no accidents (well, no butt accidents anyway - I'm sure I'll have a couple bag blowouts), and this Spring, I will be able to take a bike ride for my family and not have to worry about going to far away from a bathroom! That makes me so happy!

I'm sure there will be challenges for me, but the increased quality of life will far outweigh those.

Just like any other treatment, there are "side effects" and you have to balance those out.

Hang in there. I hope it works out for you that you don't need the surgery, but if you do need it, I hope you can find the strength and courage to embrace it.

- Amy

 

[Terriernut]

Vicky,
I'm so sorry you are going thru all this pain! Even with all the pain and the trauma, and the 25+ times a day I was going to the loo, I never thought I'd have to have surgery. Hence, when I was in hospital and they told me, it's the bag or the body bag...I still resisted. Ended up with it anyway. Almost dead each time after admission. I had to do it. I have had complications from surgery, infection mostly. But I can say this, it has improved the quality of my life. And I'm still recovering mind you. I'm almost 50 so obviosly I'll recover slower than you, but I had my surgery the night of the 22nd of Dec. Missed xmas, oh well. I dont LIKE having the stoma mind you. In fact, I resent it. But, it's the best thing for me. So although I have my bad days, I'm very happy to be alive, and I'm happy to be having a normalish life again. I dont know how you are...but even to go grocery shopping was a nightmare for me. Let alone trying to work (especially with the general public as I do...and running to the loo!). It can greatly improve your quality of life. If you have depression with it, and many chronies do, ask for anti depressants. Whatever you need to help you! Dont forget, as long as you are on this forum, you are not going thru this alone. And well done with the super boyfriend!!! That makes all the difference! Best of luck to you, and keep us updated!
Misty
(Stan the stoma is learning party tricks!!!)

 

[vickyoddsocks]

Hi guys!
Firstly I must thank you all so much for your replies, me and my boyfriend read them with much anticipation and they all helped no end! Secondly i must apologise for my late reply! Believe it or not my computer keyboard actually BROKE in the middle of me last writing a reply! I thought it was the batteries, so missioned it to the supermarket to get some new ones, turns out the entire thing had broken so ive had to buy a new one! But at least it works, and now i can type from a shiney new keyboard! lol!

So I had my MRI scans on Thursday, i actually fell asleep during the scan twice i was that exhausted! Even with all the noise! We contacted my Gastro and I've been arranged an appointment with my surgeon - which should be this Tuesday all being well. Things seem to be happenening very quickly and im not sure if thats a good or a bad sign!

I've obviously had more time to 'adjust' to the idea of having a stoma, and if im being honest it seems to be getting more and more appealing. Me and my friends and family have all been discussing what it would be like if i could live a normal life again, and obviously its starting to appeal a bit - althought still scares the hell out of me.
I really appreciated everyones honesty with the replies, its nice to hear that some of you telling me its not all that bad, but obviously not that great either. I'm trying to look at it in the most 'easy' way as possible. And my boyfriend often says to me, that at the end of the day, its just a bit of plastic, and you cant let it rule your life if you do have to have it.
Also its not a definate that im going to have a stoma yet, like i mentioned before they may do a 'subtotal collectomy', or a temporary stoma. But if im being honest i truely think its only a matter of time untill i have the permanent iliostomy anyway. And this way im preparing myself best i can.

My mum works as a medical secretary and knows a couple of stoma care nurses. She said she got me a 'starter pack' or something. Like with a practice bag and things. She also said one of the nurses would be happy to speak to me. But i decided against it, as much as id like to think im brave, i know it would scare me quite a lot to actually TALK about it (if that makes sense!) and untill ive had my appointment with my surgeon and know a bit more, i decided to leave it.

However i still have some really random questions, so if any of you dont mind answering that would be fantastic, coz its the silly little things i find myself wondering about.
In terms of washing, do you keep it attached whilst showering or bathing? I was thinking about bathing and surely with the open intestine it would 'fill up' with water!
So that brings me on to my next question, im not sure if ive heard about a 'plug' you can use, if you did want to go swimming, is this true?!

One of my biggest fears is that ive heard that the stoma can 'fart', is this true!? Can you hear the air coming out, and does it sound like a fart? Because if this is true id find that pretty distressing not to have controll over that.

And also pregnancy? I assume everything would still be normal as it shouldnt affect any part of the reproductive system, but can you still have a 'normal' prgnancy and natural birth?

These are all i can really think of at the moment, but other little things keep popping into my head every now and then so i may keep asking away if thats ok with everyone?

Thank you so much again for all your replies! This forum certainly makes things a lot easier to deal with!

Vicky

 

[ameslouise]

Hi Vicki - Glad you're starting to adapt to the idea of a stoma. Better to be prepared and pleasantly surprised than unprepared and devastated by an unexpected outcome!

Some of the others can answer your questions better than I because it's been a long time since I had my temp. But I think yes, you shower with the bag on, otherwise poop would be running out all of the place!

I went swimming a lot when I had mine. I got a bikini that had a granny bottom with a skirt. It was cute! I just used a smaller bag, but I have read about a plug for swimming.

I remember my stoma making a lot of noises at the beginning and quieting down over time.

Good luck - keep us posted after your consults!

- Amy

 

[Ian]

Hi Vicky,

Sorry I can't answer your questions as I haven't got an ileostomy, but may be facing this really soon so I can totally empathise with how you're feeling! Just wanted to say good luck and I hope it makes your life 100 times better. Your bf sounds like a good guy too, it's great that he's supporting you and not phased by it - but then in all fairness, look at you, you're beautiful A piece of plastic isn't going to change that!

 

[CDDad]

Hi Vicky,
I think one of the reasons many of us are so positive about our ostomies is that we can do everything we did before. I went swimming many times last summer, in both pools and the ocean.

I usually keep my pouch on when showering, mostly to avoid a mess. An ileostomy likes to create output at almost anytime without warning. But on change day (which is every 4 days for me), I take off my pouch and flange and hop int the shower. I do this first thing in the morning when I usually have no output. Water does not enter the ostomy.

As far as I know, there is no plug to go swimming - just wear your pouch as normal!

Yes, the stoma can and does fart. For me personally, it is not a big deal. My kids giggle when it happens at home. In the office, not so funny, but 90% of the time, I can control it by hand pressure on my stoma. Usually, I can feel something brewing when it will release gas (but not always), and I can get my hand there in time to muffle it. If I'm in a meeting room, I usually sit with my hand over my stoma. I think (hope) it looks pretty natural. Sure not ideal, but the return to great health outweighs these little issues for me.

Most people say the fart sounds are worse right after surgery and I agree. Once I returned to the office, it was not too bad. For me, it seems most noisy in the morning - maybe while digesting breakfast. Not sure why, but the afternoon just seem less active in that regard.

In the latest issue of the Phoenix (UOAA ostomy magazine), I was just reading about woman who delivered twins. Let me know if you would like to read the article, I can scan and email.

 

[Nyx]

Re: farting.....lol Oh hell yes!!! I'm not sure if it's different with a colostomy than with an ileostomy, but my Oscar can be quite noisy at times! But I'm the same as Joe, I can feel it coming and I put my hand over it and it does a great job of muffling it. I'm currently in college and during exams if I feel one coming I just have a coughing fit and put my hand over it and that seems to work. It was much worse when first recovering, and now over a year later it obviously still has to happen (better out than in I always say) but with much less frequency.

I haven't heard of a plug, but there are stoma caps that you can get for swimming. It's just like a band-aid for your stoma. I'm not sure I'd recommend them for ileostomies as your output is very runny and seems to be less predictable than for those with colostomies (plus, people with colostomies can do irrigation to clean themselves out if they'd like as well....it's like an enema). I just wear my appliance under my bathing suit and I'm good to go. I've never had a problem doing that.

Re: showering or bathing...I just wear mine in the tub. On change day (which is every 7 or 8 days for me) I just soak in the tub with everything on, then get out and peel it all off then wash Oscar with a wash cloth and mild soap. I usually walk around with him hanging out for about half an hour to give my skin some 'air' time and to dry off completely too. I just carry around a piece of toilet paper in case he decides to spit on me....lol

 

[Terriernut]

Vicky, today is Tuesday, so you must have spoken to your surgeon. How did it go?

Misty

 

[Kris]

Mine made alot of noise in the first week. It's pretty quiet now. I'm really careful with what I eat though. I'm not totally comfortable about returning to a normal diet yet. Good luck with your appointment. Hopefully your surgeon will want to do a temporary one and give your rectum a chance to heal. It may or may not. My surgeon is pretty hopeful that I will be able to reconnect. He said hopefully it will work for a few years, and by then who knows what medical options we will have by then. So, if there is anyone who CAN hang on to their rectum for a while, do so. Even if you have to have the bag for a few years. You never know what medical advances they will make 5 or 10 years from now. Just my opinion.

 

[Terriernut]

'Stan' managed a really good fart my first day back at work. In a meeting with management trainer people that report to the head office. I'd have been proud of him if I wasnt diving under the desk...no actually I was running to the other side of the room pretending I had something REALLY important to attend to! One of these days I'll get the hang of Stan and know it's coming and cover him (I'm getting better at it) and learn what NOT to eat. (as IF I'd not eat things I love!) But I SWEAR he picks the most inopportune moments! But mostly when I 'fart' now, I blame it on someone else! Because alot of people know about my surgery....they think I CANT fart anymore! So they now ALWAYS look at someone else! It's hillarious! Try it...it works really well!
Misty

 

[ameslouise]

LOL Misty! That is so funny!

 

[moogie]

I had both versions,

I also went swimming with the entire gear on no problems.

I showered with it and when it was time to change every 4 or 5 days I would do it in the morning with everything off. Most of the times I never had any accident. It also felt good to wash like a normal person.

As for farts well even before the stoma I was big on gas and having a bag never changed that. I still remember a time I went to the movies and it was a very quiet movie and it decided to have tons of gas. The theatre was full and people near me were all very uncomfortable and I'm sure they were all expecting the smell which of course never came. I was so embarrassed, but hey that's part of life with a bag. I had my two bags for 6 months and it was not so bad. At work everybody knew and made jokes when I farted making me feel cool. for once I was allowed to fart all the time

I got my first bag after a surgery for a groin hernia it was not something that was likely to happened but boom there I was with a bag. It took me a few weeks to finally accept it, even getting naked in front of my gf was a real embarrassment. She of course was a perfect girl she never made a fuss and treated me just like before.

It'S scary right a first but when you get used to it it's not really a big deal. I still remember I was not sick during the time I had a bag. That's a good thing.

Good luck dear. keep us posted.

 

[ameslouise]

No advice for ya Misty, but just laugh your head off when one of his farts turns out to be a shart!

- Amy