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My panproctocolectomy

Terriernut

Terriernut

Moderator
I can attest to the small scars and I'm SO JEALOUS!!!!!

But so happy the upped dosage of pain relief is doing its job. By the way, Stan still bleeds if I'm a bit rough with him, or he has the hump.
 
Misty-Eyed

Misty-Eyed

Hi all!

I have pics as promised. I took them yesterday which was exactly 3 weeks post op.

This is a pic of my scars. Although you may have trouble seeing them lol. Excuse the flab.
Belly!!!!

I also took a video of my stoma moving around! Don't worry, nothing comes out of it! I think stomas are something that only it's mum can love lol.
Video of stoma
 
Terriernut

Terriernut

Moderator
Yup, they move around. They have personalities. They really seem to anyway! It's kinda weird till you get used to it. I love Stan. He has 'moods', distinct likes and dislikes. And he gets happy, and he hides when he is upset.

If this reminds you of a mans...then you would be right!
:rof:
 
Misty-Eyed

Misty-Eyed

Haha no, you can't feel it moving, Carrie. Nor can you feel when anything comes out of it! Which is kind of good I guess, because it means that you honestly forget it's there most of the time.
 
Nyx

Nyx

Moderator
Oscar moves all the time...it's like your esophagus, it expands and contracts to move the bulk out. I can feel when Oscar's doing it, and that's apparently not common (I can even feel hot and cold on him too and that's not supposed to happen either). But for the most part, I barely notice him at all. Like I mentioned in a previous thread, I really don't miss making the "pushing my brains out" face....lol
 
Gav

Gav

Your stoma is much neater and smaller than mine! Stoma envy!!!! :lol2:

Mine moves just like that...weird to see someone else's stoma in action. That's great footage for others wondering what a stoma looks like and how it acts.

Hope things are feeling better now the weekend is here.

Gav :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
That's awesome Michele! Is the bright red normal? Or is it still a little post-op fresh? Thanks for posting that! I have a feeling this will be often referred:)
 
Misty-Eyed

Misty-Eyed

Carol- well it's one of the reasons I posted it. I didn't really know what one looked liked either before. When people google image these things, you tend to get horrendous photos which quite frankly scare the living daylights out of people. Who needs Halloween when you're about to have an op and have access to google images?! Lol

Gav- it is? Smaller in which way, length? Luckily I had a superstar surgeon and I was promised a nice stoma. After all, I'm going to have it for the rest of my life so I wanted a good one! Plus I was very lucky that it started working from day one. Before I even got out of bed!

Mark- you are welcome. I don't think people post enough pics on here, which obviously is fair enough. But photos of it don't bother me, so why not? I'd draw the line at pics of by bum wound though. NO ONE wants to see that! Lol

In other news, I managed to shower and wash my hair today with no sickness! Yey! I think the key was taking the anti sickness tablets well in advance and making sure they didn't make me fall asleep! Didn't want to push it and change my bag too so gave it a bit of a blow dry! Feeling so much more refreshed now. And you guys can now put your nose plugs away! Woo!
 
IAmTheWalrus

IAmTheWalrus

How did I miss this thread?

Glad everything worked out, Michelle, when I first joined this forum you gave me some nice advice and I'm grateful for that, the least I could do is pop in and say hi.

=D
 
Misty-Eyed

Misty-Eyed

Thank you, Darryl! It's nice to see you around again!

I don't think most people come into the stoma subforum so was easy to miss!

Hope you're doing well :)
 
Terriernut

Terriernut

Moderator
I know Cindy. But lets just say our big uns suit our personalities??? Stan is 32-35mm depending on his mood. (or my flare)

But I'm jealous of you. You have solid poo! Oh how I envy thee!!
 
Misty-Eyed

Misty-Eyed

Haha Cindy. My parents wee joking that my sister's would be a 60 if she ever had one because her 'logs' are massive! It must be like giving birth when she goes to the loo lol.

Mine is almost 30mm and a perfect circular shape. Love it!

Oo but that's a good point, Misty. Do they come out at the same time each day on the regular, Cindy?
 
Nyx

Nyx

Moderator
I'm pretty regular...every morning as soon as I get up and sometimes after dinner and that's about it..unless I eat something that disagrees with me...lol
 
Terriernut

Terriernut

Moderator
I'm REALLY jealous now. I have a so called colostomy, that looks and acts like an ileostomy. If I had a solid poo, I'd faint from amazement.

Cindy, I'm surprised they say you cant be reversed with things working the way they are.
 
Misty-Eyed

Misty-Eyed

That's amazing! I'm jealous too. Can you wear one of those colostomy plug things then, Cindy? It would be nice not having to wear a bag the entire day or when you go swimming or what ever
 
Nyx

Nyx

Moderator
@Misty...I can't have a reversal because my rectum and anus is so diseased it would be kind of pointless to do that. The only reason they didn't sew up my anus during my surgery was that they couldn't get my permission to do so. I wish they had just done it!!! So now I have to go back and get my stump removed at some point.

@Michelle...I could use a plug or a stoma patch if I wanted to, but even after 2 years I still don't trust that little bugger Oscar...lol If I started doing an irrigation every day I would do it in a heartbeat, but I'm not sure I want to try that just yet. Maybe after I do more research on it...not sure I want to deal with having to give myself an enema every day.
 
Terriernut

Terriernut

Moderator
Oh! Sorry about that. Bummer, another surgery someday down the line! I know you've discussed that. Why cant we have happy asses....oh why?? I've tried discussing this with mine, but I cant bend over enough anymore at my age. Now I just yell at it over my shoulder. Hmmph.
 
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Misty-Eyed

Misty-Eyed

That's fair enough. I wonder if you could have a bag overnight and leave it on till your morning.. Output. Then put the plug in during the day till you were next due your second output. Would save having to do the enema so much. I don't really know much about it either though. I just saw it somewhere and got all excited, then saw it was only for colostomies and was like 'poop!' and moved on.
 
R

Rl_gardner

New - surgery in 11 days

Hi I have been reading ur posts and it sounds like ur doing great!! I have my op on nov 15th in london. I had an emergency ileostomy 18months ago and it changed my life as I had got very Ill very quickly, I have perianal fistulas that are causing me lots of problems and cannot b fixed hence the op. Unfortunately they are going to have open me up but hoping the epidural after is going to help :) u said ur bum has been leaking did u have it sewn up?
Rachel
 
Porkpie84

Porkpie84

Hello all,

Just wanted to say that having only been diagnosed in May after an emergency bowel resection I am new to this condition. After getting a post surgical infection I was told I may have to get a stoma and I remember the uncertainty I felt. It turned out not to be a bowel leak but a wound infection only. I'm now undergoing relevant treatment for my Crohn's but know that having this condition means having a stoma will always remain a possibility for the future. You never know and all that jazz.

For that that reason I did a little reading to understand stomas so that if I ever face that possibility again the understanding I have will help alleviate the anxiety of the unknown. I came across these posts during my reading and I just wanted to say that you guys are an inspiration and are lots of fun. Reading these posts Terriernut, Nyx and Misty-eyed inparticular make me smile. Even on your worst days you keep a sense of humour and I think thats fab! :)

Keep up the good work ladies! :) I wish you a speedy recover Misty and hope to chat more with everyone around the forum

Lots of healing love,

Becky x
 
Misty-Eyed

Misty-Eyed

Rachel - I hope it goes ok!! This surgery was my first.. So I completely didn't know what to expect! My recovery is going slower than I thought it would be, but I felt better after the surgery than I thought I would. Yes, I had my bum sewn up. I wish they'd told me about the discharge before the op so I knew what to expect! It's ok though. My bum doesn't really hurt too much anymore. I can sit on it. It just hurts if I stand still for more than 5 minutes. If you ever need to talk about anything, I'm always here!

Becky- I'm glad my thread helped you! That's one of the reasons why I made it :) I was just lucky in a way that I've had crohn's for so long so knew it may happen at some point. I'm glad that you're looking into it now though. I think all my mental preparation did me the world of good. If you ever have any questions then feel free to ask.
 
Gav

Gav

Porkpie84 said:
Reading these posts Terriernut, Nyx and Misty-eyed inparticular make me smile. Even on your worst days you keep a sense of humour and I think thats fab! :)
Click to expand...
I have to agree. The sense of humour around here is great, especially when people are going through some tough tough times. It's an inspiration to everyone. And it means that people realise things like a stoma really aren't the show stoppers they are sometimes perceived to be! :) :)
 
dreamintwilight

dreamintwilight

I think this thread and others like it are just amazing. Prior to being diagnosed with Crohn's, I had no idea it was possible for people to live with these types of procedures and surgeries. It really is amazing and I think it's great that there is a place out there where people can learn about colostomies, ileostomies, etc. without, like you said Misty, getting freaked out.

You guys are an inspiration! :)
 
Carrie630

Carrie630

The Prettiest Princess
So you say no one would want to see a pic of your butt wound, but you'd be wrong! lol. Seriously though, I understand the surgery and everything, but I've wondered what happens to everyone's butt. Do they generally take the anus and give you a doll's bottom (no hole!) or does it depend on how bad your guts are? If they do leave the anus, um, what did they actually leave?! is there a rectal pouch hanging out inside? do they connect it to something for drainage?
 
Terriernut

Terriernut

Moderator
I can catagorically state that Michelle has a nice ass! :ylol:

With a panproctocolectomy they remove the entire colon, the anus and the rectum. Most people who have this particular op have diseased anus and rectum, and have failed treatment to correct them. Never mind a diseased colon as well!

This would leave us with a permanent ostomy. The 'bag'. This is not a bad thing I might add!

Personally, I have a colonostomy, my sigmoid colon has been removed. I have my anus and rectum still left, and mine may be reversed at some point. Only becuase my rectum and anus is still there. Panproctocolectomy is permanent, and cannot be reversed.
 
Misty-Eyed

Misty-Eyed

Thank you Marisa. A lot of this forum is rather depressing and sad because people (naturally) come here to vent and in their greatest times of need for support. There are positive sides to it though and obviously stories to be told with good outcomes. People just find this disease so embarrasing that it's hard to talk or show things. Obviously I don't care much. You should hear how much detail I go into with people I know that are curious about my op lol. Being open takes away the whole 'unknown' about it though and people are scared of the unknown! This place is a life saver for many people though. It certainly helped me come to terms with my op because I could see how other people with bags coped and what problems they faced :)

On a side note, this forum gets confusing with my username being misty and the actual misty lol!

Carrie - I've not even plucked up the courage to look at it myself via a mirror! I had horrific skin tags before that they said they'd take off but didn't to help with healing and it seems way worse now! There may be a chance that it all goes down but we shall see. (Misty has only seen my bum with my clothes on! Lol )

Also, it's an interesting question. One which I may know more on when I see the surgeon on Wednesday. I was under the impression that they cut the entire anus out from my surgeons earlier remarks of the skin tags being in the cutting area. I have since obviously realised that I still have the skin tags and I can squeeze my anus muscles!! Like the ones that hold things in or let them out! After the stoma nurse told me that it looked like I still has a bum hole I was horrified and thought they'd done something wrong! Luckily I consulted a fellow member on here that reassured me that they only take out one of the anal sphincters out and that it was normal! Wether or not this was their original plan, I shall find out!


In other news, it's exactly a month since my op now. It's flown by! The pain in my side has suddenly gotten a lot better and Ive lowered my pain killers. My side is still hard to touch but that shall be looked at on Wednesday. Just tired a lot still. The sickness is much better too!!! Ooo there is light at the end of the tunnel!
 
Carrie630

Carrie630

The Prettiest Princess
You have me thinking about the sphincter muscle thing. When we clench to hold in pee, are we using some of those same sphincter muscles? seems to me thats what I'm clenching, but who knows. I look forward to hearing more about your bum hole! I can't help but be curious I guess :)
 
Terriernut

Terriernut

Moderator
(Misty has only seen my bum with my clothes on! Lol )

This is true...I've seen nothing, nothing at all! I am not, nor have I ever been naked with Michelle. :ylol2:

Misty, my real name, to protect the innocent.
 
Misty-Eyed

Misty-Eyed

Lol Carrie you have me sitting here on the sofa trying out all my muscles! But no, you have one for your pee hole, ones for your vagina (pelvic floor muscles) and your bum ones. They all feel similar but you can squeeze them all seperately. I just did it lol. Being curious is never a bad thing!

Lol Misty. You make me chuckle!
 
Terriernut

Terriernut

Moderator
Yes girls, excercise those muscles!!

Michelle, thats what I'm here for...chuckles. Laughter is the best medicine!
 
Emily

Emily

Location
Pittsburgh, Pennsylvania
Haha dex! Seriously, this is so interesting. Michelle, your stoma is the first I've seen ever. I'm so curious about it all. When people say that their anus was removed, I, like Carrie, also don't really get what it means. Let us know after the surgeon visit!
 
Misty-Eyed

Misty-Eyed

Dex - the more a man knows about women the better, in my opinion!

Anyway today I had my appointment with the surgeon. It was my biggest outing since my op as my hoosital is an hour away and the seating was hurting bum quite a lot. Didn't see my surgeon. Saw some guy on his team that I have never met before. So this is where it all started to go downhill. I was upset not to see the surgeon and not only that but the other doc from his team that was doing the clinic was actually someone I'd seen every day while I was in hospital and she was nice. Wish I'd had her.

So it was all pretty awful. Not helped by the fact that I didn't sleep much last night so was feeling emotional anyway. He didn't mention the fact that I'd lost so much weight and trying to explain how I'd been was hard. I've been pretty bad up till this weekend and he seemed to only care how I am right now. My side is still feeling hard and when he felt he he just kept accusing me of not relaxing when he felt that side but said I relaxed when he felt the other side because my stomach was soft that side. I tried to tell him that I was completely relaxed but he was really winding me up. It really does take a lot to wind me up too. I'm a pretty laid back person. He checked out my stoma through my bag and was digging around to check I didn't have a hernia. What I didn't know until I was waiting from my blood test was that he'd actually made a leak at the top of my flange and I had output all over my top. Well this nearly finished me off. After my blood test I went into the toilet to change my bag and had a good cry. Not really what I wanted on my first large outing. I don't want to be paranoid that I a going to leak every time I leave the house now even though I know what caused it.

He also looked at my bum and I don't even know what he said about it, to be honest. I told him about all the discharge coming out of my lady hole and he wants me to get a pelvic ultrasound before they see me again before Christmas. Apparently an ct scan would of been best but he's worried about radiation levels at my age. I don't think one ct scan would hurt. Now I've got to deal with some ultra sound probe being stuck up my lady hole to see what's going on. Even though he thinks it'll heal by itself. I just got tired of him looking over my notes when I could of seen someone that knew what happened because they were there. Also he says that my skin tags are always going to be there. Ugh I'm not in a good mood now :( I'm sure I'll feel better after some sleep.

The good news was that my path results just came back with active crohn's.

Oh and I did ask him about the bum thing. He said what I said before. They just take out the internal involuntary sphincter and the anal canal and leave the outer voluntary sphincter.
 
Terriernut

Terriernut

Moderator
:stinks: Horrible appointment! I hope you can at least get in to see your GI very soon, and another appointment with the surgeons who KNOW YOU and what is going on!

You are soooo nice!! I think being nice to folks like that isnt worth your time! And to check for a hernia...they dont NEED to probe. You lay down, you cough! Not much poking around required! The twit!!!!

Huuuuuuuuugggggggggggggggggggggggggssssssssssssssssssssssssss
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Misty-Eyed

Misty-Eyed

I wasn't being nice to him though. I was getting really annoyed. Unfortunately me being upset has also now worried my mum. But I know that I'm getting a lot better now so there's nothing to worry about. Ughh.

I just couldn't believe it when I felt the leak. Thank god I packed all my supplies and pre cut my bag before leaving the house. I guess it was good practice for public changing.
 
Terriernut

Terriernut

Moderator
Its always good practice to have everything with you ready to go. (and you know why after my little episodes this past week!)

I'm glad you werent being nice to him! You go girl!! Scorpio's...sting in the tail! Have a good evening. Shame we have to deal with twits all the time, but there are certainly alot of them out there. I can only hope that someday Karma bites them in the Ass!!!
 
Gav

Gav

Michelle,

So sorry to hear your appointment went like that. I had a similar experience to yourself, although not quite as extreme :( :(

I hope you feel more relaxed today. It's still early days in recovery and as you've said you are feeling and getting better.

There will be leaks in the early days. I had plenty. You will soon find the right bag and the right accessories to use to make sure you don't suffer anything like that again when someone prods about with the bag and stoma.

Gav
 
Misty-Eyed

Misty-Eyed

I'm going to email the surgeon's secretary to ask if I can not see the same guy next time and maybe see if I can change my ultra sound to a CT scan. I don't want things probing me anymore. Had enough of things probing me. I get rid of one hole to probe and they want to probe another!

I am feeling better today, thanks Gav. For some reason I can only feel down and sorry for myself for one day. My early night never happened. Couldn't sleep till 3 again and only had 9 hours sleep in 2 days! My bag always wakes me up at 8 and then I find it hard to go back to sleep.

I think feeling better has made me realise that my new normal was different to the old normal and the problems I face now I can't exactly talk to people about like I could with my stoma. No one really wants to hear about my leaky vagina and horrible bum. Well, no one outside of this forum anyway.

The good news is that I spoke with my boss today and I asked if I could start doing a few hours of work each day from home so that should keep my mind of things.

In regards to the leak, it could of been a lot worse. Luckily it was at the top and that's where I usually have problems, if any. So at least gravity works for me there. I had a tiny flange on - made for 30mm max, which probably did it. I think I've been very lucky compared to some people in terms of leaks. I've not honestly tried any style of bag that's caused any problems yet.

Also I put on a sweatshirt on today that I've not worn since before my op and it looks like a large, oversized dress on me! lol. And my legging things are all baggy! Do I buy new clothes or just wait to put on the weight again? hmm
 
Carrie630

Carrie630

The Prettiest Princess
I was gonna say, you can always talk to me/us about your vagina and bum troubles! I don't really have anyone to talk about it either. I tried to show my wife your stoma video the other day.. she didn't even make it to the cool part where it starts wiggling. She'll totally listen to me talk about my health trouble (and she'll try to humor me looking at stuff that squicks her), but it's hard because I know it squicks her out.
 
Terriernut

Terriernut

Moderator
Michelle, I am so glad you are feeling better today!

Its strange you are talking about new normal, and sleep patterns. It isnt something I discussed on here after my surgery. But yes there is a new normal after a stoma. And for me though I found my sleep patterns and everything else that had changed...eventually got back to normal again. It took awhile, and it happened after I was back at work. So, about 4 months after 'the day'.

And yes you've definetely lost weight, but you still look amazing! You will put it back on, but if you ask me (a GIRL!) of COURSE you need to go shopping!!!!! When do you wanna go??!

Your GI appt is coming up too isnt it?
 
Misty-Eyed

Misty-Eyed

You can talk to me Carrie. Love the word squicks! Never heard it before! My man friend is brilliant with everything but he doesn't want to see my stoma. He didnt even want to see my colonoscopy pics!! Just hope he never sees my stoma accidentally because he would freak out. You saying about the cool part makes me chuckle!

Haha Misty. Believe me, I have no actual wish to put the weight on but I'm realistic and I know how much I usually love food so..
 
Terriernut

Terriernut

Moderator
You can talk about ANYTHING here...thats why its such a wonderful place!

I personally think stomas are uber kuhl. Amazing what we can do now with surgery. Just think....not too long ago, we'd be dead with Crohns at an early age! I think Stan is pretty cool. I think Michelles looks very young and happy! Soon it will display it's personality. Then Michelle, you will know what to name it.

And Michelle, soon you'll be able to eat everything but 'wheatberries'.
 
Misty-Eyed

Misty-Eyed

Lol my sister was just making fun of me using the term output and ran around the living room saying I was stinky because of my output. Then I told her she wouldn't say that when I poured my choclately sauce goodness of my output into her mouth when I empty my bag when she's sleeping!! Now my stoma is making little noises and my sister told it to shh and then farted. What kind of a family do I belong to!!!!! I do still get bad urges to fart though :(

My stoma is young and happy. Especially earlier when it puked a great dollop onto the bathroom rug! Whoppppsss!!! Lol. It's just weird how it's noisy one min and then later it'll let out loads of air and output completely silently!

But yes, no wheat berries for moi!
 
Terriernut

Terriernut

Moderator
Output is SUCH a polite word isnt it?? But as you know, young stomas are noisier and a bit busy compared to when they settle down.

Of course as you have met Stan...he's noisy when he pleases. He particularly likes YOU! But no, they do as they please these stomas. You just get to know them a bit and then know what to expect. With Stan, I eat...he's NOISY! Immediately! But I've gotten to know him. You will get to know how yours is. And yes...the quiet gas is always better. The pffft. I can hide a pffffffft. Its the RIIIIPPPPPPPPPPPPPPPPPPPPPPPPPPPPP, oh dear. But yeah, you get to know what to eat, what not to eat, and when that sort of thing is likely to happen. Then you smother the little bastard so no one can hear him!!

Threatening a chocolate coating is always good!
 
Carrie630

Carrie630

The Prettiest Princess
Squicks might be a somewhat local (or US?) term, not sure. I always liked it though, you know what it means just by how the word sounds! I understand how a stoma could be unsettling to look at, but it's just another body part you know? Some body parts are a little weirder than others, that's all. The fear of "The Stoma" is probably way worse than it could ever be in reality.
 
R

Rl_gardner

There r times my husband and have laughed so hard at the noise's mine makes :) my little girl is very intrigued and likes to have a good look when I'm changing my bag sometimes she asks where her 'percy' is :)
 
Terriernut

Terriernut

Moderator
Hee heee!! Yes, they can be 'talkers' cant they?? I think its mostly amusing, but only when I'm at home!
My oldest grand kid thinks it's a hoot! But he's 10, so he think all these things that make rude noises are great.
 
Misty-Eyed

Misty-Eyed

Haha aww that's nice that your little girl is intrigued. Makes for a healthy attitude later on life!

The air is literally silent, misty! No pffft's or anything! I think most of the time when it makes noise it just a little bit of air coming out mixed in with some watery output which makes the noises.

How long will it be before my period starts again though? Ladies, any idea? Not that I mind, just curious.

Oo also Misty, I wanted to ask you. Do you always use a small bag in the day and large at night? Does it feel like a waste only using a bag for half a day?
 
Terriernut

Terriernut

Moderator
Michelle, it took mine a good 4 months to start up again. Not that I missed it! Then the hernia surgery I had, it stopped again! Just had it again last week of October.

As for bag changes, I dont always have a small in the day and large at night. Sometimes I'm just too lazy. I leave it midi sized day and night. I have noticed however, the longer after the op, the less output I have. (well, I'm flaring again now so the output is worse) I'm on a normal size bag for last two days for instance. I really just like the option of being able to quickly change. Bear in mind I work with the General public normally, so I have to be quick. No nice toilets and breaks. So, small during the day and bigger at night suits me.

As for the pfffffftt. I can 'feel' the pffffffffft, but I dont think anyone can hear it. At least, they dont admit to it!!! :confused2:
 
Misty-Eyed

Misty-Eyed

I just asked because I'm wondering what size to order when I get some two piece stuff. I just saw how much they cost! £80 for 30!! Thank god for the NHS!

And how weird. I can't feel anything at all! I have no clue when anything comes out. Makes for a big shock sometimes when I get up and find a balloon attached to me lol.
 
Terriernut

Terriernut

Moderator
Bear in mind mine is a colostomy. So I have more feeling intestines. Also, you really do get a feel for things going on with your stoma. Not that you feel your stoma (if you do somethings wrong!) But I can feel gas building up and coming out. Not always audibly. (thank God!) I can feel when the poo is coming. You can feel a pressure like coming...and whoop there it is! As you go off all pain killers and start eating more, you will get a feel for these things. And you will know what your stoma likes and doesnt.

For instance...all I need do now is pick up an ice cube and Stan will hide after the ice cube experiment last month! I swear to god stomas have a brain and personality!

I had to go to a two bag system when my output was really high at night, and hardly any during the day. Also, I had no loo at work that was private. It was in a showhouse! (with over 100 visitors a day!) As I'm not allowed lunch breaks or anything, and I have to look fabulous, only a small bag during the day. I could relax and be 'human' at night and actually eat...and thats when my output would get 'busy' so bigger bag at night...little bag during day. I was lucky to pee let alone empty at work. You just wouldnt believe. Anyway, no I stick to the midi's most of the time now. But I changed sites so it's more reasonable for me now to be HUMAN. Still dont have a microwave or anything though!
 
Nyx

Nyx

Moderator
You girls and your lucky break from your period!! I had mine while I was still in the hospital...and it's been normal ever since. I wish I'd have gotten a break...lol
 
Terriernut

Terriernut

Moderator
Rl_gardner said:
I'm intriguged.....What's the ice cube experiement??
Click to expand...
We tried ice cubes to make our stomas stop output while we were changing bags. Stan decided to hibernate. Had to warm him up by the fire to make him come out again. :lol2: It didnt stop him from spitting though! (Actually I think that was one of the times he actually hit the taps he was so mad!)

Bananas and marshmallows work much better!
 
Misty-Eyed

Misty-Eyed

Well I came off my pill before my op too. Been on it for just over 10 years, so that probably didn't help with matters. At least I know I'm not preggers! Although did you read about that women who had surgery and didn't realise she was pregnant and wanted to sure the hospital? Can't remember if she had or what happened with it.
 
glum chump

glum chump

I got my period the day after my surgery. Grrr. It felt like I was leaking from every part of my body. But then, I didn't get my period for three months. Now, though, it's back. Age wise, at least, I'm creeping closer to menopause, and I'm looking forward to it.

Michelle, have you been watching that show called "I Didn't Know I was Pregnant"? I don't think I'd want *that* kind of surprise!

And yeah, the ice cubes don't do anything for my stoma. If anything, I think he takes it as a personal challenge to see how much he can produce. Jerk.

Kismet
 
Misty-Eyed

Misty-Eyed

I made sure I had my period the week of my op so I knew I'd be ok afterwards. I wonder what they do if you have your period during the op?

No, I've not seen it! A friend of a friend didn't realise she was pregnant till she gave birth. She's in her last year of uni and her parents said they'd disown her if she adopted it. They are looking after it while she's finishing uni. Poor girl is messed up now. My friend had no idea till she had a suicide attempt. :/
 
Misty-Eyed

Misty-Eyed

So another update. Today has been rather eventful. Went to my grandparents with my mum this morning for a few hours which was nice. Till I realised I got my period!! Grr. Blaming my sister on that one as she asked me last night if I had it yet.

Then I got home and had a nap. Wanted to have a shower and wash my hair as going to my friends house tonight for my first proper social outing. Decided to do it after my nap though was so tired. Then woke up to this warm trickling feeling down my stomach. UH OH. I had a leak from the top again. Luckily I guess my week spot on my seals tend to be at the top so it would only come out when I'm laying down. Made a huge mess of my sweater but it could of been worse, it could of gone on the sofa had I not woken up.

So I put on a clean bag and had a shower. Ideally wanted to change my bag AFTER the shower and didn't want it to get wet so I had the genius idea of making my bag a shower cap. Just got one of the bags that the disposable bags come in, stuck the bag on me into it and tapped it around me with surgical tape. Worked a treat, although obviously it wasn't reusable.

Now I've put some jeans on for the first time and only my smallest of skinny jeans fit but they are fine around my stoma. My dad has taken to calling my stoma mini me. He said I just need to draw some dark hair and a face onto my bags :/ Resorted to wearing one of my smaller bras and put my contacts in for the first time since my op which is weird but good.

Still so tired though and not going out for another few hours. Might try another nap. Worried about another leak now though! The skin around my stoma looks red raw in some bits and looks like the skin is pealing away? So put on one of the mouldable seals that Misty very kindly gave to me a few weeks ago which has taken the pain away from the skin but the top of the flange now looks like it has a crease in it! Stuck a load of surgical tape on it and going to hope for the best.

Oh bollocks, just remembered I can't nap in contacts..

Oh also, been eating marshmallows to thicken up my output which works well apart from turns my output to a really light colour and it feels like liquidised marshmallows in my bag! So weird.

Hope you are all well.
 
R

Rl_gardner

You've done loads today you will sleep well :) when my skin is sore I use the barrier wipes which are good just leave 30secs before sticking ur bag.
Which hospital did you have your op at?
Hope you have a lovely time with your friends!
 
Misty-Eyed

Misty-Eyed

I just ordered a stoma collar!! Doesn't that sound fancy? Makes it sound like a dog lol. What make are the barrier wipes? It's just right around the stoma where it hurts when I have the bag on. Like a sharp pain.

I had it at St Mark's in Harrow as that's where I go for my Crohn's. Where do you go? I might get one of the stoma nurses there to check out my stoma on Tuesday as I'm there to see my GI. I'm not off my painkillers yet so can't drive to see one of the local stoma nurses.

Thank you! Not seen her since before my op as she's been down and didn't want to bring me down too!
 
R

Rl_gardner

I'm at university college hospital in London they are very good there.
What's a collar?
The ones I use are Coloplast from charter healthcare they r non sting I think there is another cream u can get too they can send u some samples. These ones remove all traces of the glue so the skin is clean. I woul def c the nurses they have lots of tricks :)
 
Terriernut

Terriernut

Moderator
Michelle, sorry, I was at work today and was really busy!

The convatec powder works really well when you have sore skin around your stoma. But any powder helps. Those barrier rings are really helpful. Are you putting cavillon on? (my iphone will NOT let me type cavillon!) I have some more rings if you need before then?

Did Debbie give you any powder? Glad to know you are seeing the stoma nurse. And also, to let you know, Debbie and Heather will come and see you as needed! If you are having issues, just give them a ring and they will come round. They are very good about that!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
So sorry about the leak! They are going to happen unfortunately, and that wont help with your sore skin either!
I hope you have a good night.
Misty
 
Terriernut

Terriernut

Moderator
Aw, Michelle, go out, take it easy, go home when you feel like it. But I can say getting out and about helps alot.

The stoma collar looks cute! I've seen them, but since Stan hangs out alot and is a teapot I've not ordered one.

Have a good night!!!!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I wondered if there was something like that collar available. I hope it gives your skin a break:) Does it only stick to the skin around the outer edge?
 
Misty-Eyed

Misty-Eyed

I have no idea, Mark. To be honest, the broken skin bit is only a few millimetres large but as it's broken skin, it's painful. It only seems to be on one side too although I have a purple like lump on the skin on the other side. I'll see what it looks like a bit later when I change my bag and see if it looks better from using the ring. I may take a pic if I'm still a bit worried.

In other news I feel like crap! Not mentally though, thank goodness! (Mark, I again apologise for all the girly talk that I am about to talk about).

I had a brilliant time last night. I swear my friends thought I'd had nothing done. I was completely myself and had a good time. I was exhausted when I got home but I could NOT sleep. It was awful. It got to about 4am and my stomach was gurgling away and my stoma was very active. Think I ate too many crisps and marshmallows too as my output was like concrete! Managed to get to sleep about 5 but kept waking up and got up a few times.

STILL exhausted and tried to have a nap but nothing. Not only that but my period is in full force. Period pain that even my tramadol won't help. I guess it has been my first natural period in 10 years but still! Plus I remember why I love tampons so much. Period mixed in with discharge is gross. I want to use tampons again so bad! I feel like a horrible grouch. I am going to take a nice relaxing bath (well hoping it will be nice and relaxing!) and see if that helps.
 
Terriernut

Terriernut

Moderator
I am so happy you had a good night out...It really does help mentally doesnt it? But I'm sorry you arent feeling good today. When periods come back, as I've said before, they come back ANGRY dont they?

I hope you are getting some rest.
:hug:
 
Misty-Eyed

Misty-Eyed

Well i think I found out why my skin is breaking down! My stoma is now 28mm! (Misty, Debbie wanted to get all my bags pre cut 2 weeks ago- good job I said no!) Also had output under the mouldable ring so didn't put another one on. The bag doesn't hurt today without it though so maybe the smaller size has helped. One thing though.. I now have a small and very raised lump on the purple area!!! So still need help from the stoma nurses. :/

Yes, they do Misty! My bath was lovely though! Now have my clean pjs on and have a clean bed tonight. It's only 6pm on a Saturday night. I'm living it up lol
 
Terriernut

Terriernut

Moderator
Oh, good thing they werent pre cut! Silly to have alot pre cut while the stoma is still shrinking!

The lump doesnt sound so good. Are the cuts in the bag really, really smooth? That is a benefit of pre cut ones. I recommend them once your wee stoma stops shrinking. I still have problems with the skin around my stoma. Having problems right now as a matter of fact! Ask Debbie to bring you some Convatec powder, it really works...and FAST. It has aloe in it.

As for the ring, there really cannot be any gaps. It has to fit really snug. Otherwise, yes, it's defeating the purpose. I had trouble with them until I got the hang of it. I can show you a tip this week if you want?

(Michelle...it's sunday night.....:ylol2:)
 
Misty-Eyed

Misty-Eyed

My thoughts exactly! I could have a box of 20 useless bags by now!

Yes they are. My stoma nurse at st marks was very impressed with how well I cut my bags. I have good dexterity. Just bad at telling what day it is lol!!! Plus the lump isn't right next to the stoma. It's slightly back a bit and the purple area is raised anyway and quite large!

I thought it was but obviously not! Had trouble with the dansac flange with them too as the hole is off centre so there wasn't enough sticky area at the top to hold onto my skin so I had to stick it over with sticky tape. Think you can get thinner ones which would probably be better. Will see how the collar goes though as well. Although will have to change the size of it now!
 
Terriernut

Terriernut

Moderator
You need that lump checked out ASAP. From the stoma nurses and the GI.
Dont want to scare you, but really have it looked at as soon as you can.
 
Entchen

Entchen

Chief Dandelion Picker
Just checking in to say hi and that I'm glad you had a fab time out despite some continuing issues with the new stoma (etc.!) -- take it a day at a time!
 
Misty-Eyed

Misty-Eyed

Thank you Entchen!! I am trying!

Saw the GI's registrar today and wasn't nearly as traumatic as last week! I only had 3 hours sleep last night though. Have bad insomnia at the moment. Can never get back to sleep when I get up to empty my bag. Annoying as I never used to get up in the night before. Also have to burp my bag at least twice in the night. Grr

So anyway. Apparently I'm dehydrated so he's put me on loperamide and omeprazole. Not sure why the omeprazole, any ideas?

He also said that as I've not has any crohn's in my small bowel for the past 18 years, there's a good chance I won't get it again! Read up on some studies in which there was only. 21% reacuurance after 10 years in people who had the same op as me. I think that's worth having a bag for!
 
Terriernut

Terriernut

Moderator
This is why I go for bigger bags at night with filters and midi's during the day. It does help you to sleep a bit more. Well, it did me anyways.

The omeprazole is for nausea and upset stomach. But take your calcium with it as I was told it sucks calcium from your body. Well, not taking with the pill, but take supplements at some point.

I didnt find it did a blooming thing for me, but perhaps it will help you?
 
B

beth

Omeprazole switches off your stomach acid production, useful for peptic ulcers, reflux, gastritis/etc. So weird use for it.
The biggest side effect for me was that it made my joints ache like a thing that aches a very great deal.
 
Terriernut

Terriernut

Moderator
Yeah, I cant get why they would give Michelle this???!! I was just given another prescription for it, simply because the GI said pred would cause me stomach probs. Well, I never took it. They gave me some while in hosp and again, did nothing for me, so I even stopped taken it there. My crohns is in the colon only, as is Michelles (rip colon) and I cant see it would do anything for her???
 
Misty-Eyed

Misty-Eyed

Yeah I know what it's used for. I deal with it at work and my dad uses it for his Barrett's esophagus. I should of asked yesterday but I didn't see it till I looked at the prescription form after I'd left.

The dehydration is LOADS worse today. Been taking the loperamide since last night. I woke up at 6 with very loose output so drank a load of water and took some more loperamide. By 11am I had a bag full of literally water :/. Took some more then, been drinking loads and now it's green water like it was right after my op. I'm drinking loads but feel dizzy and a bit out of it. I feel ok otherwise so I don't think it's a bug or anything. My stomach isnt rumbling or making loads of noises or anything.

Thank goodness I'm seeing the stoma nurse tomorrow!
 
Terriernut

Terriernut

Moderator
Powerade or Lucozaid might do better for you than water Michelle. You could really need the minerals with the big D. Especially potassium and magnesium. Do you have any supplements of those if you dont have the drinks on hand?

I think something else is going on too. Glad you are seeing Debbie tomorrow indeed!
 
Misty-Eyed

Misty-Eyed

Yeah I downed a bottle of lucozade as soon as I got up! Then had some smooth peanut butter on toast with extra salt on top lol.

My output loads thicker now, thank goodness!
 
ameslouise

ameslouise

Moderator
Hi Michelle - Just wanted to pop in to say hi. Hope the lump turns out to be nothing. Dehydration comes quick when you are missing your colon - stay on it with gatorade or smartwater -something to replace the electorlytes.

Keep us posted!! xo - Ames
 
Misty-Eyed

Misty-Eyed

Ames it's good to hear from you! This thread is rapidly turning into a story of my life lol.

My output reverted to liquid by the time I went to bed again. ARGHHH. BUT I did find out why he prescribed the omeprazole. Apparently as a proton pump inhibitor or PPI if you want to be fancy, it can reduce output by 15%! Which helps with dehydration. Mystery solved.

You know how some people (or us crohnies when we lose our appetite) don't really like eating food and don't get much pleasure from it? That's how I feel about drinking. I could easily go the whole day without drinking a thing. And now I have to drink loads and it's so hard. UGH

I'm so impatient for my body to adjust to not having a colon!!!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Misty-Eyed said:
I'm so impatient for my body to adjust to not having a colon!!!
Click to expand...
That's an interesting statement Michelle. I'll show my ignorance here I suppose but is there an expectation that your body will do that? Beyond the obvious colonic function, are there others that the body will eventually shift further up the gut? Absorption of anything??
 
Misty-Eyed

Misty-Eyed

It's not something I'd thought about really till the Dr said it to me the other day, Mark.

Apparently your small bowel can adapt to the electrolyte loss by as much as two thirds than it's original capacity. I think that's why they say you should only try to have a higher salt intake in the first few weeks. After that the western diet has enough salt in it anyway. I also think the kidneys adapt with the sodium/potassium concentration which is why people with ileostomies are more prone to getting kidney stones.

The human body is amazing though. Did you know that your if you have parts of either your duodenum or jejunum removed the rest of your small bowel can adapt to their functions, but if you have your ileum removed, it can't? So interesting.
 
littlefreebird

littlefreebird

michelle, you will find that sometimes output is like water, other times like toothpaste, i haven't discovered a link with consistency and what i eat, output is different every single time lol. i think its perfectly normal, i don't really give it a second thought or try to correct it with certain foods, it usually changes agian after a few hours.

also, did you ask about the lump yet? i had a small lump and it turned out to be a little granuloma, i had it burned off with an acidstick. glad to hear you're keeping well anyways!
hannah.x
 
Misty-Eyed

Misty-Eyed

Well this is why I wasn't worried before, because my output was always a little watery in the morning and then thickened up during the day. But my blood tests showed I was dehydrated then the next day when I had an entire bag full of water I felt awful. My mouth was so dry and I was dizzy etc. I'm doing better now so it's ok.

Yes, I saw the stoma nurse earlier on today and she thinks it's a stitch underneath my stoma that is causing the problem and maybe a bit of infection. She said it doesn't look like it needs antibiotics but I need to go to the docs tomorrow anyway as it looks like I have a UTI which will need antibiotics.

I did mention to her that my seal keeps coming open at the top of my wafer and she's given me this soft convex 1 piece bag by pelican to try out. It feels good but comes up higher than I'd like but worse of all, under the fabric cover, the bag is transparent!! AND the cover makes a gap really easily! I don't want to look at my output all day, thank you very much. Can you imagine how unsexy that would be in intimate moments? Having your partner getting peaks of your stoma plus output lol. I'm going to have to find some alternative!!! Not that I'm thinking of actually getting intimate yet!

I did drive for the first time today though which was excellent!! Missed my car! Also went out to lunch with a friend. Everyone seems to like my weight loss and everyone comments on how good I'm looking and that you can't notice my bag at all. Success!!!

How are things with you, Hannah?
 
robbo87

robbo87

Hey misty, only read the last part of this thread but in regards to the dehydration and watery output. I drink very little as i have a similar problem, My output is very variable, will be really watery in the morning because ive gone all night if not longer without eating. And i was prescribed something called dioralyte, which is a sachet that you add to water and contains all the stuff and electrolytes you need to rehydrate you. sorry if this has already been mentioned im being a lazy reader today..., The lucozade sports hydro drink is great aswell and ive had that in the past, but the bog standard lucozade that is loaded with sugar isnt to great...

Every morning for a good few weeks after i came home i would wake up with a painfully dry sore mouth gasping for something to drink, but eventually it all seemed to balance out and i seem ok now only drinking the odd brew and can of pop (i've been told i shouldnt but we all need a treat!...)

Great to hear you are driving again!... For me driving again was the one thing that made me feel like i finally had my life and independence back.
 
Misty-Eyed

Misty-Eyed

Thank you for that link, Cindy! Can we have a pic of you in it please? Only joking! :p Well I am certainly ready for it. I have been for weeks. it's just my poor lady parts that are still recovering :( I think they shall be one of the last things to heal! Sods law, eh? I spend hours looking for a UK supplier of something like this;
or in lace or something. High waisted underwear isn't really my thing. Plus it's kind of useless if you have to take it off!

Thanks Martin! I've been putting off drinking dioralyte as it's so gross. I think if I got that bad again then I'd have to. Have been drinking the lucozade sport ones too.. the isotonic ones. I was told that drinking a few cups of tea a day was fine. Avoided coke so far because it's fizzy but apparently flat coke and a packet of ready salted crisps are also a good substitute for hydration mixture. woo!

Yes driving is great! Especially as I love my car. I'm feeling so much better today yey!!! Just tired a lot!

Also, that pelican bag was crap. One side near my belly button had come completely unstuck by the morning and when I changed it, there was a patch on the wafter where it had leaked and dried up. Grr.
 
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