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Crohn's Disease Forum » Surgery » Stoma Subforum » Not sure what it is! update


 
04-09-2012, 09:55 AM   #1
shazz
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not sure what it is! update

It is definitely an ulcer.
I changed my bag the other night in the shower as usual and even my hubby noticed it. It is about 5mm big and white.
Am still hoping that its just medication induced though.
Have been able to eat more food recently which is good, mostly chicken, oven cooked in gravy, and mashed potato but its been ok. Still have some issues getting the food down but a sip of water sets it right.
Still having a horrendous flare in stumpy.
Am stil using the foam stuff they gave me. It worked really well for 2 days but then it was back to before. It is getting worse now though cause i have to get up in the night to go. Last night was the worse night since before my op.

Going to see the stoma nurse tomorrow so will see what she says about it all.
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04-09-2012, 11:45 AM   #2
Terriernut
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Oh Shazz, nooooooooooooooooo. I was hoping the butt facial would work.

And an ulcer is no good on your stoma. I bet the stoma nurse will get you right back to the GI.

Bless you hun
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04-09-2012, 11:52 AM   #3
shazz
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Thanks misty.

Was really hoping it was just going to be nothing.
Was so proud of myself as well. No longer on morphine or codeine - unless I really really need it.
Eating better and everything.
It might still turn out to be nothing but you know the run of luck I have had recently!

Still don't feel quite right either. Do you know what I mean? Can't say for certain what it is but just don't feel right.

Ah bollocks is all I can think of at the moment!!
04-09-2012, 11:59 AM   #4
Terriernut
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You've just had too much going wrong Shazz. And frankly, it took them too long to get on top of things.

If you still dont feel right (besides the flare and the sore..which hopefully you will be back at the GI for ASAP) Please go back to the GP and tell him. He sounds like a 'goodun'.

Even without the issues you've had, it still can take a good 3 months to feel like a normal person after the OP you've been through.
04-09-2012, 12:05 PM   #5
shazz
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Keep forgetting its only 9 and a bit weeks since my op. So much has happened it seems like a lifetime ago.

Have got an appointment to see my gp in a few weeks so have got that option.

I will see what my stoma nurse says tomorrow.

I can always ring my IBD nurse. She will get me in to see a gastro doc.

Just need to catch a break!!
04-09-2012, 12:13 PM   #6
Terriernut
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Yes, you definetely need a break!
04-10-2012, 09:16 AM   #7
shazz
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Yay! My ulcer has gone.
Ozzie is looking really healthy and has shrunk even more!
Just phoning the IBD nurse now to get stumpy sorted.
Even updated my profile picture!
Phew a bit of relief on one front at least!
04-10-2012, 10:08 AM   #8
shazz
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Ok just spoken to my IBD nurse.
She is going to speak to a consultant and get back to me. She has already said she doesn't know what they can do.
I suggested steroids but apparantly if you have had a dvt or pe taking them, even short term, can increase your risk of getting another one.
Hope they can sort something out. Can't go on like this.
04-10-2012, 11:54 AM   #9
Terriernut
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No, you cant go on like this! They'll have to do something for stumpy! Your profile pic didnt update dangit.
04-10-2012, 11:55 AM   #10
Kip1
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Oh Shazz I am so sorry that you are having all this trouble.

You have gone through bloody hell & I too think it took them too long to get on top of things.
What an awful time you have had.
I just hope & pray the next post you leave will be to say that you are feeling so much better & how things have improved for you.

Keep us posted.
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04-10-2012, 12:11 PM   #11
Misty-Eyed
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I get one or two ulcers on my stoma at times but very much doubt it's my crohn's because I'm very well otherwise. I just thought it was because I lay on it a lot and it probably rubs on my bag. After all, an ulcer in your mouth doesn't mean you have active crohn's in your mouth. I'll mention mine to the stoma nurse the next time I see her but haven't chased her for an appointment as I go to enough appointments as it is! Can't be doing with missing more work. Argh
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04-10-2012, 12:28 PM   #12
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Don't know why my pic didn't update. It shows it on my profile page! Is a nice photo as well, shows how much weight I have lost since the current pic!

Will try again.

They have phoned me back again and said the consultant said to try the foam at night and the suppositories in the morning.

I am very tempted to just phone them back next week and say it didn't work.

To be completely honest - i am so over and fed up of putting things up my bum and now in stumpy where they don't belong. I really don't want to be doing it anymore!
Know what I mean?

Will have a think over night and see how i feel in the morning.
04-10-2012, 12:33 PM   #13
Terriernut
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After all you've been through, I dont know if your wee body is up to another surgery to remove said 'stumpy' right now Shazz. In fact, everything contraindicates that! They need to find something else for the time being.
Like NOW!!!!

Go along and try what they say, but keep that IBD nurse on speed dial daily to update.
04-10-2012, 12:34 PM   #14
Terriernut
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By the way....so help me I'm gonna come visit you this summer...so you better be ready!!
04-10-2012, 12:35 PM   #15
shazz
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I know what you mean misty.

Will give it a good go and then see what is what.

Bloody photo wont upload. Have cropped it and made sure its not too big. Grrrrrrr

Will try again later
04-10-2012, 12:37 PM   #16
shazz
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By the way....so help me I'm gonna come visit you this summer...so you better be ready!!


Would love it if you could. Not sure I will ever be up to it though!!
04-10-2012, 12:45 PM   #17
Terriernut
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You will! I'm bringing Michelle, and LMH too! Paaaarrrrrtaaaaaaaaaayy!
04-10-2012, 12:52 PM   #18
shazz
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Better hire a hotel. Everyone can come to sunny devon!
04-10-2012, 05:30 PM   #19
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Have done my butt foam thing.

Problem I now feel really quite nauseous. Which really does not make any sence what so ever. My butt is not connected!
Am in bed and its where i am staying.
Getting really fed up of feeling like crap every time i use a medication that is supposed to help me.

Grrrrrrr and aaaaarrrrrggggghhhhh

There, rant over - for now.
04-10-2012, 10:35 PM   #20
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You will! I'm bringing Michelle, and LMH too! Paaaarrrrrtaaaaaaaaaayy!
oooh pick me!! I want to come



Shazz... you can freaking rant all you want!! You have seriously been through way too much. I really hope that you can get stumpy under control and start to feel normal again!!

sorry I've been gone for a few days and haven't checked in! So busy with little ms. sadie's birthday party and easter weekend.

big hugs to you!!! i really want you to get better!!
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04-11-2012, 03:43 AM   #21
shazz
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She is gorgeous!!! So big already. Hope you had a lovely party and the sun shone for her first birthday.

Had a horrid night last night. So much pain couldn't sleep or get comfy. Just dozed on and off all night.

Will keep going with the meds plan and see but not going to be able to take many more nights like that. Plus its really not making much of a difference. Had to get up 4 times last night.

Not a happy girl today!
04-11-2012, 10:01 AM   #22
shazz
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Did the suppository this morning and have had the most uncomfortable and painful cramps and pain ever since.
The pain is also making me feel sick. Have relented and taken a dose of morphine but its not really done much.
Thankfully my mum has taken the boys into town so just snuggled up on the sofa with hubby. He is home because he is working nights this week.
Not sure whether or not to continue with the suppositories or not. Not felt this bad before.
So want to feel better.
04-11-2012, 11:07 AM   #23
shazz
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My right eye is killing me today as well. Its really sore, its an ache but more than an ache. Somewhere in between a sharp and dull pain. Really blurry today. Course it would be relay nice and sunny and it hurts like heck!

Grrrrrr and aaaaaarrrrrrgggggggghhhhhh
04-11-2012, 12:27 PM   #24
Terriernut
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This cant keep going on! When is your next appt? What does the IBD nurse say? And how about the eye Dr, have you had a follow up with him?

You need to feel better sweetheart!
04-11-2012, 12:37 PM   #25
shazz
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Still waiting to hear from the eye hospital about my mri results.
IBD nurse said to try what i am doing and see how it goes.
My next appointment with any health professional is Tuesday to get my inr checked!
After that its 3rd may with my gp.
I am technically not under a gastro doc anymore. So stuck.
Will see how tonight goes. Can always phone IBD nurse again. She has always been brilliant.
Have now got sshooting pains going up through my rectum and in through my vagina as well.
It really does feel like i am falling apart bit by bit!!

On a completely different track my sons giant african land snails have laid an egg! So excited!!
04-11-2012, 12:43 PM   #26
Trysha
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Gotta hand it to you Shazz, in the midst of all your distress and discomfort, ------
you are excited about a snail laying an egg!!!
Didn't know snails laid eggs.
Feel better soon
Hugs and best wishes
Trysha
04-11-2012, 12:45 PM   #27
Terriernut
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Clearly then the snail came first....right?

When are you gonna get another GI ? You really, really NEED one!
04-11-2012, 12:48 PM   #28
shazz
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Lol Trysha. I try to find something every day that is positive. Some days is easier than others!

I never knew much about snails either. Until my sister bought my youngest son 2 for xmas. One is huge. Its shell is about 15cm.
04-11-2012, 12:54 PM   #29
shazz
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Clearly then the snail came first....right?

When are you gonna get another GI ? You really, really NEED one!
Misty we all know the chicken came first - not the snail!!

Will phone up the IBD nurse tomorrow and go get me a new GI doc.

I think i can definitely say the treatment is not helping, in fact the one I did this morning made me feel worse.

Oh well. Here we go on the nhs round about again!
04-11-2012, 12:55 PM   #30
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Hi Shazz,

i think its a bit early for you to be 'given up' by the gastro team. i'm seen every six weeks or so. You definitely need monitoring. i can't believe they've let you go. Am i making the assumption that you had ulcerative colitis? i think so, perhaps they feel they've 'dealt' with it now. Perhaps they only keep in touch with us Crohnies as its ongoing. Poss then its crohns if you have ulcers there in stoma. but they should be seeing you.

luv the idea of African land snails. what are their names?
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