Not sure what it is! update

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shazz

shazz

Joined
Nov 14, 2011
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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.
 
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
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
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!! :ybatty:
 
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.
:hug:
 
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!!
 
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!
 
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.
 
No, you cant go on like this! They'll have to do something for stumpy! Your profile pic didnt update dangit.
 
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.
 
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
 
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.
 
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.
:heart:
 
By the way....so help me I'm gonna come visit you this summer...so you better be ready!!
:ylol2:
 
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
 
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.
 
Terriernut said:
You will! I'm bringing Michelle, and LMH too! Paaaarrrrrtaaaaaaaaaayy!
Click to expand...

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!!
 
She is gorgeous!!! So big already. Hope you had a lovely party and the sun shone for her first birthday. :kiss:

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! :voodoo:
 
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.
 
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
 
:mad2:
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!
 
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!!
 
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
 
Clearly then the snail came first....right? :shifty-t:

When are you gonna get another GI ? You really, really NEED one!
 
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.
 
Terriernut said:
Clearly then the snail came first....right? :shifty-t:

When are you gonna get another GI ? You really, really NEED one!
Click to expand...

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!
 
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?
 
Thanks spooky.
Yeah I have UC. There was some confusion as to whether or not it was Crohns last year as some inflammation and scarring in my ti. All tests came back negative so i don't know!

The snails names are broccoli and cauliflower! My son named them.
 
Right that's it!!

I have just sat and watched 3 mouth ulcers come up in my mouth.
My left hip feels like its on fire and I can't get comfy, sitting, standing or lounging/laying down. My ears are ringing and have got the start of a possible migraine.
The area around my Ozzie stoma is also very tender and sore although he is working fine.

I might not do the foam tonight in the hope that i may get some sleep and be able to face tomorrow with the ability to make a decision.

I can't deal with this anymore and I will be phoning my IBD nurse first thing in the morning.
I think I have reasonably tried the stuff they have given me since this has been going on since week 2 post op! This Thursday I will be 10 weeks post op.

Enough is enough.
 
Damn right it's enough! And you need to get them to sort you out!!!

Please get in there and get some help :kiss:
 
Thank you.

I am so lucky that my IBD nurse is brill. She does phone me back really quick cause she knows I wont phone up unless its urgent.
Got really bad backache now!
I mean come on!! Really!!!
Will phone up first thing and let you know what happens. Probably wont see anyone till next week but things will be in motion.
Or it might be a case of a visit to the a&e. Not been there format few weeks. Bet they miss me!
 
I will only go to a&e over the weekend if things get really bad.

Have been taken in by ambulance twice this year already and really don't want to go again.
 
Good lord Shazz..

I really hope that you get some friggin' relief soon!! My heart goes out to you and hopefully there will be an end in sight... SOON!!

Sadie and I send big squishy hugs :)
 
Had a horrid night again!
Only slept for an hour.
It amazes me how I can go from not being able to stay awake to sleeping 5 hours in 4 days and still be able to function!
Must be getting used to it.
Have phoned IBD nurse and left a message. Will let you know what they decide to do with me.

Snail has laid another egg! Got 2 now!
 
NOOOOOOOOOOOOOOOOOOO

Don't want to.

Bet they wont though. Not with beds like they are down here. Was lucky to get one when i had my pe.
Even then i was on an orthopedic ward!
Everything hurts today. All my joints hurt, my head, back, my stomach and I am annoyed cause I had to take some morphine last night! Hate that stuff
 
Hi, Shazz,

you look good in this new photo. So pleased you got another egg, lol. In response to the post of yours, 2 up, i am in the same boat. Everything hurts for me too. Still can't believe they left you with no gastro bloke to be there monitoring you. ridiculous.
hope they get you sorted soon.
 
Thanks spooky.
That's what losing 12 kilos since the end of January will do for you! I needed to loose the weight anyway.
Sorry you are hurting as well. Where are you at in treatment and such?
Sucks big time doesnt it?
What is the weather like down in bude? Its sunny with really heavy showers here. Enjoying the sunshine in between though.
Even though it kills my eye
 
Yes, tis sunny up here in bude, thank god.

i get treatment at Derriford. have done since i came down here from sussex 28 years ago. seen plenty of gastro blokes come and go, lol. was down there in endoscopy two weeks back.

I have a liquid diet through a tube in my abdomen into stomach, (peg) and i remain hitched up to that for 20 hours a day. totally cumbersome, but extreme fatigue and pain and loo visits so can't do too much anyhow. little bit on the housebound side really.

colonoscopy revealed severe stricture with ulcerations and bleeding, so nothing new. this is small intestine, bowel looked normal which is some good news

this crohns palava has been going on since i was 12 years. its the big 50 this year. not really known it go into remission. wish to god this website existed when i was younger. lived in rural village with no one and very little understanding from people locally. this site is a godsend,
 
I only live 10 minutes from derrfiford!
Small world!

Sorry you are still having a hard time with everything.
I don't know where i would be without this site. Its a wonderful place for knowledge and chatting without having to watch what you say about your poo. Its made me laugh a lot as well. Love the jokes thread in the adult section! Its also really nice, if you see a thread and there iis aa question on there that you can answer, because you have been through it yourself and you know you can help someone else.
 
Still waiting for a phone all.
Feeling more horrid as the day goes on.
My eye is hurting so much can barely open it.
And pretty much everything else below the neck hurts.
It also now hurts to pee. Doesn't feel like an infection but it hurts at the end of weeing. Am still drinking plenty. Not really eating much, no appetite. A few salted pretzels and some pringles and cheese. I did have a banana earlier as well.
Hubby has taken boys swimming for a few hours so going to try to get some sleep.
Xxxxxxxxxxxxx
 
Thanks hun.
Am lounging on the sofa watching a film on netflix.
Going to have some flat cola in a bit to see if that makes feel a bit better for a while.
I dont think I am going to get a call back today now. Not sure what they can do anyway.
Xxxxxxxxxx
 
:facepalm:

Shaz I just cant believe you have no gastro doc.

I am going to win the lotto, come & get you, take you to a private hospital & get you sorted out once & for all.

You can take the snails too if you wish x.
 
Not brill spooky.

Just spoke to my ibd nurse and she has spoken to 3 different surgeons. All have refused to come near me for at least a few more weeks.
She is giving me some different suppositories to try and she is faxing my gp tp get me started on antibiotics.
We have decided to stop all treatment for 3 days just in case that stuff I am using now is aggravating it more.
I kind of thought that his would be the answer. I have to learn to live with it for now.
Really not happy.
She said the stomach an back pain I am getting wont be from this so i also have something else going on as well!
I don't know. Just want it all to go away now.
 
She has given me ciprofloxacin and entocort.

Not had either of these before.

Really hope they work. Don't know what else to do.
 
Must admit i despair at my own health sometimes, and drs, specialists etc seem to expect us to put up with it. so i have for years. but you are a new surgical case. can't believe things have changed. they used to keep an eye on you very regularly after surgeries. not so much these days. still, i suppose they know what they are doing.

good luck with the new meds, i hope they work for you
 
I had my surgical review. I walked in he asked me how I was. Looked at my scars discharged me.
He was a very good surgeon but i think they have to fit so many people in and then they have ward rounds to do.
Even after my pe i have had no follow up appointment. Nor do they want to see me again.
Its the way it is now sadly.
Will let you know how the tablets go.
Xxxxxxxxxx
 
Oh dear....I feel an ass whoooping coming on. And it's overdue Shazz. You NEED a GI, you NEED good follow up care, and your GP has to do it too. Your GP needs to be VERY proactive. And you do too. If you cannot do it(and I know where you are coming from) how about your sis?
 
My sis would but she live 55 miles away!

I will se how the entcort goes and the cipro.
I am giving this 10 days max.
No improvement then I will be on the phone again.
I do see where they are coming from. There is nothing they can ddo until they take the stump out. They wont do that until they are sure my pe is gone.
I have been discharged from my gastro doc cause i had op 1. I have been discharged from surgeon 1 cause he has done his job. Surgeon 2 wont touch me till my pe is gone.
Hence limbo land!
I am sure my pe has gone. The chest pain is nearly non exsistant, I can walk and talk at the same time and i can do a flight of stairs without passing out.
They wont scan me again though, costs too mmuch money, so wont know for sure.
 
Thank you coalition government! I would GLADLY pay more tax for the NHS. I dont mind trying to save money. But some things are sacrosanct in my opinion, and the NHS and it's care is one of them. And so are YOU!
 
That's what we say. My hubby pays enough of his wages in tax that you would hope to see some improvement but no!

Oh well.
 
At times I am a bit jealous of the NHS system you guys have there, and others I'm glad for the insurance that my husband and I have here!

That's crazy that they won't scan you again because it is too expensive!! You need a resolution to this problem so you can just get back on the freaking road to good health!
 
I feel soooo tired today but i am determined to get outside and do some things in my garden.

We grow most of our own veg and i have not even started to look into it yet this year!

Even though I cannot eat most of it I still like growing it for my hubby and the boys.

Am going to plant some lettuce, sweetcorn and some tomato plants today.

Don't worry, hubby is here and so are the boys. We all pitch in and do a bit each. I wont do too much, I promise!
I think i need to focus on something positive today.

Just had to get hubby to take the cat to the vets. Think he has been either hit by a car or a dog got hold of him. He was in so much pain but he was still trying to climb into my lap fir a cuddle and he was purring at me! Hope he will be ok.

Will update you on everything later.
 
The cat had been bit by another cat the vet thinks.

He is still at the vets having his wound flushed out. Got to phone up at 2 pm to see if he can come home again.
Phew had visions of having to tell the kids he had to be put down!
 
Oh shazz I'm sorry about your poor kitty :( I hope he will be okay!

I think its good you're going to get out in your garden. For me, my calm "happy place" is sitting out on my lounge chair with a book. That nice warm sun hitting me just seems to relax my belly and my mind. Don't over do it and have rests when you need them!! Sending bunches of positive thoughts your way!
 
Kitty kat is ok. He has got a big bite wound on his left front paw. Its been cleaned out and we can go get him in a few hours.

Have been out in the garden for just under an hour. Planted some lettuce and 2 tomato plants.

Hubby and alex, who is much better today, are out there now finishing off my instructions!

I feel better for having gone out and done something. Really tired now!
 
I dont know why, but I'm not getting updates on the forum today!

Super glad you got out in the garden to direct! Very sorry about your cat though. Furbabies definetely keep us on our toes. How are the snail eggs?
 
Snail eggs are being kept nice and warm.
Really hoping they hatch.
Alex is really excited about having baby snails!

Am really knackered now. Glad I got out in the garden for an hour.
 

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