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Blimey grumbly,
Let's hope you get fixed quick. If it is a simple bartholins cyst they are relatively easily fixed- drained and sort of turned inside out- called marsupialised ( always makes me think of kangaroos!!).
If it becomes more red and inflamed you should see your gp.
Won't be just as easy fixed if due to a fistula would mean remicaid +\- surgery.
Let us know how you get on.
 
Yes, Dexky, I think they have. :thumright: I had a pretty rough couple of days with stomach pains and D, which ironically I don't normally get, but things have improved. The 'lump' seems to have receded a bit too. Will still mention it to the gastro at the end of the month.
Thank you for asking :rosette2: How are you and how is the wee one doing?
 
On the up track again?

Jeez Louise - I hate rollercoasters - lol. They make me dizzy and :puke_r:
However, I think I may be on an up again.
The lump has gone and so has most of my stomach pain :yoshijumpjoy: Still the odd twinge in the pelvic area, but my urine is now the still rather than sparkling variety and I'm not peeing every two seconds!
Saw the GI today, and he's pleased too. Thinks the fistulas may well be healing and that the inflammation is settling down at last. Looks like surgery is still on the cards and it will probably be a resection. Just waiting for the appointment with the surgeon which he thinks will be quite soon.
I started tapering the Pred 5mg a week but he wants me to take it a bit slower and do it every 2 weeks. The Mesren and Aza will be for the long term and he'll only put me on the Humira if the Aza doesn't work, which is fine by me.
Feel better than I have done for a long, long time - here's hoping it lasts :)
 
Woohoo, fab news Helen! :panda::panda::panda:

Hmph...I don't like rollercoasters either...:voodoo:...been on them too much over the last 8 months. :lol:

I hope it lasts a very, very long time too hun. If it does come to you needing surgery it's good know that the healing that is taking place now should lead you to a more conservative resection. :)

Dusty. :heart:
 
Eeeeeeeeeeek!

A staff nurse from the hospital in Inverness just phoned me cos the surgeon's secretary had been trying to phone me today to make an appointment. I'm assuming that's for a consultation rather than going in for the op. Anyway, the secretary is going to call me back Monday morning.
Oh man, the butterflies in my tummy are so big, I am probably going get the sh......... :poo:
 
Grumbletum - sounds like you and I are following much the same path I'm currently tapering off Pred after a recent flare-up (whilst on 75mg of Mercaptopurine!). I'm in the "interesting" position that my Clinician is quite keen for me to have a resection - whereas the Surgeon seems to think that there are more "drug" options, namely Humira. I have to admit I'm leaning strongly towards surgery, and getting rid of my dodgy, troublesome bit of ileum - I hope everything all goes well for you, if the 'op' is indeed on the cards. Best wishes, Tony.
 
Thank you both :soledance:
That is an interesting position, Tony. If you decide on the surgery, will the surgeon agree to go ahead with it? It's my GI who is saying he thinks I need the surgery, so wonder what the surgeon will say. When I saw GI a few weeks ago I was pretty rough, and was like 'bring on the surgery', but I think the Aza has kicked in and I've been better in the last couple of weeks than I have been since this all kicked off. But GI still thinks I need a resection, and I think deep down I agree. Things are better, but I can tell there is still stuff there lurking in the background so no surgery now might be putting off the inevitable?
But I'm such a wuss ( Dusty, I can't remember what the Ozzie for wuss is : whingeing pom?!! ) I visit people in hospital, and the nurses want to put me in a bed cos I turn so green ( phobia :frown:)
Maybe I could have some pre-op meds.............like, now? :pale:
 
Awww Helen, I reckon there would be something wrong if you didn't have the heebie jeebies about having surgery! :hug:

Ahahaha Helen. Yeah whingeing pom...

I call my dad that and it really gets him going!.."I'm not a Pom, I'm a Scot!"

My response..."Ah hell, there isn't even a fence between ya!"

Dusty. :)
 
Lol, Dusty, my rock :kiss: You better watch out, or he might give you a Glasgow kiss! Depends where in Scotland he comes from, of course. Give him my regards - he's got one helluva daughter :heart:
 
Aw shucks, thanks hun...:blush:

No Glasgow kisses here, thank goodness! He is from Edinburgh.

Dusty. :)
 
Grumbletum said:
I visit people in hospital, and the nurses want to put me in a bed cos I turn so green
Click to expand...

Me too Helen!! I hate the places! I get jitters if I know I'm going to have to get a shot!! I couldn't imagine surgery jitters! Maybe a little self-medicating is in order:)
 
I confess! I have just swigged the best part of a bottle of red. And I ain't even got the appointment yet. Lol :)
 
I think with a little arm-twisting I can convince my surgeon to go ahead - he did actually say that he thought I was a good candidate, but thought we should exhaust the drug options first, something I seem to be doing quite rapidly! BTW, I'm not great with hospitals either, which is a shame as I've been in A&E quite a lot recently!
 
Here we go!

Spoke to the secretary today and they want me in this week for an inpatient assessment. Eeeeeeeek! She said he wanted me over on Tuesday, but she persuaded him to make it Wednesday so I can get things organised.
I thought it was just going to be a chat with the surgeon, but she says I might be there 3 days depending what tests they have to do. Hah, I still have a lot to learn about the rules of this game.
Guess I'd better go book my flight. Any advice on what the tests might be etc?
:sign0085:
 
I assume it is a pre op work up???

Three days is a long time for this though but as the secretary said it depends on what tests they want to run. Perhaps he will want to do scans and things to check on what is happening now which is normally done outside the pre op clinic, hence the extra time.

Aside from that they do things like bloods, chest X-Ray, ECG, anaesthetics work up, observations and load of paperwork. If it isn't pre op work up then I have just told you a load of *****! :lol:

Good luck hun and keep us posted!

Dusty. xxx
 
:ylol: Dusty, nothing you say is a pile of *****! Pearls of wisdom, m'dear, pearls of wisdom.
Yes, I think it must be a work up. She said to see if I'm OK for the surgery, which will be scheduled for a later date.
 
Thank you :rosette2: Would you know, it's blowing a gale today and foggy. Here's hoping it clears up for the flight tomorrow. I sort of don't want to go..........but I do too :yrolleyes:
 
Got here OK yesterday. So far, lots of forms, FBC and waiting to see the consultant this arvo. So won't make the flight home today.
 
Hope all goes well mate and you leave with solid answers! :hug::goodluck:

Dusty. :heart:
 
Well, saw the surgeon and he thinks the Crohn's and fistula are not severe enough to require surgery. So he's ordered a CT scan and asked the GI consultant here to speak to me tomorrow. Said my bloods indicate that I'm not responding to the Aza and that Infliximab should maybe be the next step.
GI is not in tomorrow, so I have to stay here over the weekend :-(
 
Coming in here to gatecrash...
Sorry you have to stay the weekend Helen, but am so pleased you don't have to go under the knife! Hope the Infliximab works for you- everything crossed!
:hug: xx
 
Thanks Welshy xx All a bit confusing as the docs here are telling me the opposite of the doc from Stornoway. Guess all will be revealed in time and I have to be patient - and I can learn a lot of patience from you, Andrea :)
 
Hi Helen,
It would be good if you avoid the knife and inflix seems to work well in a lot of peoples fistulae. I would wait for your Ct results though as they may change their minds again... You know what docs are like!!
Hope your weekend isn't too boring...lots of time to spend on the forum..assuming you have a good signal.
We could occupy you with jokes.
'what do you call a sheep with no legs?
A cloud !!'
 
LMAO at 'Patience' Helen! Its a virtue I think I'm missing, as St Dusty of Oz will so readily testify!!
Hope the weekend goes quickly and smoothly for you. Sending loads a love, and will be looking up some jokes to keep up with LilmissH ^^ xxx
 
Sorry Helen!
I'm always late to the party! My head's up me arse, don't know whether I'm coming or going!
It's good news you're not having surgery tho, hope you get the Infliximab! fingers and toes are crossed!
Chillax over the weekend luv and take care
xxxx
 
:boring:I am planning to escape to the shops! We have hardly any on Uist, so a little retail therapy is in order.
What do you call a man with a seagull on his head?
Cliff!
 
First up Helen...Welshy's middle name is NOT Patience! :ylol:

Okay, well I would tend to listen to a GI over a surgeon so it will be interesting to hear what he has to say. I don't think the severity of Crohns is indicative of the need for surgery but rather the fact you have a fistula and where that fistula originates from. If it is originating from your ileum I don't know that Remicade will cut the mustard.

Matt's CD was only ever judged by biopsy to be mild to very mild, it was the fistula's that made the surgery necessary. He never fully responded to Pred or Imuran either while ever the fistula's were there and I would venture to say that these meds coupled with antibiotics kept things on an even keel at best.

Hope I'm not scaring the poop out of you Helen! :eek2: I just want to tell you what our experience was.

Sorry to hear you have stay on over the weekend...:(

Much love, :heart:
Dusty. xxxxxxxx
 
Ya ain't scaring me Dusty xxx Not knowing is scarier. And I'd prepared myself mentally I guess for surgery. If it's inevitable, I'd rather have it done sooner. Interesting to see what GI will say.
They pissed me off cos they made me drop everything and come over this week and now I'm hanging around. But I'm not ranting cos nurses are lovely and it's not their fault.
 
Still in Raigmore! Have seen the surgeon a couple of times, still waiting to see the GI. Mr D says it looks like the fistula has healed ( yayyyyyy ) and that the abscess near my bladder is much smaller. But a loop of my TI is 'all yukky and horrible.' hasn't healed at all this flare which is why they want to go with Remi. May even get the first infusion today.
 
^^^^Ahahahaha....I don't think it works as well with an Aussie accent though! :lol:

Fab news about the fistula Helen! :)

Sorry to hear about the TI though. :(

I hope the Remi does the trick hun. How do feel about it?

Dusty. xxx
 
Tbh, I'm not sure, Dusty. I feel good - virtually no pain - but the surgeon says my bloods indicate the Aza is not working. He mentioned the white something count? Not WBC, something else. But I've only been on the Aza two months now.
 
White cell count is the only thing I can think of but that's the same as the WBC.

Hmmm, I wonder what the GI will think?

Good to know that you feel good though...YAY!

Dusty. :heart:
 
Losing my colonoscopy virginity

:ywow: Hah, how did I think I could avoid ever having one? Had a long chat with Mr Potts, the GI, who is very funny. Tum is still sore in pelvic area on palpitation, so he wants to go with Infliximab. Totally dissed the Mesren and says he might switch me to Metho-wotsit.
So here til Weds for appropriate tests etc. Ho hum!
 
So you will finally get your introduction to the silver stallion! :eek2:

:goodluck:.......with the tests Helen!

Dusty. xxx
 
Omg, what the hell is the silver stallion???
Yes, Beth, and I was telling DS to look for it on YouTube. I'm in Raigmore for the first time. Previously been to Stornoway for tests.
 
Now now, you two :eek:rder::eek:rder:
Yea, Mr D says Mr P will 'flatten' me!! They were going to do it tomorrow, then decided after brekkie for late morning today, but the Picolax hasn't got things moving yet, so late afternoon hopefully.
 
2 sachets of Picolax, gallons of water and plenty of cramps but no result, so they gave me an enema. Oh joy.....
 
Hope all has gone well with the scope.
Looks like methotrexate on might be on the cards for both of us. We may do the methotrexate journey together!
 
Is that instead of the Aza, Littlemiss? And how is your leg now?
Well, the enema got things going but not enough and they started the scope but had to stop. Of course, the Pico kicked in as soon as they brought me back up to the ward. So they're gonna try again tomorrow morning.
 
Let's hope it's more successful tomorrow then.
Leg healed really well and physio reckons I may be able to drive in a couple weeks.

Reg methotrexate - yes instead of aza but am hoping can get back onto higher dose aza as I felt well on it and I am lucky enough to avoid fistulae so far. I have more of an issue with big bleeds from the small bowel. My aza was reduced when in hospital and despite that my White cell count and neutrophils dropped really low last week so had to be reduced again. My crohns had not been good since the first dose reduction and has got worse so Pred increased up to 40mg again, iron infusions, blood tomorrow as hb down from 140 in June to 70 yesterday...
Gi said if my wcc drops again when aza put back up then he will go for methotrexate or biologics... But erring towards mxt. He is still hoping the aza will be ok again and its just my body saying it's had enough for a bit!
Good luck for tomorrow- it's all your fault for saying you were a colonoscopy virgin- now 2 in 2 days!!!
 
Oh yikes Helen! Sorry to hear about the false start mate...:(

Mega loads of luck for the next one!...:goodluck:

From virgin to pro in one fell swoop...:eek:utahere:

Cheers hun...:hug:
Dusty. xxxxxxxx
 
Now I see what all the hype's about!! Had sedation and was awake for the last part during which I'm sure I squealed more than I did in labour.
Anyway, doc doing it was pleased. Colon is fine. This is from report:
Ileocaecal valve is extremely inflamed and rigid. Mucosa: severe granularity. Could not canalise the TI but took some biopsies from the IC valve.
So will see tomorrow what Dr Potts makes of it.
 
Lordy, lordy, lordy they're a cruel bunch over there! :eek2: You poor thing Helen...OUCH!

Good to know the large bowel is clear. I wonder if they will do an enterogram to see how far the inflammation extends, just thinkin' out loud. :)

Good luck when you see the doc tomorrow, I'll be thinking of you!

Much love, :heart:
Dusty. xxxxxxxx
 
What's an enterogram, Dusty? Is it a CT scan? Please tell me it doesn't involve things up the bottom. Lol x
And thanks you lot for seeing me through this xxx
 
Breathe easy Grumble! :yfaint:

It is a type of CT scan, can be done with an MRI as well. It is different to a normal contrast CT in that the liquid you drink is designed to line the wall of the small bowel, not be absorbed. Matt had one following his colonoscopy to see how far his inflammation extended as the GI didn't want to push through his TI.

Dusty. xxx
 
Just seen the nurse practioner. They are aiming to give me the first infusion today, and if it goes OK, I can get home tomorrow. WooHoo! :)
 
Yee Haw!!!

I hope all goes well hun...there ain't no place like home...
casa.gif




Dusty. :heart:
 
Here's to hoping your infusion went well and you get home today. At least the windy weather has died down a bit for your flight!
 
Thanks all xxx The infusion went well and I'm all set for the 2 p.m flight. A touch of nausea today, but nothing major. Dr Potty(?) has been fairly conspicuous by his absence. I've seen him once in the 10 days I've been here. Even the surgeon and his entourage were barely suppressing sniggers when I said he hadn't been.
They've been great though, and I'm now being looked after re: the infusions by the only IBD nurse for the Highlands and Islands and he's lovely.
Will have to come to Inverness as there's no infusion centre nearer home but that's OK.
I will never, ever let anyone knock the NHS again.
 
Glad it went well Helen:) Will you have to fly there? Sorry, geographical novice! I'm still looking for the Inner Hebrides!
 
Fab news Helen! :banana::banana::banana:

Have a safe flight hun, everything remains crossed that Remicade is your miracle!

Lots a love, :hug:
Dusty. xxxxxxxx
 
Feeling dizzy and a bit sick

It's been all go since I got back last Friday. Work were fine about me being away for so long. I normally do three days a week, so went in on the Monday and Tuesday to make up some of the time. Got a letter with my next infusion appointment for next Thursday. Geography lesson for Dexky: I have to fly from Benbecula to Stornoway, then on to Inverness. It's only about one and a half hours. But because of the flight times etc, I'll have to go Wednesday afternoon and travel back Friday.
Anyway, last three or four days, the nausea has got worse and I've been feeling pretty dizzy, especially when I get up from bed in the morning. I'm wondering if it might be my blood pressure? They told me it was consistantly a bit low in the hospital and to drink plenty of fluids, which I've been trying to do.
I guess this is not a side effect of the Infliximab because it was low before I had the first infusion, so am wondering if it's maybe because of the steroid taper? I'll mention it to them on Thursday anyway.
 
Helen, I think you will need to draw a picture for Dex...:ybiggrin:

It may well be your blood pressure hun. Dizziness and nausea are signs of a low BP and you most likely have a postural drop when you get out of bed in the morning making it worse.

Dehydration can certainly cause it but have you had your B12 and Folate tested lately? Depleted levels of these are also a cause.

Definitely have them suss it out on Thursday.

Just a tip...when you get up in the morning, sit on the edge of the bed for a couple minutes and then when you stand up wait another 30 seconds or so before moving away. Doing this allows your BP to adjust to the change in position plus not moving away from the bed straight away reduces the risk of you falling should you suddenly feel very dizzy or faint, you can just sit back down again. It goes without saying that that it's best not to leave going to the toilet till the last second! :lol:

Dusty. xxx
 
Here's a picture for you Dusty :kissgrits:

Helen, I hope you get the dizziness and nausea sorted. Assuming Remi works for you, will you have to make that trip for each infusion? I guess it's a good excuse for a mainland shopping spree but geez it seems a lot of traveling!! All well worth it if it works though:)
 
Thanks Dusty. I haven't had my B12 or Folate tested ever, unless it's something they do as part of the FBC? I'll talk to the IBD nurse about that too when I see him.
Yes, Dexky, it's Inverness each time because there isn't an infusion centre nearer home. But like you say, if it's going to work, then it is well worth the trips.
 
And Helen comes out with fists held high and ready for the fight! :lol:

Good luck hun. I hope all goes well and is boringly uneventful!...:goodluck:

Have a safe trip, :hug:
Dusty. xxxxxxxx
 
How are you feeling Helen? So many speak of Remi like it's been their miracle! Hope it's yours! Travel safely:)
 
Hey there. Been a bit rough this week, but I think that's the Pred taper. Other than that, I think things are happening. Stuff seems to be moving through my gut more easily and............ well, I don't want to be gross.
But I'm gonna be!! I am now farting out of my bottom again :ylol: It feels so good and I am so pleased with myself, that I just let rip whenever and wherever. Sorry, Dexky, you did ask!! :redface:
 
Second infusion done :) Most eventful part was that there was an inmate from the local prison there too, with two guards, one of whom he had to be cuffed and chained to the whole time! Asked the IBD nurse if cuffs were optional and he said I'd get them too if I was naughty!
He reckons too that the dizziness etc is the Pred taper: BP was pretty good for me during infusion. And he took bloods for B12 tests, tho he reckons deficiency is more likely in people who've had ileal surgery.
 
Last edited:
So you never did say whether you got cuffed or not Helen. :ylol:

Good to hear all has gone well Helen and you had some distraction too boot!

Just my two cents worth (so unusual for me!)...I don't disagree with the guy but I don't see any reason why chronic inflammtion/scarring can't produce the same b12 deficiencies as surgery does.

Dusty. xxx
 
I'm sure Dusty could lend you her pink furry cuffs!
And I agree, chronic/acute inflammation of the terminal ileum could easily prevent B12 absorption. I don't absorb iron when flaring and I have not yet had surgery.
 
To quote James Brown........

I feel good :soledance:
That's me home, and I just feel really, really good. I'm a little tired, and a little achy, but I just feel so well :ybiggrin: It's been so long since I've had normal in the bladder, and to a lesser extent BM department, that I think I developed a new normal, but things seem to be going back to what they should be.
 
Thats brilliant news! The joys of infliximab.

It has just taken me 15 mins to write his as I have TWO very nosy kittens insisting on walking on me and the keyboard....
 
No news is good news!

Not updated for a while cos, since my last infusion, I have been doing really well. Down to 5 mg of Pred and no major return of symptoms. Wool! Wool! Off for next infusion on Wednesday. Raigmore is a teaching hospital and a doc doing research asked if they could follow my case for a year. So this time I have to food fast for 6 hours before appt and give blood and urine samples.
It's nice to be able to give even just a little bit back :)
 
Grumbletum said:
Not updated for a while cos, since my last infusion, I have been doing really well. Down to 5 mg of Pred and no major return of symptoms. Wool! Wool! Off for next infusion on Wednesday. Raigmore is a teaching hospital and a doc doing research asked if they could follow my case for a year. So this time I have to food fast for 6 hours before appt and give blood and urine samples.
It's nice to be able to give even just a little bit back :)
Click to expand...

That's good news Helen and good for you! :)
 
All well with No 3. My B12 level is normal too and the dizzy spells stopped a couple of weeks back. Getting to be a chunky little Grumbly tho, so they've advised me to up the Aza to 125mg.
Next appt will be another scope:poo: to see what's what and decide whether to keep on with the Remi or not.
 
How do you feel about possibly stopping Remi?? The prospect of never being able to take it again seems a little daunting, especially if you have a history of fisulae. I'm sure you've considered this, so just curious:)
 
Thanks for the update Helen! :)

Fab to hear that all is going well! :panda::panda::panda:

I'm curious too as to why they want to stop something that is obviously working well.

Dusty. xxx
 
I had a chat with the IBD nurse about it. He did say that they were disinclined to use Remi sporadically, but also have to weigh up the cons of what being on it exposes you too. I do worry about getting fistulas again. I think it would be too early to stop. Last week, I was starting to get fatigued again, but the day after the infusion I felt brilliant.
 
Ah, the pros and cons! Good luck with the decision making Helen! Like Dusty always says...the devil and the deep blue sea!!
 
Hmmm, no offence Helen...:wink:...but in view of your age, thinking of serious side effects here, I think I would be inclined to stick with what is working, if it ain't broke don't fix it!

Good luck hun and let us know what you decide.

Dusty. xxx
 
MY AGE??! How dare you!!
Lol, only kidding. The way I feel is that it took so long to get diagnosed and it's been a bit of a battle to get the inflammation under control. Seeing it on the colonoscopy screen really hit home. I want my Remi fixes!
Not sure if I'll be given a choice, but I'm not too proud to beg!
 
A bit scared

So, about three weeks since Round 3? Also coincided with losing the Pred which I am very happy about, after 6 months of it, but also a little wary as it feels a bit like walking the tightrope without the net.
Tummy, bladder wise good at first. A couple of weeks after the infusion, a fair bit of joint pain, especially in hips and knees. And an acne like rash on my chest.
But last night I almost called NHS24 ( like 911 for those non UK. ) Crippling stomach pains, so I'm trying to figure is it:
A) Crohn's related
B) Meds related
C) Food related ( had seafood for lunch )
I managed to drift off to sleep at 4am and was recovered enough to go to work today. Keeping an eye on things.
I had a GI appointment for the end of this month, but it was rescheduled for mid December due to unforeseen circumstances. It's a bit confusing: I see the GI who comes here, but I'm also a patient of the GI on the mainland who prescribed the Infliximab.
 

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