Crohn's Disease

Gael23 · 15-05-2020 12:01pm

The_Conductor wrote: »

Ditto- working from home here too. Feeling like crap here though- lots of pain and bleeding- and haemoglobin below 8 (not sure how low)- and having difficulty even getting blood tests done with the closure of the private hospitals.

Your GP will do bloods The_Conductor. If you feel that bad ring and they will see you if required

PmMeUrDogs · 15-05-2020 12:27pm

Gael23 wrote: »

Your GP will do bloods The_Conductor. If you feel that bad ring and they will see you if required

Depends on the GP unfortunately! I need some done and I also am 99% sure I have an infection in a fistula wound. My GP prescribed antibiotics over the phone as he is refusing absolutely all in-person appointments, I have to wait for bloods unfortunately!

Clockwork Owl · 18-05-2020 9:04am

I've been cocooning since March 13th, but I reckon I'll be able to do my own shopping and what-not within the next few weeks. I was lucky to have amazing support but it will be nice to get some flexibility and independence back!

patnor1011 · 18-05-2020 7:14pm

I have not being cocooning despite that I am the definition of vulnerable. I could not do it as 350 a week could not cut it for me. I am renting with 2 teenagers and we would be on the street quite fast.
Same goes for my wife. Apparently we are essential workers and we had to keep working. Not to mention that being out of work would severely jeopardize our plan to buy house next year. Life is tough.

Gael23 · 17-06-2020 12:53pm

What are you all doing about going back to work? My office is opening in a few weeks but I have the option to work remotely for the rest of this year.

The_Conductor · 17-06-2020 1:50pm

Gael23 wrote: »

What are you all doing about going back to work? My office is opening in a few weeks but I have the lpeuon to work remotely for the rest of this year.

Home working (for now) no idea of how/when this is going to change. No communication from the office on if/when we are due to return. Its a bit of a movable feast. Not looking forward to going back- my last white cell count was through the floor........

Finelli · 19-06-2020 4:22pm

Gael23 wrote: »

What are you all doing about going back to work? My office is opening in a few weeks but I have the option to work remotely for the rest of this year.

My office is going to start letting people back in at the end of August- everyone has been working from home since mid March. My hope is to be one of the last ones back - maybe in December or early 2021

The_Conductor · 30-09-2020 8:03am

BBC 1 Wales - Oct. 15th @ 9pm

Its a documentary of the personal journey of one of the amazing dancers who is on BBC's strictly come dancing show. She was interviewed on the breakfast programme about her documentary and how Crohn's has affected her, this morning.

Well worth putting it in your diary.

woodzie · 15-10-2020 6:53pm

Hi all, just wondering do any of you get very bloated often. I’m bloated on an almost daily basis and I get a sharp pain in my upper left abdomen around where my stomach is. I spoke to my gastroenterologist about it when I had my recent phone consultation and they said bloating was common and the sharp pain might just be from bloating. I’m worried if the sharp pain I get when bloated is something serious. Do any of you get this?

Northern Monkey · 15-10-2020 7:18pm

woodzie wrote: »

Hi all, just wondering do any of you get very bloated often. I’m bloated on an almost daily basis and I get a sharp pain in my upper left abdomen around where my stomach is. I spoke to my gastroenterologist about it when I had my recent phone consultation and they said bloating was common and the sharp pain might just be from bloating. I’m worried if the sharp pain I get when bloated is something serious. Do any of you get this?

Pre biologicals this would have been a daily occurrence for me but thankfully it’s been much rarer since being put on them.

patnor1011 · 15-10-2020 8:54pm

It was a dull pain right where the rib cage ends. It was persistent yet sometimes stopped when I pressed that area or shifted position for a while. Then it went down say where your hip is. Always left side.

Gael23 · 10-11-2020 9:51pm

I’ve been suffering with constipation the last few weeks, is this a thing with Crohns?
I have a pain in my right side that led to an A&E trip last time it happened so I’m a bit nervous

saneman · 11-11-2020 12:48am

Gael23 wrote: »

I’ve been suffering with constipation the last few weeks, is this a thing with Crohns?
I have a pain in my right side that led to an A&E trip last time it happened so I’m a bit nervous

I can completely understand the nerves, but the only answer I can give is that it can be. If the constipation is associated with abdominal pain then you should get it assessed. The constipation itself could be causing the pain but inflammation in the bowel can also cause pain and slowdown food transit. Other factors that cause constipation are diet changes, lack of exercise (given the lockdown we're all more sedentary), low fluid intake, or some meds. I would still be contacting my doctor/outpatient clinic were I in similar circumstances.

Gael23 · 27-11-2020 11:26am

Started to feel nauseous since but luckily I had an appointment with my consultant this Monday. He examined me and said o was a bit blocked up and put me on Lactulose

The_Conductor · 27-11-2020 11:41am

Gael23 wrote: »

Started to feel nauseous since but luckily I had an appointment with my consultant this Monday. He examined me and said o was a bit blocked up and put me on Lactulose

Good luck on it- I've a 1 litre bottle of it in front of me right now.
Its a bit of a delicate balancing act- how to take enough to get things moving again- without taking too much to the extent that you're back living in the bathroom for a few days.

I think light low residue foods (such as risotto) probably helps at times like these.

Take care of yourself.

Gael23 · 27-11-2020 11:46am

The_Conductor wrote: »

Good luck on it- I've a 1 litre bottle of it in front of me right now.
Its a bit of a delicate balancing act- how to take enough to get things moving again- without taking too much to the extent that you're back living in the bathroom for a few days.

I think light low residue foods (such as risotto) probably helps at times like these.

Take care of yourself.

The good thing with it is you can adjust the dose so easily. If it’s getting too runny you just take less or stop for a while

The_Conductor · 27-11-2020 12:51pm

Gael23 wrote: »

The good thing with it is you can adjust the dose so easily. If it’s getting too runny you just take less or stop for a while

There is a bit of a time lag though- you only see the effects of too much or too little- hours later- by which time you may have taken a second dose and end up with too much........ I guess we're all different though- what works for one person, doesn't necessarily work for someone else.

PmMeUrDogs · 29-11-2020 8:41pm

Has anyone got any experience of having an advancement flap? I know fistulae aren't strictly crohn's related but are common for Crohn's patients.

Due to have one in a few weeks and I've been told the recovery is brutal and i have to lay flat on my back and try to avoid even urinating for two weeks minimum. Is it really that bad?!

essgee268 · 13-03-2021 7:08pm

Has anyone had their vaccination yet. Mine is due next Tuesday. im on Humira and Imuran

The_Conductor · 13-03-2021 7:31pm

I'm on Stelara and Imuran- and haven't heard a peep from anyone.
My bloods are pretty awful- haemoglobin was as low as 6.1 in the last few weeks, but has recovered to 8.5 after iron infusions- and my white cell count is 2.1
My GP says that I may fall between the cracks- because I normally see my consultant privately (so I'm not in the public system).
He also says I need an mRNA vaccine- as my immune system is too compromised to react properly to a regular vaccine.
Not very happy.........

Gael23 · 13-03-2021 8:15pm

I thought we were group 7

The_Conductor · 13-03-2021 9:10pm

Gael23 wrote: »

I thought we were group 7

Depending on the condition we're in- including the medication we're on- we could reasonably be included in Group 4 (which they estimate may total over 200,000 people).

The issue is that its the acute hospitals who are supposed to be identifying us- and if we have not been actively engaging with the acute hospitals (for whatever reason- including accessing private healthcare)- we don't feature on *any* lists- group 4, group 7 or otherwise.

We fall through the cracks.

Gael23 · 13-03-2021 9:14pm

The_Conductor wrote: »

Depending on the condition we're in- including the medication we're on- we could reasonably be included in Group 4 (which they estimate may total over 200,000 people).

The issue is that its the acute hospitals who are supposed to be identifying us- and if we have not been actively engaging with the acute hospitals (for whatever reason- including accessing private healthcare)- we don't feature on *any* lists- group 4, group 7 or otherwise.

We fall through the cracks.

Would being on High Tech prescriptions identify us? I’m private too but I’m seeing my gastroenterologist in April so will discuss it then

The_Conductor · 13-03-2021 9:18pm

Gael23 wrote: »

Would being on High Tech prescriptions identify us? I’m private too but I’m seeing my gastroenterologist in April so will discuss it then

It *could* be used- however, the high-tech prescriptions are not administered from the acute hospitals (its a different branch of the HSE altogether). We are supposed to be specifically identified by the acute hospitals.

So- I'd fully support your hypothesis that it would be an excellent way to identify us (they even have our PPSNs for the high-tech scheme)- however, whether they will do it, and they don't have a good track record on recognising the bleeding obvious, is entirely another thing.

It would obviously include all of us, all the type 1 diabetics and so many other immunocompromised people- will someone put the jigsaw together though- and see the commonality that is staring them in the face- I suspect not. I don't mean to burst any bubble- I simply don't believe they will think outside of the box, at all.

13-03-2021 9:45pm

I'm assuming not currently being on meds basically means you don't get special priority? Was taken off infliximab at end of last year due to antibody build up and still going okay without so just need to get normal tests intermittently atm.

The_Conductor · 14-03-2021 11:10am

Deleted User wrote: »

I'm assuming not currently being on meds basically means you don't get special priority? Was taken off infliximab at end of last year due to antibody build up and still going okay without so just need to get normal tests intermittently atm.

Mike- honestly, I don't think it makes much of a difference (if any).
Looking at how they have nixed the AZ vaccines this morning in Ireland- regardless of any high priority lists- we're going nowhere anytime soon.........

Vis-a-vis those of us who were seeing consultants privately- we need to start hassling them to try and get ourselves on lists- because it looks like we're certainly not going to be put on any lists unless we do.

14-03-2021 11:31am

The_Conductor wrote: »

Mike- honestly, I don't think it makes much of a difference (if any).
Looking at how they have nixed the AZ vaccines this morning in Ireland- regardless of any high priority lists- we're going nowhere anytime soon.........

Vis-a-vis those of us who were seeing consultants privately- we need to start hassling them to try and get ourselves on lists- because it looks like we're certainly not going to be put on any lists unless we do.

Yep, crohn's doesn't seem to be in itself aggravating for the virus. So that's something I get. I suspect the AZ vaccine could turn out to be unrelated to clotting.

Hadn't realised about private consultants which is bleak... Really extraordinary that we have no centralised patient database or anything.

jellybear · 14-03-2021 11:40am

I'm on immunosuppressents, not Chron's related, and was told by my GP that I would be part of the list they are compiling.
I'm assuming this is because I get my bloods done there, so perhaps get in touch with your GP to see if they will be referring you for the vaccine.
ETA- I attend a private consultant for my condition.

The_Conductor · 14-03-2021 2:35pm

jellybear wrote: »

I'm on immunosuppressents, not Chron's related, and was told by my GP that I would be part of the list they are compiling.
I'm assuming this is because I get my bloods done there, so perhaps get in touch with your GP to see if they will be referring you for the vaccine.
ETA- I attend a private consultant for my condition.

My GP told me that the Group 4 (highly vulnerable patients under the age of 65) is being organised solely through the acute hospitals- and GPs have no manner of nominating a patient for the list, though I should be on it.

We're really being forgotten about.

Gael23 · 14-03-2021 4:07pm

The_Conductor wrote: »

My GP told me that the Group 4 (highly vulnerable patients under the age of 65) is being organised solely through the acute hospitals- and GPs have no manner of nominating a patient for the list, though I should be on it.

We're really being forgotten about.

I’d try and contact your gastroenterologist, it’s all you can do.

Do you know how they distinguish between groups 4 and 7?

Crohn's Disease

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