Crohn's Disease

BobMc

My son is getting 2nd Pfizer shot this Wednesday. Paeds consultant organised it. He's nearly 17 due to covid we've not been moved to adult consultant yet

The_Conductor

Gael23 wrote: »

I got a phone call from Vincent’s yesterday from someone doing up lists asking do I still need a vaccine

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Gael23

The_Conductor wrote: »

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Citywest wouldn’t suit me, I’m on the total opposite side of Dublin so I’m glad I got it from my GP.
Do you live out that side?

The_Conductor

Gael23 wrote: »

Citywest wouldn’t suit me, I’m on the total opposite side of Dublin so I’m glad I got it from my GP.
Do you live out that side?

Lucan- so its not a million miles away- and my GP is apparently still on the over 70s...........

Honestly- if they'd told me I had to drive to Galway- I'd happily hop in the car, with a smile on my face- and the miles would flash before my eyes.

Getting a vaccination is really like Christmas for me!

BobbyMalone

The_Conductor wrote: »

Ditto. Got a follow up text on Saturday afternoon with a date/time for Citywest. Its a Covax Moderna vaccination I'm down for. What a relief. St. Vincents said they assumed I had received it- but were calling all Group 4s and Group 7s to make sure. Phew. I'm like a giddy kid on Christmas morning waiting for my vaccination.

Do you know whether this is based on severity of disease or the amount of medication you are taking (or both)? I ask because I have not heard anything from Vincent's, despite trying to make contact about whether I might be able to get an early vaccine.

Gael23

BobbyMalone wrote: »

Do you know whether this is based on severity of disease or the amount of medication you are taking (or both)? I ask because I have not heard anything from Vincent's, despite trying to make contact about whether I might be able to get an early vaccine.

What medication are you on?

I'm not sure if anywhere is consistent on what grounds consultants or gps are selecting tbh. Eg I'm not currently medicated but I've been on immunosuppressants, infliximab fairly recently so I'm assuming that the risk of me going back on something was enough to consider me high risk. But then heard of plenty that have heard pretty much nothing in spite of being on biologics etc.

BobbyMalone

Gael23 wrote: »

What medication are you on?

Azathioprine, 50mg/day.

Deleted User wrote: »

I'm not sure if anywhere is consistent on what grounds consultants or gps are selecting tbh. Eg I'm not currently medicated but I've been on immunosuppressants, infliximab fairly recently so I'm assuming that the risk of me going back on something was enough to consider me high risk. But then heard of plenty that have heard pretty much nothing in spite of being on biologics etc.

It's quite frustrating, and doesn't make any sense: if the risk of you going back on something is enough to get an early jab, surely actually being on something would result in the same?

BobbyMalone

BobbyMalone wrote: »

Azathioprine, 50mg/day.





It's quite frustrating, and doesn't make any sense: if the risk of you going back on something is enough to get an early jab, surely actually being on something would result in the same?

Yep, it's incredibly inconsistent unfortunately and there really should not be a luck of the draw element to this. I'm not really sure how it's working atm but it might be worth contacting your gp or consultant about it.

Gael23

Yes you should be in group 7 on Aza

The_Conductor

Deleted User wrote: »

Yep, it's incredibly inconsistent unfortunately and there really should not be a luck of the draw element to this. I'm not really sure how it's working atm but it might be worth contacting your gp or consultant about it.

GPs are (allegedly) putting together Group 7 lists (subject to their preceding groups being completed, which isn't necessarily the case).

@BobbyMalone - if you haven't heard anything from your GP (thus far)- how about ringing your consultant and asking whether they will add you to their list?

The list SVUH and SVPH were using- was the hi-tech list (so I was told)- and they went through all the recipients of high tech prescriptions in the previous 12 months to check their status. Nonetheless- azathioprine does classify you as group 7, even if its not on the hi-tech list- so I'd still suggest you should contact your consultant and try to see what is happening.

BobbyMalone

The_Conductor wrote: »

GPs are (allegedly) putting together Group 7 lists (subject to their preceding groups being completed, which isn't necessarily the case).

@BobbyMalone - if you haven't heard anything from your GP (thus far)- how about ringing your consultant and asking whether they will add you to their list?

The list SVUH and SVPH were using- was the hi-tech list (so I was told)- and they went through all the recipients of high tech prescriptions in the previous 12 months to check their status. Nonetheless- azathioprine does classify you as group 7, even if its not on the hi-tech list- so I'd still suggest you should contact your consultant and try to see what is happening.

Thanks for that - I never heard of the hi-tech list, but I think that's a good idea to contact my consultant directly. I had been trying the nurses in SVUH but maybe a more direct approach would work.

The_Conductor

If you're in SVUH- ring the IBD nurse, they're probably the easiest people to contact- and ask if they'll add you to the St. Vincent's list.

frosty123

Does C D basically mean going to do a number 2 is extremely uncomfortable?

The_Conductor

frosty123 wrote: »

Does C D basically mean going to do a number 2 is extremely uncomfortable?

Lots of us with Crohn's have painful bowel motions- however, there are a list of things longer than my arm that could cause difficulty or uncomfortable toilet issues, it is not a good idea to assume that its Crohn's (or anything in particular). If symptoms persist- let your GP know, and have it investigated properly. Using Boards, or Google- to try and find a diagnosis for your symptoms is a very bad idea. You only get the very worse case scenarios, alongside absolute miracles, on the internet- you do not hear what happens with 90% of people.

If it persists- talk to your GP and get it checked out- but don't make any assumptions/presumptions.

frosty123

Nothing wrong with my bowel movements..I was just curious, hence the question

Gael23

frosty123 wrote: »

Nothing wrong with my bowel movements..I was just curious, hence the question

My main symptom was extreme fatigue. In July 2018 I fell asleep at work and the resulting trip to A&E got me finally diagnosed after 4 years of symptoms

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

Ravage1616

Deleted User wrote: »

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

Literally in the same boat as your self. Except i have had surgery and have a permanent stoma now but surgery was 4 years ago and Crohns has been complete controlled in that time by entyvio. So hoping it will be ok!

Another option is to look at Laya Life Insurance. you can get a quote of them without a medical and get cover immediately. But it will be pricey. It's my back up plan if there delays with the broker.

TessC

Deleted User wrote: »

So in the process of getting my mortgage and signing up for mortgage protection. The provider has requested a report from my gp. I've never had surgery, currently medication free and been years since last flare. I did have a reaction to infliximab last year but that's it. Regular bloods and stool tests done, I'm assuming all of the above makes me reasonably safe to get cover but probably a higher premium. Anyone faced similar scenario?

My situation is very similar to yours—no surgery, years since my last flare, though I am on medication. I got mortgage protection insurance late last year. I went through lion.ie but the policy was through Aviva. They did load the premium but not as badly as I expected. I'd guess maybe an extra 10-15 euros a month compared to what someone without my medical history would pay. Don't be surprised if they end up going back to your GP for more information. I worried it was a bad sign when that happened to me, but I think sometimes GPs err on the side of giving as little information as they have to.

That's not so bad so. I've only missed about fifteen days in five years due to illness so I'm pretty hardy. The questionnaire on health is incredibly invasive, I get it but tad uncomfortable at same time.

hankless

Does anyone have any experience or recommendations for a skin specialist? My consultant put me on 'the list' but I have heard nothing back now over 2+ years later.

I have Crohn's, am on 150mg azathioprine (imuran), and my flare-ups are always just blood in stool but I have long-term issues with skin rash and flaky scalp. A GP said I had seborrheic dermatitis but I am yet to see a skin specialist. At this stage I'd just like to see someone instead of waiting further for an appointment.

woodchuck

I've recently been diagnosed with Crohn's disease. When I was diagnosed, the consultant basically just gave me a prescription and sent me on my way. I'm meeting him again next week, but now that I have the diagnosis and had time to do some research, I naturally have a lot of questions.

Is there anything in particular you'd advise asking about or discussing with the consultant? He's a surgical consultant if that makes a difference, but I did meet with a dietitian also.

For example, I've read that ibuprofen can cause a Crohn's flare up. So I'm going to ask him about that and possible alternatives. But ibuprofen is such a commonly used over the counter medicine, that I feel he should've provided me with that information. Instead I've just been floundering along trying to figure things out for myself. Is there anything else I should be aware of that I should bring up at the appointment?

Northern Monkey

Has anyone been offered their booster jab yet? I’m getting mine on Monday, really surprised at how quickly it was offered given we were in group 7 for the initial jab.

The_Conductor

https://www.boards.ie/discussion/comment/118195625#Comment_118195625

Haven't heard anything (at all) yet.

BobMc

Yep, son had his 3rd pfizer last thursday - 2nd dose got 18th May

OUTDOORLASS

Hi All,

Got early Oct.

In middle of relapse first time in about 15 years. Taken off Humira cus of absces. Bloods gone off to see if I.v developed antibodies to

Humira and it might be no longer working.

What are ye using in the line of Bio treatments nowadays ?? I.v only heard of Humira and Infliximab....

Fistulas and other crap happening. Got endoscopy last week, MRI early this week. Waiting to hear what the team plan.

Going to be no quick fix I.d say.

Hope ye are doing ok.

Thanks, ODL

TessC

https://www.boards.ie/discussion/comment/118325169#Comment_118325169

Hi ODL,

I'm sorry to hear about your relapse. I'm aware of two biologics used as alternatives to Humira - Stellara and Simponi. I don't know if either of them are currently a first choice after Humira.

I hope they get you sorted out with a new treatment plan soon.

TessC

Is anyone still waiting on their third dose/booster? I was assured I was on the list but never called. I've ended up arranging my own.

OUTDOORLASS

Thanks TessC. Inpatient at the moment til Christmas Eve. On TPN feed to rest the bowel. Talk of Infliximab being used. Getting IV vit c and b to build me back up.

Hope u get the booster soon. Take care