Crohn's Disease

batgoat

Northern Monkey wrote: »

Anyone else been diagnosed with osteoporosis? Got a bit of a shock today when I opened a referral letter for it following a dexa scan a couple of weeks ago.

More cr4p to deal with!

I got diagnosed with osteopenia so taking calcium tablets for it which is supposed to bring it back to normal. It's the stage before osteoporosis, hopefully it's returned to normal by now. Extended time on steroids can bring it about unfortunately.

The_Conductor

Yep- the steroids leaches calcium from your bones- I've been on steroids for protracted periods of time for over 20 years at this stage. I'm a lot happier off them- but am taking calcichew D3 and Vitamin K supplements to try and combat osteoporosis (to say nothing of arthritis- which is also rife with Crohns).

Gael23

The_Conductor wrote: »

Yep- the steroids leaches calcium from your bones- I've been on steroids for protracted periods of time for over 20 years at this stage. I'm a lot happier off them- but am taking calcichew D3 and Vitamin K supplements to try and combat osteoporosis (to say nothing of arthritis- which is also rife with Crohns).

What are you taking for your chrons?

batgoat

The_Conductor wrote: »

Yep- the steroids leaches calcium from your bones- I've been on steroids for protracted periods of time for over 20 years at this stage. I'm a lot happier off them- but am taking calcichew D3 and Vitamin K supplements to try and combat osteoporosis (to say nothing of arthritis- which is also rife with Crohns).

Sister has rheumatoid arthritis which makes me wonder about if there's a genetic predisposition in families to such inflammatory conditions. My current primary crohns related issue is that I seem to always be tired. It's like we get a nice selection of the various conditions, chronic fatigue syndrome followed by some arthritis later on in life.

Know people have it way worse with illnesses but I find it incredibly difficult to explain to family members why it's messed with me so much in the past year.

Back in for a colonoscopy in two weeks. On remicade and imuran but don't concerned that it's still active. So absolutely terrified that doctor will want to pursue surgery....

The_Conductor

Gael23 wrote: »

What are you taking for your chrons?

Stellara and Imuran (and painkillers as required)

Gael23

The_Conductor wrote: »

Stellara and Imuran (and painkillers as required)

Stelara is next for me if Humira doesn’t work, and I’m not sure it is working

essgee268

The_Conductor wrote: »

Stellara and Imuran (and painkillers as required)

took a while for it to start with me and I haven't looked back for over 3 years its a godsend

Gael23

essgee268 wrote: »

took a while for it to start with me and I haven't looked back for over 3 years its a godsend

Stelara or Imuran?
Looks like Humira is failing me.

essgee268

Gael23 wrote: »

Stelara or Imuran?
Looks like Humira is failing me.

Humira. sorry to hear. how long since you started

Gael23

essgee268 wrote: »

Humira. sorry to hear. how long since you started

Nearly 3 months.
It’s helping my bowel but it doesn’t appear to be working for my psoriasis

patnor1011

Humira actually gave me psoriasis. I started losing hair in round patches about 4 spots on my head. Size of a 2 euro coin. Dry scabby skin, and even bigger size on both of my knees.
All cleared few weeks after my consultant put me off Humira.

Soulsun

The_Conductor wrote: »

Just be careful with the Tramadol- it can cause constipation.
It is beyond ridiculous that basic care for Crohn's and UC- does not include pain management. If Crohn's and UC were more common- there would be decent advocacy groups out there demanding basic care and rights for us- sadly- we're so shattered by our experiences of the disease, to make our voices heard ourselves.

Tell your GP about the Tramadol and how it worked for you- and request an rX from him/her. I'd be very surprised if they didn't give it to you. There is a 100Mg slow release version that is probably the better of the two (the 50mg fast release ones aren't great, they work faster- but you're limited in how many you can take- whereas the 100Mg ones last 12 hours.

Talk to your GP though- they need to be made aware of the pain you're in- and they are the gatekeepers for services such as pain relief clinics etc.

First time poster here but have family with crohns.
Agreed on the lack of pain mgt.

Just on the tramadol these are quite powerful tablets so be extra careful and are highly addictive.

JimSmash

Hi all,

My best friend was told today that he needed ileocaecal resection and his appendix removed. The surgeon believes that, as the strictures are as they are, using medication won't help his symptoms. He is 34 and was only diagnosed last year with Crohn's.

Has anyone on this forum any experience with this operation? What are the chances that he will need a stoma bag permanently after the operation? Is there any point in trying stricture removal or steroids beforehand?

Thank you very much for any advice you may have.

Jim

The_Conductor

Jim-

Its impossible for any of us to tell.
I've had surgery 9 times- and have had more sections than I care to remember (including having my appendix, gallbladder and lots others removed). Yet, I'm still without an illeostomy / stoma bag. I could also point at a long and varied list of people who only had surgery once- and have a bag.

Its not possible to tell- it depends- and it may not be obvious to the surgeon until he/she is actually operating on your friend.

Best of good luck to them.

Gael23

Anyone here taking or has taken Humira?
So before I got Chrons I was on a different biologic as I have plaque Psoriasis as well. One of the key things I was told was never to take your injection when on an antibiotic.

When I got Chrons I switched to Humira and followed the same advice. Got a nasty sinus infection and duly stopped but my Gastroenterologist told me yesterday I should not have done that as it puts me at risk of a flare.
So I’m just not sure who to believe.

BobMc

batgoat wrote: »

Sister has rheumatoid arthritis which makes me wonder about if there's a genetic predisposition in families to such inflammatory conditions. My current primary crohns related issue is that I seem to always be tired. It's like we get a nice selection of the various conditions, chronic fatigue syndrome followed by some arthritis later on in life.

Know people have it way worse with illnesses but I find it incredibly difficult to explain to family members why it's messed with me so much in the past year.

Back in for a colonoscopy in two weeks. On remicade and imuran but don't concerned that it's still active. So absolutely terrified that doctor will want to pursue surgery....

They are all closely related auto immune disoders, so I also believe there are some genetic factors involved

The_Conductor

Sorry that I haven't posted in a while- had numerous ups and downs- to say nothing of the most bizarre bloods that the hospital has ever seen.

Anyhow- if anyone is in Portugal- you might have an opportunity to visit the Knowledge Pavillion on the Promenade Atlantico behind the Vasco da Gama centro. It has a very good exhibition on Crohn's and Ulcerative Colitis- and excellent displays that really have to be seen to be believed.

There is an excellent article in Timeout Lisboa which gives a really good introduction to the exhibition here Note: the article is in Portuguese- but it is quite easy to follow.

If you have the opportunity to visit this exhibition- I'd strongly encourage you to do so- and its great that they are educating children on conditions like Crohns and UC.

Exhibition has a EUR6 entrance fee- and is running until August 2020. Its on the ground floor of the exhibition hall- and will be on the school agenda and tours of over 180,000 school children in Portugal- along with random tourists and other interested parties- such as many of us here.

EnderWigign

Hi All,

I am not sure if anybody can help me out with this query. I have been prescribed Humira and I have been taking it since January. Previously I was taking Infliximab. I take a Humira pen every two weeks and get my prescription fulfilled every four weeks. As the prescription is every four weeks eventually I needed two prescriptions in one month. That happened in Novemeber. I assumed that I wouldn't have to pay for the second prescription as I had already paid €124 for November. Although I queried it with the pharmacist I ended up paying them a second €124 for the Humira prescription in November. They made some vague comments about hi-tech medicines. I argued a little but needed my prescription. I have searched everywhere and I can't find anything that would indicate that I have to pay a second €124 in a month. Due to the cost of Humira it wouldn't necessarily surprise me if I do have to pay a second fee but I can't find anything that shows I do have to pay that. I'd be gratefule if anybody has any information on this one way or another.

The_Conductor

Sounds like the pharmacist put it through for the following month.
For high tech prescriptions (such as Humira, Stellara etc) they *are* covered in your EUR124 a month- and if you're on 4 monthly injections- as happened for you in November- you *do* occasionally hit a month where you need two.
The HSE reimbursement allows a reorder frequency of 21 days on Humira or Stellara- for patients on the 4 weekly doses- the pharmacist can put your details onto the reimbursement website- and once the 21 days has elapsed- even if you're on 4 weekly- they can claim the cost of the additional dose from the HSE.

You are owed 124 by the pharmacy- you are not expected to pay more than 124 in any calendar month for licensed prescription medication.

EnderWigign

The_Conductor wrote: »

Sounds like the pharmacist put it through for the following month.
For high tech prescriptions (such as Humira, Stellara etc) they *are* covered in your EUR124 a month- and if you're on 4 monthly injections- as happened for you in November- you *do* occasionally hit a month where you need two.
The HSE reimbursement allows a reorder frequency of 21 days on Humira or Stellara- for patients on the 4 weekly doses- the pharmacist can put your details onto the reimbursement website- and once the 21 days has elapsed- even if you're on 4 weekly- they can claim the cost of the additional dose from the HSE.

You are owed 124 by the pharmacy- you are not expected to pay more than 124 in any calendar month for licensed prescription medication.

Thanks The_Conductor. I have to pick up my next prescription on Friday so will discuss it with them at that stage.

OUTDOORLASS

Hi All, Hope everybody is doing ok. After listening to Leo.s speech at 9 pm this evening, I must say I.m a bit anxious....
Most of us are immuno compromised... My consultant has recently retired, but has anybody had any contact with any of their
healthcare people.... I.m doing what the HSE say, hand washing, social space etc....

What do ye think guys...??

Gael23

At the moment I’m more anxious about outpatient appointments being cancelled and ending up in hospital because I have no Humira

0lddog

Gael23 wrote: »

At the moment I’m more anxious about outpatient appointments being cancelled and ending up in hospital because I have no Humira

Do you have a specialist nurse for your issue at your hospital ? ( I do - for RA )

If so, interact with them and make clear at what stage your prescription will expire ( I have email access, I know some hospitals just have telephone support )

I find the support nurse system to be very good.

Gael23

0lddog wrote: »

Do you have a specialist nurse for your issue at your hospital ? ( I do - for RA )

If so, interact with them and make clear at what stage your prescription will expire ( I have email access, I know some hospitals just have telephone support )

I find the support nurse system to be very good.

I have enough until potentially the beginning of May if I stretch out the doses a few days each which I don’t think will be a problem

echo beach

Gael23 wrote: »

I have enough until potentially the beginning of May if I stretch out the doses a few days each which I don’t think will be a problem

Don’t adjust your dosing without medical advice. If out patient appointments are cancelled alternative arrangements will be put in place to issue new prescriptions.

BrianJD

Hi. Is everyone cocooning and of so, when do you think we can stop?

The_Conductor

BrianJD wrote: »

Hi. Is everyone cocooning and of so, when do you think we can stop?

You need to keep in touch with your IBD team- who will better advise.

In general- having Crohn's does not mean you have to cocoon- it would however be determined by your medication regime- especially if you are on treatments which compromise your immune system.

This is best explained on the Canadian IBD website here:

https://crohnsandcolitis.ca/About-Crohn-s-Colitis/COVID-19-and-IBD/Guidance/Expert-Recommendations/Are-you-at-Risk

Keep safe!

Turtwig

The HSE guidance issued to practitioners

Relevant quotes:

You are not at increased risk of developing COVID-19 because you have IBD (Crohn’s disease or ulcerative colitis).

You should follow all the HSE advice on cough etiquette, social distancing, and hand hygiene.

You should continue to take all your regular medicines for IBD unless your doctor advises otherwise.

If you take any of the following medicines, you should cocoon yourself (stay at home) because these medicines lower your immune system and may make it harder to fight COVID-19.

List of medicines:

Ustekinumab (Stelara)
Vedolizumab (Entyvio)
Methotrexate
Infliximab (Remicade, Inflectra, Remsima)
Adalimumab (Humira, Amgevita, Hulio, Imraldi)
Golimumab (Simponi)
Azathioprine (Imuran)
Mercaptopurine (Purinethol)
Tacrolimus (Prograf)
Ciclosporin (Sandimmune, Neoral)
Tofacitinib (Xeljanz)
Clinical trial medications
Prednisolone (Deltacortril) at a daily dose of 20mgs or greater

If you are an essential worker and are taking one of these medicines, you should discuss with your occupational health department before working.

Gael23

No I’m not cocooning. Working from home for the foreseeable future but that’s about all

Hard to do when your feeling well

The_Conductor

Gael23 wrote: »

No I’m not cocooning. Working from home for the foreseeable future but that’s about all

Hard to do when your feeling well

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.