Crohn's Disease

Gael23 · 08-11-2018 10:32pm

batgoat wrote: »

I sort of try to keep a decent enough memory of what doesn't work for me or try a food diary maybe? It's a pain in the ass to manage, literally unfortunately.

That is really what you need to do. I guess over time you know what’s good and what’s not.

OUTDOORLASS · 09-11-2018 9:59am

I ate a forkful of coleslaw last week, and paid for it for 2 days. Mushrooms also a complete no no for me.

OUTDOORLASS · 09-11-2018 10:14am

Dont know if you got operated on yet, but best wishes to Mr Conductor....hope you improve soon.......XXX

The_Conductor · 09-11-2018 10:55am

OUTDOORLASS wrote: »

Dont know if you got operated on yet, but best wishes to Mr Conductor....hope you improve soon.......XXX

Op was on Wednesday.
Unfortunately- the pain meds were all opioid based- and I've managed to get a complete blockage on top of everything else. The rest of my abdomen is even more painful than the incision site.......... I need a new body

Gael23 · 09-11-2018 12:49pm

What’s next after your done with mesalasine?
I really don’t want to take pred.

n1ck · 09-11-2018 12:51pm

Gael23 wrote: »

What’s next after your done with mesalasine?
I really don’t want to take pred.

I was put onto Azathioprine (Imuran) and I have been great since I've been on it. Been on it for 3 years now and haven't had a flare up. Only issue is the constant warnings I get about wearing suncream while on it.

Gael23 · 09-11-2018 1:03pm

n1ck wrote: »

I was put onto Azathioprine (Imuran) and I have been great since I've been on it. Been on it for 3 years now and haven't had a flare up. Only issue is the constant warnings I get about wearing suncream while on it.

As in you should wear it?

n1ck · 09-11-2018 7:32pm

Gael23 wrote: »

As in you should wear it?

Yes, you're more sensitive to sunlight. Saying that, I only wear it when it's very sunny out.

Gael23 · 06-12-2018 4:57pm

What do you take for pain when you need something a bit stronger than Paracetamol?

The_Conductor · 06-12-2018 5:03pm

Gael23 wrote: »

What do you take for pain when you need something a bit stronger than Paracetamol?

Only thing OTC is Solpadeine- its better than paracetamol- but still not great. Honestly- if paracetamol doesn't cut it (and lets face it- it just doesn't do anything for most of us)- you really should talk to your GP in the first instance about pain management- life is too short to be in constant pain.........

Gael23 · 06-12-2018 9:52pm

The_Conductor wrote: »

Only thing OTC is Solpadeine- its better than paracetamol- but still not great. Honestly- if paracetamol doesn't cut it (and lets face it- it just doesn't do anything for most of us)- you really should talk to your GP in the first instance about pain management- life is too short to be in constant pain.........

I was thinking about Solpadiene alright. Is there enough codiene in there to make you constipated? Had a bad experience with that before.

The_Conductor · 07-12-2018 8:11am

Gael23 wrote: »

I was thinking about Solpadiene alright. Is there enough codiene in there to make you constipated? Had a bad experience with that before.

It depends on the person.
Its 30mg of codeine- which can cause constipation.
Any of the morphine derivatives are the same.
If you're worried at all- you really should talk to your GP in the first instance- perhaps he/she may be in a position to come up with a better idea?

js35 · 07-12-2018 11:48am

The_Conductor wrote: »

It depends on the person.
Its 30mg of codeine- which can cause constipation.
Any of the morphine derivatives are the same.
If you're worried at all- you really should talk to your GP in the first instance- perhaps he/she may be in a position to come up with a better idea?

It’s solpadol (prescription only)that has the 30mg of codeine solpadeine is 8mg afair

Gael23 · 07-12-2018 8:11pm

js35 wrote: »

It’s solpadol (prescription only)that has the 30mg of codeine solpadeine is 8mg afair

I think you are right on that. I took solpadol after surgery ( not chrons related) some years ago and the constipation and drowsiness I suffered made be feel that enduring the pain was a better option.

js35 · 08-12-2018 5:55pm

Gael23 wrote: »

I think you are right on that. I took solpadol after surgery ( not chrons related) some years ago and the constipation and drowsiness I suffered made be feel that enduring the pain was a better option.

Same here

paracetamol i think is the lesser of two evils when I have a flare up

The_Conductor · 08-12-2018 9:28pm

By rights most of here should be referred by our GI teams for pain management.
Its a pretty fundamental level of care- that seems to be omitted with Crohn's- for no good reason.
We have enough crap in our lives- without being in constant pain and trying to figure whether we're up to doing basic things that other people just take for granted.

Gael23 · 23-12-2018 4:44pm

The_Conductor wrote: »

Only thing OTC is Solpadeine- its better than paracetamol- but still not great. Honestly- if paracetamol doesn't cut it (and lets face it- it just doesn't do anything for most of us)- you really should talk to your GP in the first instance about pain management- life is too short to be in constant pain.........

Asked my GP and he did say Solpadiene which sure enough did very little. My mum gave me a half does of Tramadol which finally worked. Shouldn’t do that I know but the other option was sit for hours in Caredoc.

The_Conductor · 23-12-2018 6:11pm

Gael23 wrote: »

Asked my GP and he did say Solpadiene which sure enough did very little. My mum gave me a half does of Tramadol which finally worked. Shouldn’t do that I know but the other option was sit for hours in Caredoc.

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.

Gael23 · 27-12-2018 12:46am

What should you do of you ever find yourself a little constipated, from pain medicines or otherwise!p?

patnor1011 · 29-12-2018 6:09am

Just found this. I only hope that we will have access to try this as soon as possible. I would prefer that to steroids.
https://www.ncbi.nlm.nih.gov/pubmed/21910367

The_Conductor · 29-12-2018 10:49am

patnor1011 wrote: »

Just found this. I only hope that we will have access to try this as soon as possible. I would prefer that to steroids.
https://www.ncbi.nlm.nih.gov/pubmed/21910367

We have actually had a few small trials in Ireland- and also had a number of projects which include the cultivation of cannabis sativa- funded by the Department of Agriculture- under the RSF umbrella.

The results have been ambiguous- some people reported miracle cures, other people reported severe adverse side effects- more reported a need to use a coadjutor alongside the cannabis (notably those who had undergone surgery).

Then you have a cohort- who have had multiple surgeries for Crohn's or UC- whose current problems are more related to post surgical issues (strictures etc) than conventional Crohns'/UC symptoms.

There isn't a one size fits all- however, if there is a weapon in our arsenal that isn't being used- at very least we deserve to be assessed to see whether its pertinent to us.

There are days when I honestly know if I were stopped at a checkpoint- I'd fail any opiates tests they chose to give me- I've been through the morphine derivatives like a periodic chart- to the extent that I was warned recently that I shouldn't show my prescribed meds in public- as they are worth a fortune on the blackmarket.

I don't know if there is a solution, a medication, that will somehow give us some sort of relief from the excruciating pain of Crohns. At very best at the moment- you can sort of dull it a little- but its still there- to say nothing of the other side effects- the extreme lethargy, the toilet accidents, the blockages, the blood loss, the other symptoms that go hand in hand with Crohns- like arthritis and lupus.

The pain is one aspect of living with Crohns- the manner in which it limits us and our interactions with life in general on a daily basis- is quite another issue. I don't think its necessarily good to look at these in isolation of one another- and I also don't think there is a one-size-fits-all approach that could be used for us.

Life can be cruel- and by god, it is very cruel at times for us with Crohns. The manner in which its an invisible condition- is particularly cruel in some respects- as we do not get any cognisance of our limitations from those around us- whereas some people with lesser issues, but issues nonetheless, are fawned over.

Its almost like there is a list of illnesses and disabilities- and Crohn's is more than an illness- but not perceived as a disability by some- so we're falling between two stools- and just expected to get on with it, regardless of whether we're really up to 'getting on with it' or not.

Cannabis oil and the THC family- is a block of pain relief that works in a different way to opiates and many of the traditional pain relief we have doled out to us like smarties. I think everyone with Crohn's deserves to at least be assessed for suitability for THC- as part of an assessment to see what best meets our requirements (cognisant of the fact that we still have to be functional human beings- and many of us have to work and hold positions of responsibility).

The very least we should be doing right now- is fighting to be assessed on an individual basis- to determine our needs- as such- I would argue that anyone with a diagnosis of Crohn's or UC- should as a matter of course, be assessed under the care of a Pain Relief Clinic- and monitored on an ongoing basis as their disease progresses, in conjunction with their consultant and GP.

This fundamental oversight- is crucifying so many of us.

batgoat · 29-12-2018 11:19am

Question for you guys. So ever since my last flare, I struggle to feel like I have energy. Feel wrecked most of the time etc. Started on infliximab and Imuran after last flare and I've seemed to settled for the most part. So is ridiculous levels of tiredness just another part of the illness?

Gael23 · 29-12-2018 11:24am

batgoat wrote: »

Question for you guys. So ever since my last flare, I struggle to feel like I have energy. Feel wrecked most of the time etc. Started on infliximab and Imuran after last flare and I've seemed to settled for the most part. So is ridiculous levels of tiredness just another part of the illness?

Tiredness is a classic flare symptom for me. My guess its from lack of absorption of food as it just runs straight through during a flare.

The_Conductor · 29-12-2018 11:30am

Yes, the complete and utter fatigue- where you can't even think, never mind move- is part of the blasted disease.
I don't know whether its because of the malabsorption of certain vitamins and minerals- though that would make sense.
Its hard to convey to people just how exhausted you are- especially when in their eyes there is no reason for you not to have any energy- and a lot of the time you are accused of embellishing your tiredness to try and get out of things, when this simply couldn't be further from the truth.

batgoat · 29-12-2018 11:43am

The_Conductor wrote: »

Yes, the complete and utter fatigue- where you can't even think, never mind move- is part of the blasted disease.
I don't know whether its because of the malabsorption of certain vitamins and minerals- though that would make sense.
Its hard to convey to people just how exhausted you are- especially when in their eyes there is no reason for you not to have any energy- and a lot of the time you are accused of embellishing your tiredness to try and get out of things, when this simply couldn't be further from the truth.

It's so mad, eg a I'm running about every second week. Just because tiredness is awful. Gonna try to fight it a bit more so it's weekly. But fitness is definitely going up and does nothing for energy. Had hoped it was steroid related but been off them for months now.

In relation to cannabis btw, there's plans to offer medicinal on a proper scale from next year.

Irishgay84 · 29-12-2018 7:23pm

Sorry for asking this question here but does anyone know if Crohn’s affects your libido? I got diagnosed with it last year and thankfully I’m well again but I have little or no interest in sex since despite feeling well again. I’ve been trying to find out if imuran or humira affects yours libido but I’ve been told they don’t.

Gael23 · 29-12-2018 10:02pm

Irishgay84 wrote: »

Sorry for asking this question here but does anyone know if Crohn’s affects your libido? I got diagnosed with it last year and thankfully I’m well again but I have little or no interest in sex since despite feeling well again. I’ve been trying to find out if imuran or humira affects yours libido but I’ve been told they don’t.

Chrons does.
If your feeling like crap your not exactly going to feel too spicy in the bedroom.

Irishgay84 · 30-12-2018 12:40am

Gael23 wrote: »

Chrons does.
If your feeling like crap your not exactly going to feel too spicy in the bedroom.

I understand that but my point is I’m feeling well again. I do have some fatigue from time to time but nothing major. I was just wondering is it a side effect of the drugs.

patnor1011 · 30-12-2018 11:05pm

My last flareup is going on for so long I even forgot how it feels to feel good. Really. But week 10 on steroids and I started to feel better in the last 3 days.
I guess there is no definite answer to your question about loss of libido it is rather an individual thing as in my case the force is strong even if I am at my worst.
Go figure.

Northern Monkey · 03-01-2019 8:49pm

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!

Crohn's Disease

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