Crohn's Disease

princess-lala

Lads any experience with Humira?

Turtwig

Injection wise it's fine only last about six seconds. On occasion the site can sting for a while. I think the skinnier you are the worse the injection is as it's easier to hit your muscle tissue. Key is to actually stretch the muscles not compress them. When you stretch them and pinch you'll likely grab nothing but skin. Took me a long while to figure that out! Worst experience was a shot in the thigh that me dragging the leg behind me for about two days.

Drug wise it's strong. Gimps your immune system. Chest infections and stuff become more common- and an infection let run can easily become fatal. From personal experience the drug is totally worth it. Made a massive difference. The drug has the slogan 'rediscover life' one of those rare occasions where I felt the advertising lived up the name.
Last year normal for me was having every breath sting my entire throat and barely be able to move. I couldn't stand outdoors, hated wind and the heat.
For a good portion of this year normal was standing on a cliff face getting pounded by icy cold sea wind. Ah it was a beautiful feeling. Almost cried the first day it happened.

Right now my health is going through a decline. No idea why, but I guess I can't rule out the possibility that it's humira related and that scares me because I found the drug very bloody good.

Northern Monkey

Pretty similar experiences to Turtwig on humira. You will see a few posts up that I had my first flare up since last August and it is no coincidence that I started humira around then. My life has been transformed as a result of it. Can eat what I want and luckily have had very few issues with loose bowels (apart from last week). I definitely have more issues with throat infections, colds and flu's,etc. since taking it, but it is a small price to pay considering the quality of life I've got back through it.

It was originally reluctant to switch to it, but I'm really glad my consultant made me do it.

The_Conductor

I was advised by my consultant that Humira, and other immunosuppressants, were best used earlier in the disease, as a maintenance drug, and after my longterm use of immunosuppressants, he couldn't recommend it for me. At the moment I manage flareups with oral deltacortisone (where possible)- with occasional blips where hydrocortisone becomes necessary.

Big issue for me is constant leakage, temperature control, and I often get dehydrated, as I'm just not absorbing fluid.

Turtwig

Yeah there does seem to be a growing argument for a 'top down' approach. Agressive treatment of TNF Alpha inhibitors from the start and then phased down to immunosuppressors or maintainance drugs like pentasa or asacolon. Can't see the HSE ever agreeing to fund it that way though. Anyway, the jury is still out on it.

As an aside: I find the deltacortisone (the purple resistant one) brilliant! Don't think the other steroids I've been on were near as effective. The less said about my experiences with Entocort the better.

princess-lala

Im on pentasa since the end of February! As well as the steroids (dosage varies depending on being an in or out patient)

I have zero energy, I am trying to keep going as normal but its getting harder and harder each day!

Am back to the hospital on Thursday and hoping to get something to help me in some way

The_Conductor

Pretty much in the same boat here.
All I can really advise- is you ask your gastroenterologist- for a referral to a haematologist. One of the wonderful things about Crohn's is our inability to properly absorb the full spectrum of vitamins and minerals we need (aside from the obvious ones- B12, Foliates, Iron etc).

By rights you should be getting bloods done on a regular basis to keep an eye on where you are- and if you're becomming deficient in any area, they'll catch it that way.

Some days I survive on strong coffee with lots of sugar- along with a Berocca or two- to give myself a boost- but as often as not- I'd rather curl up in a ball and rest, if possible, nap- but rest otherwise.

Mention all your difficulties to your consultant- he may think you're perfectly fine- its only when confronted with just how debilitating things are- and how lethargic you are- that he or she will actually start to do something about it.

princess-lala

Hes a bit of a dork in the sense where unless I shout about all the problems he does he does nothing!

When I was an in patient my bloods were done daily, absolutely nothing since!

It's a pain in the arse - pardon the pun

The_Conductor

princess-lala wrote: »

Hes a bit of a dork in the sense where unless I shout about all the problems he does he does nothing!

When I was an in patient my bloods were done daily, absolutely nothing since!

It's a pain in the arse - pardon the pun

You can get iron levels checked in most pharmacies- costs about a tenner. I got mine done this afternoon. Its not precise- but it gives you damn good idea whether you need followup or not.

Janedoe10

The_Conductor wrote: »

You can get iron levels checked in most pharmacies- costs about a tenner. I got mine done this afternoon. Its not precise- but it gives you damn good idea whether you need followup or not.

That's handy to know . Is it boots that you can ask for this ?

The_Conductor

Janedoe10 wrote: »

That's handy to know . Is it boots that you can ask for this ?

The local pharmacy here in Lucan- next to the Centra, do a plethora of blood tests on site- all pin prick tests though (so perhaps the accuracy may not be 100%). I've seen similar in other pharmacies.

Turtwig

Lala,

Fatigue is a nuisance. It's impossible to explain to people too because on the surface you look fine. As Conductor said get everything you can checked possible nutrients and minerals wise. Blood only tell part of the story. Find out if you have any other competing symptoms or foods that may be aggravating your fatigue levels. This isn't going to be straight forward. In Ireland, it will probably take the course of an entire fecking year but it's best to be sure you have no other underlying diseases or issues contributing to the fatigue. You already told me of one that you have that does. Having Crohns on top of that doesn't make things any easier. Crohns itself can contributed towards a higher chance of other conditions that cause fatigue e.g arthritis, DVT, heart failure.

In general with Crohnsies fatigue is there even when the flare-ups aren't. Certain foods are more exhausting to digest than others. The body is constantly fighting itself with its own inflammation. Steroids, and other meds you may be taking, are suppressing the immune system meaning your body will be put under more strain by invaders. Steroids may also give you highs and lows. Pain Killers may fatigue you more. Experiencing pain itself will fatigue you. The list goes on. . .

There are some general strategies that you'll find online. These are ones from personal experience I found helpful.
(Note: These are ones I found helpful they may be an absolute disaster for you! So take with a pinch of salt and try whatever you wish/feel.)
Sleep as much as possible without a waking alarm. I require 10 hours sleep, somedays that grows to 12 or more. If you can, when you're tired get a power nap of about 30 minutes. I was fortunate enough that in the place I worked my employer was ok with me having naps during lunch and sometimes sleeping slightly past the lunch hour. Sleep when you need to. It sounds odd but tasks always get done in less time when you're not drained. So where possible postpone sh*t that you can do fresh. Not always possible but if you can try wherever possible.

If you can avoid caffeine so you don't have a tolerance of it for when you really need it. Sounds paradoxical because caffeine can be all that feels like it's keeping you going but it's also responsible for intensifying the crashes. So, where possible, eliminate it to moments where you really need that 'kick' you get from it.

Partake in cardiovascular exercise. Stuff that gets your heart pumping and preferably choose low impact like walking, music conductor that sort of stuff where you don't have any strong pressure change in the abdominal region (or upper chest/throat if those are affected). Obviously in the aftermath of a flare-up this one is impossible but once some level of normality begins to resume see if you can exercise -and when you can do. The first few weeks you'll feel even more exhausted but after that you'll find yourself a little bit fresher for longer. (Hopefully!)

Other general crap is to get the tedious shopping, banking and stuff done when the crowds are small. So you spend less time doing the mundane tasks. So, try buying the groceries and stuff early in the morning or late at night. That way you'll have a little bit more time or energy for fun shopping or other fun stuff. It also pains me to say it, but depending on the level fatigue you experience you may have to contemplate changing your job. Obviously that depends on a lot of factors.

There is a chance that fatigue is going to be a significant part of your life from now. That doesn't mean you won't be able to manage it such way that it's effects are greatly minimise. Try talking with your GP too about possible strategies to minimise it.

Regarding your consultant, if you're not happy with them then talk to your GP about seeing another one. Or go privately and then get that consultant to take you publicly. Costs a fair bit of money but there's nothing worse than having a doctor who doesn't listen to you. It's possibly the most frustrating thing in the world. The one person you expect to help you with your problems doesn't even acknowledge your problems to begin with!:mad:

princess-lala

Thanks for all that Turtwig

You and i have spoken about this before my diagnosis was confirmed. You explained alot of medication to me. for that I am very grateful

I also have fibromyalgia - stupid body.

Wait.....food can cause fatigue? ?? WHAT???

The only time since all the medication started that I have had any energy was when I was in hospital and having the steroids injected 4 times a day - ok I was bouncing off the walls but I felt normal!

The fatigue I can almost cope with because im well used to it with the fibromyalgia but the pains I am unable to cope with! While my doc is very good (apparently) and the IBD nurse is amazing I'm just not sure they're fully listening when I say things so I'm going to my appointment Thursday armed with a book filled with everything since I've left the hospital.

At the minute this is the nearest hospital with a gastroenterologist in it from what I know - I am going to double check that tomorrow. Also going private isn't an option at the moment.

As for changing job - its the only thing in my life that keeps me sane! I'm one of those few people who can say they love their job

Turtwig

It may be a terrible 'comfort', but you'll probably get used to the pains as well - or well, a bit more tolerant anyway. Get whatever pain killers you can and try to alleviate thing as much as possible. Even stuff like posture can help. I'm almost a hunch back now because of how much I huddle forward and put strain on the back as opposed to the stomach. It helps! I've probably fecked my spine though.

It takes energy to break down foods. Your system that breaks it down is compromised. So any foods that require extra effort for the digestive system to breakdown and absorb will tire you that little bit extra - or a whole lot more.

It might just be me but if I have something with high amounts of milk in it I'm knackered. There's not necessarily any pain from them, I'm just full on knackered. So, I tend to avoid milky stuff. Among a whole host of other things.

While we're on the subject, what other tricks or lifehacks do chronsies have for the fatigue and whatever other obstacles the condition throws at you?

princess-lala

Christ alive I'm learning more and more about this stupid disease every day

Actually - now this could be totally unrelated (I'm guessing not) but since I came home from hospital the last time I have these weird spot/boil/cyst type things on my upper body and neck! Very few are painful but two (one either side of my neck) are seriously painful and very visible

Da fuq is wrong with me I look like yer man from the addams family

shalalala

This is a bit of a personal one.

I am going through some difficulty in my relationship at the moment. I feel constantly nauseous and have bouts of diarrhea. Eating is basically not happening.

I get like this when I am really upset which is normal for me. This tends to be how I cope with stress. But I have never had to deal with it with Crohns before. I just want to know how bad it could be for sparking a flare up if this continues for any amount of time. I am sure someone out there has had crohns with a very stressful time! The eating thing is the thing I am most concerned about. My stomach is so upset I cannot even look at food but my nurse etc. has told me I should eat regularly.

Any help appreciated (also sorry for the vent)

shalalala

princess-lala wrote: »

Christ alive I'm learning more and more about this stupid disease every day

Actually - now this could be totally unrelated (I'm guessing not) but since I came home from hospital the last time I have these weird spot/boil/cyst type things on my upper body and neck! Very few are painful but two (one either side of my neck) are seriously painful and very visible

Da fuq is wrong with me I look like yer man from the addams family

you have a picture? I got shingles after my colonoscopy

Turtwig

princess-lala wrote: »

Christ alive I'm learning more and more about this stupid disease every day

Actually - now this could be totally unrelated (I'm guessing not) but since I came home from hospital the last time I have these weird spot/boil/cyst type things on my upper body and neck! Very few are painful but two (one either side of my neck) are seriously painful and very visible

Da fuq is wrong with me I look like yer man from the addams family

Ugh!
Lesions and ulcers of the skin can apparently be a extra-intestinal manifestation of crohns. No idea how that's diagnosed or determined though That's for your GP or a dermatologist to determine. Personally, get some sort of skin infection/breakout of ulcers like thingies every now and again that my GP just gives me antibiotics for. Nothing of the kind you're describing though.

shalalala wrote: »

This is a bit of a personal one.

I am going through some difficulty in my relationship at the moment. I feel constantly nauseous and have bouts of diarrhea. Eating is basically not happening.

I get like this when I am really upset which is normal for me. This tends to be how I cope with stress. But I have never had to deal with it with Crohns before. I just want to know how bad it could be for sparking a flare up if this continues for any amount of time. I am sure someone out there has had crohns with a very stressful time! The eating thing is the thing I am most concerned about. My stomach is so upset I cannot even look at food but my nurse etc. has told me I should eat regularly.

Any help appreciated (also sorry for the vent)

No need to apologise for venting. Sure, that's what this thread is for. If it's not I sincerely apologise for all my rants.

Supposedly there's no correlation or causation between stress and flare-ups. If you're stressed a flare-up will just feel worse. In my experience, some of my worst flare-ups have actually occurred at the real 'high' points in my life. Which pissed me off incredibly :mad:. At first I thought flare-ups were mostly stress triggered but with hindsight whatever my mood has been flare-ups have just seemed to strike. Tummy get's antsy when nervous or stressed but that has happened loads of times with no flare-ups. It's just my personal experience though and the statement in the first sentence is just a generality and absence of evidence isn't evidence of absence. In short, nobody really knows for certain but the current consensus seems to be that the folks who research this stuff don't think so.

Generally speaking from personal experience any time I was stressed flare-ups suddenly felt a lot worse. I think everything does when you're stressed. Flare-ups themselves bring on stress. So whatever you can do to manage and alleviate the stress do it. Can't really comment about whether you should eat or not. Eating sounds like a good idea but really haven't a clue. Know from my own experience that anytime my stomach is an antsy bugger eating a lot never tends to be a good idea. When my tummy is antsy I stick to stuff like bananas or just a bit of toast. Your nurse or GP should be able to tell you what might be least likely to upset the stomach further. If you can of course. If you can drink maybe? Or a liquid diet, or has anyone even spoken to you about those.

Only thing I would say with any conviction is be as nice to yourself as possible. Vent, do anything that helps with destressing that sort of stuff.

princess-lala

shalalala wrote: »

you have a picture? I got shingles after my colonoscopy

Nah its definitely not shingles.

There's only 3 that are painful and they're on my neck.

OUTDOORLASS

Morning All,
I started on 6MP/Puri Nethol on 01 Jan 2006, and added Humira to the mix, in May 2011.
Rotated the site, thigh being the worst. For the past year and a half, my other half injects it into my bum, which has
plenty of fat to absorb the sting.....
Crohns very well behaved, I had been diagnosed as Chronic Crohns. Ongoing problem with fatigue. Wouldnt have the problem with colds etc that some of you mentioned.

princess-lala

Thursday is getting so close and now I'm freaking that I'm gonna forget all my questions

OUTDOORLASS

Have you them written down. Or could you ask somebody to go with you. Usually, your head would be so bothered, you might not remember what was said to you. The other person,s head would be clearer and be able to take more in.
Best of luck

Janedoe10

princess-lala wrote: »

Thursday is getting so close and now I'm freaking that I'm gonna forget all my questions

Best of luck . And anything you need to clarify ask there and then, it's better than having to do dr. Google on it later

Turtwig

Lala,

Maybe type/write all the questions queries and experiences you feel you need to mention? If you're me, take a photo of the sheet of paper on your phone and also bring the sheet of paper with you. (The photo is in case you forget the sheet. ) You're likely not going to think of everything vital in the small about of time you have with the consultant. So have everything prepared and tick the questions and experiences off as you go?

I find it helps too to grade stuff e.g
Pain, it's location, how constant it is and a scale of 1-10 of what you'd rate it as.

Janedoe10

Hi all .

remember we have until the 30th June to upload your condition on the HSE
Expert panel http://www.hse.ie/eng/services/Campaigns/eligibility.html why you think Crohns ileostomies e.t.c should have a medical card.

There is also this petition to our lovely current minister for Health to include IBD in long term illness card .. this is up to 5500 signatures at the moment

https://www.change.org/en-GB/petitions/james-reilly-add-crohn-s-disease-and-ulcerative-colitis-to-the-long-term-illness-scheme?recruiter=102873215&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Northern Monkey

Janedoe10 wrote: »

Hi all .

remember we have until the 30th June to upload your condition on the HSE
Expert panel http://www.hse.ie/eng/services/Campaigns/eligibility.html why you think Crohns ileostomies e.t.c should have a medical card.

There is also this petition to our lovely current minister for Health to include IBD in long term illness card .. this is up to 5500 signatures at the moment

https://www.change.org/en-GB/petitions/james-reilly-add-crohn-s-disease-and-ulcerative-colitis-to-the-long-term-illness-scheme?recruiter=102873215&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Done and done:)

OUTDOORLASS

Done and Done. Tks for letting us know about these.

CarrickMcJoe

Done and done, wouldn't have known only I saw this post, thanks.

shalalala

I am struggling at the moment. After a really tough month and a half my body has now decided to flare up. But regardless of that it is the mental aspect that I am finding hard.

I just don't like my body. I know I have it good compared to a lot of sufferers, I haven't been operated on or anything. I just feel like my body is failing me. It is attacking itself and I am just so angry.

I am 25 and newly single. Full time job which makes me exhausted all the time. You may as well be dating a 90year old!

I know that we just have to deal but I just don't want to. As I said before I know that there is tonnes worse out there but I am just not feeling it.

Sorry about the rant. I just wanted to get it all off my chest!

OUTDOORLASS

Morning Shalalala,
My heart goes out to you. Rant away, and get it off your chest. All the other Chronsies understand what you mean, whereas somebody who doesnt have the damn disease, wont. i.d give you the biggest, warmest hug if I could....x