Crohn's Disease

Tony H

Riven_Sky wrote:

Ha, yes, it's not the most obvious piece of equipment. I had my humira pack for six weeks before I actually started the injections so the gel cushion's purpose eventually came to me.

Forgot to use the gel pack ,had the injections and they were fine ,only a small bit of discomfort ,no real pain involved .

The_Conductor

Guys- just missed a call from the nurse. She is going to be at my home address @ 3PM tomorrow afternoon (according to the message she left). If I get home for 3PM- how long does it take to take the injections- is 10-15 minutes ok- or is it longer- and if so- how long? I wasn't planning on getting it done at home- but I don't have any way to contact the nurse to change the location now.

I'd be really grateful if someone could tell me how long I'll be with the nurse for the first set of injections. My wife is panicking here that I'll not be on time to collect her from work, and the kids from creche etc on time.

I'm really freaking out here- I hadn't intended on having to go home during the day........

The_Conductor

Also- where do you get the icepack from?
I've just unpacked the 2 boxes I picked up in the pharmacy- I've 4 pens and 4 alcohol wipes- nothing else. Is there some 'starter pack' type thing- that I'm missing? Does the nurse give it to you- or is the pharmacy supposed to?

Also- is it supposed to be fully covered under the 144 a month? I've paid over 200 and counting so far- I know its only a fraction of the cost of the Humira- but its way over the 144 too........

Northern Monkey

I'd say the nurse wasn't with me any more than 30-40 minutes. The injections take no time. There is a booklet to fill in as well, but not too many pages from what I remember. Also, be prepared for injections in both your legs and stomach as they use all sites for the loading dose (or at least they did with me).

The ice pack came with the black information folder, but I'm not sure if they still do them. I've never used it and the pain isn't too bad.

Edit: mine has only ever been 144 a month. Have you used the same chemist for everything this month? Sometimes using more than one can cause issues with the fee cap.

Tony H

The_Conductor wrote: »

Guys- just missed a call from the nurse. She is going to be at my home address @ 3PM tomorrow afternoon (according to the message she left). If I get home for 3PM- how long does it take to take the injections- is 10-15 minutes ok- or is it longer- and if so- how long? I wasn't planning on getting it done at home- but I don't have any way to contact the nurse to change the location now.

I'd be really grateful if someone could tell me how long I'll be with the nurse for the first set of injections. My wife is panicking here that I'll not be on time to collect her from work, and the kids from creche etc on time.

I'm really freaking out here- I hadn't intended on having to go home during the day........

the nurse was with me about 10-15 minutes , basically she gave me the first jab and made me do the other three , I was surprised how easy it was and very little pain , just make sure to take the meds out of the fridge about an hour before use , the jel pack was included in the welcome pack from Abbvie (the makers of humira) , as far as i know the nurse will come at a time convenient to you , she is getting well paid (I assume ) to help you in any way she can .

Best of luck tomorrow

Riven_Sky

The_Conductor wrote: »

Guys- just missed a call from the nurse. She is going to be at my home address @ 3PM tomorrow afternoon (according to the message she left). If I get home for 3PM- how long does it take to take the injections- is 10-15 minutes ok- or is it longer- and if so- how long? I wasn't planning on getting it done at home- but I don't have any way to contact the nurse to change the location now.

I'd be really grateful if someone could tell me how long I'll be with the nurse for the first set of injections. My wife is panicking here that I'll not be on time to collect her from work, and the kids from creche etc on time.

I'm really freaking out here- I hadn't intended on having to go home during the day........

The nurses carry work mobiles, as they cover large areas and do a lot of house calls. If you ring in the morning, you should be able to arrange a change of time or venue to one that's convenient for you.

Unless you mean she didn't leave any number at all, which is very unhelpful. I think, though I'm not 100% certain, that my humira and simponi nurses were provided by the same company, TCP homecare. 1800 936 257 is their number if that's any use. They should be able to put you in contact with your nurse.

The_Conductor wrote: »

Also- is it supposed to be fully covered under the 144 a month? I've paid over 200 and counting so far- I know its only a fraction of the cost of the Humira- but its way over the 144 too........

Definitely fully covered alongside any other meds on the DPS scheme. No more than 144 a month.

Oh, and the nurse will probably bring along a welcome pack for you alongside your sharps container. I remember mine bringing one with her though I already had it.

The_Conductor

Riven_Sky wrote: »

The nurses carry work mobiles, as they cover large areas and do a lot of house calls. If you ring in the morning, you should be able to arrange a change of time or venue to one that's convenient for you.

Unless you mean she didn't leave any number at all, which is very unhelpful. I think, though I'm not 100% certain, that my humira and simponi nurses were provided by the same company, TCP homecare. 1800 936 257 is their number if that's any use. They should be able to put you in contact with your nurse.

Thanks- I'll give TCP Homecare a ring this morning. She didn't leave a number btw- the call from a 'Private number' and a callback via voicemail failed. I wasn't expecting a call from her at 8PM in the evening- and was getting my kiddies ready for bed

Riven_Sky wrote: »

Definitely fully covered alongside any other meds on the DPS scheme. No more than 144 a month.

Great- I'll talk to the pharmacy. She included an emergency renewal for the DPS card in the bag- I guess thats what the issue is. Hopefully I just get the overpayment back next month.

Riven_Sky wrote: »

Oh, and the nurse will probably bring along a welcome pack for you alongside your sharps container. I remember mine bringing one with her though I already had it.

Good to hear it. All I have is a 2 page 'Welcome' leaflet from St. Vincents- which doesn't really say anything at all. I went on google to see if there was information- and ended up looking at websites detailing horror stories- all the possible side effects- with graphic photos........ not what I was looking for.......

From the few comments in here- a tray of icecubes will probably be useful? I'll put them in the freezer this morning for later this afternoon.

Riven_Sky

The_Conductor wrote: »

Thanks- I'll give TCP Homecare a ring this morning. She didn't leave a number btw- the call from a 'Private number' and a callback via voicemail failed. I wasn't expecting a call from her at 8PM in the evening- and was getting my kiddies ready for bed




Great- I'll talk to the pharmacy. She included an emergency renewal for the DPS card in the bag- I guess thats what the issue is. Hopefully I just get the overpayment back next month.

I'm surprised she didn't leave a number. I hope you manage to get through to her. I had the simponi nurse ring me on a Sunday evening, I remember I could hear her kids in the background.

Once you've that form filled out, the pharmacy are able to apply the DPS limit even without a card. At least that was my experience last time I was without one. Worth trying if you've more medications to buy this month.

wrote:

Good to hear it. All I have is a 2 page 'Welcome' leaflet from St. Vincents- which doesn't really say anything at all. I went on google to see if there was information- and ended up looking at websites detailing horror stories- all the possible side effects- with graphic photos........ not what I was looking for.......

From the few comments in here- a tray of icecubes will probably be useful? I'll put them in the freezer this morning for later this afternoon.

If you haven't already seen it, the nurse will show you the list of side effects. It is a little intimidating to look at. I suspect it contains everything that ever happened to a person while on humira, whether related or not. For most people the side effects are minor stuff like tiredness the day after the injections, and redness at the injection site which goes away within a day.

The ice cubes will be useful just to numb the site a little, I think it's more like a distraction type technique than anything else. As Tony H found, you don't really need them, but I found it helped. Best of luck with it!

Northern Monkey

I hope it goes well for you this afternoon. One side effect I had for the first couple of months taking it was complete exhaustion the day after the injection. I don't get it anymore, but I switched my injection day to a Friday afternoon so that it didn't interfere with work.

Tony H

Well first day after loading up with Humira and I don't know if its in my head or not but I seem to be noticing an improvement , far less running to the loo (only twice) and the joint pain has lessened a bit as well , then again it might be just the nice weather is making a difference and its all in my head , speaking of weather , do you have to take precautions against the sun while on humira or is that with imuran ?

PS no reactions from injection site or any other debilitating side effects .

The_Conductor

All good here too- the nurse was happy with injections- and has said she doesn't need to come back for the second dose in 2 weeks time. Barely even notice where I gave myself the injections now. Re: tiredness- I'm constantly tired- being more tired tomorrow won't make much of a difference to me one way or the other......

I didn't get any icepack- I did however get told I could have a free cooler bag, if I'd like to take 5 minutes to subscribe to the Humira magazine. I wouldn't have needed the bribe- I'll happily subscribe.

Where to hide the sharps bucket when you have an inquisitive 4 and 5 year old rummaging everywhere.........?

OUTDOORLASS

Morning, Delighted both Tony H and The Conductor sailed through their initial Humira injections....

Mr Conductor.....provided your prescriptions are for items that are on the list, you should be paying nothing more than
the EUR144 DPS charge. The stuff I am on is well over the DPS level. I checked with a friend that is lucky enough to be
on a Medical Card. He pays EUR2.50 per item to a max of EUR25, but for people on the MC, because it is a High Tech drug he does.nt even have to pay the EUR2.50 for the Humira. He is only on a few bits so rarely reached the EUR25 .That is where I got myself mixed up with the "free" Humira.

Best of luck and be sure to rotate the site you inject. Dont use the same spot. I find my butt is a great place. Plenty of padding !! to absorb the sting. My OH administers it there. Your OH would be well used to needles, so ask her nicely and she might oblidge.....

dan1

Hi A few weeks ago I seen a doctor in my local hospital and to cut a long story short he said I am suffering from Crons or coilitis but as yet they dont know which.
I have been going through posts in this thread and a lot of people seen to know the in's and out's of it.

I wonder could anyone advise on what food's to eat and what to avoid.

Is everyone different as regarding eating and is it just a matter of trial and error.
I am 19 and I want to get myself half sorted out now before I go back to collage in September.

Thanks a lot

The_Conductor

dan1 wrote: »

Hi A few weeks ago I seen a doctor in my local hospital and to cut a long story short he said I am suffering from Crons or coilitis but as yet they dont know which.

Colitis is confined to the large intestine- Crohns is not (it tends to start in the illeum and radiate outwards- but can occur anywhere at all in the digestive tract, or externally (as I've discovered)). The treatment for Crohn's Disease or Colitis can be similar- and indeed- many people diagnosed with Colitis are often subsequently given a diagnosis of Crohns. Just because they can't make their mind up as to which one it is- doesn't necessarily preclude treating it.

dan1 wrote: »

I have been going through posts in this thread and a lot of people seen to know the in's and out's of it.

I wonder could anyone advise on what food's to eat and what to avoid.

There isn't a definitive list of foods to avoid- but as a generalisation-

Red meats are hard to digest
If you have Crohn's- you'll find fibrous fruit or veg hell on earth (though ironically you'll often be told they're better for you if you have colitis- though my brother and loads others will dispute this).
Things with flavour enhancers- esp. msg/monosodium glutamate - avoid
Some of the natural emulsifiers- such as carageen- are found in the likes of icecream- and can cause problems (just because its 'natural' doesn't mean its good)
If you're flaring- you should avoid hot/spicy foods and stick with bland things.
If you've advanced to the stage that you have strictures and/or blockages- avoid things like bananas (that are high in potassium)
Alcohol other than in moderation- can and will cause problems. Some people swear they get away with certain spirits, or wine- but the key is moderation.
Smoking or being in the presence of people who smoke- is really bad idea for someone with Crohn's- but actually found to have a medicinal effect for someone with colitis (not that I'd advocate anyone smoke!)
Certain things like popcorn- and/or maize products (including the likes of Cornflakes or other breakfast cereals)- can be hell on earth- avoid.
Highly processed foods- are not a good idea- but then again- they're not for anyone.........

Outside of this- you will have your own trigger foods- that might be absolute poison for you- but that might be perfectly fine for someone else. You'll have have to figure those out for yourself. Mine are tomatoes.

Anyone who doesn't know Crohns or Colitis- and tells you that if you follow such and such a diet you'll be fine- ignore them. If I had a Euro for every time some do-gooder tried to tell me herbal tea would cure me, or some homeopathic remedy, or whatever the fad du jour might be- I'd be rich a long time ago.

What I'd suggest you do- is keep a little notebook. Make a note of anything that occurs to you- and the next time you're in with the consultant or in the GI clinic- make sure you don't leave without answers to anything that is bothering you.

One thing I've found- is the constant tiredness- it doesn't matter how much sleep you get, what time you go to bed at- you will be tired. Don't try to battle it- if you're tired- get some rest. If you're at home- have a nap. If you're in college- introduce yourself to the nurse and they may have a sick room you can catch a nap in between lectures on the worse days.

One other thing- Crohn's or Colitis- does not have to define you- don't let it. If you're having a bad day- take things easy on yourself. You will have limitations that others don't have. You do not have to prove to anyone that you're Superman- you're not. If you do want to have a social life- fine- but ration yourself- I know its hard to tell a student to take things easy- but for your own sake, you really have to.

The guys here are great with all their helpful suggestions- most of us have been in your boots and lived to tell the tale.

Take it easy. Best wishes- I hope they decide on a treatment plan for you as soon as possible.

dan1

Hi Thanks for the reply. It's funny you should mention tomatoes as I had spag bol for dinner today and I knew all about it.
Another thing I noticed is all the things they say are good for you ie fruit and veg can actually cause problems.

One thing I would like to know is say I had a list of foods that caused me no problems and was getting on fine could it flare up for no reason.

Thanks again no doubt you will be hearing from me again

princess-lala

I'm only diagnosed a year!! I am still finding out things and learning daily!

I thought i was doing so so well lately and now my arse is broken in every possible way!!! :mad: I'm so sick and tired of this stupid disease

mcratsix

dan1 wrote: »

Hi Thanks for the reply. It's funny you should mention tomatoes as I had spag bol for dinner today and I knew all about it.
Another thing I noticed is all the things they say are good for you ie fruit and veg can actually cause problems.

One thing I would like to know is say I had a list of foods that caused me no problems and was getting on fine could it flare up for no reason.

Thanks again no doubt you will be hearing from me again

Speaking from personal experience, you could eat the exact same things every day for a month, and you could be fine for three weeks and then have the week from hell. That's just the way the disease works. Also, you're life is suspiciously close to mine. I'm 19, with UC, and I'm going back to college in September... UCD by any chance?

dan1

mcratsix wrote: »

Speaking from personal experience, you could eat the exact same things every day for a month, and you could be fine for three weeks and then have the week from hell. That's just the way the disease works. Also, you're life is suspiciously close to mine. I'm 19, with UC, and I'm going back to college in September... UCD by any chance?

No I'm NUI Galway

Thanks

OUTDOORLASS

Morning All,
Hey Tony H and Mr Conductor...
Any improvement yet in your symptoms since ye started the Humira......
Not being nosy, I would just be thrilled it it was working for ye....
XX

Tony H

OUTDOORLASS wrote: »

Morning All,
Hey Tony H and Mr Conductor...
Any improvement yet in your symptoms since ye started the Humira......
Not being nosy, I would just be thrilled it it was working for ye....
XX

I'm feeling a lot better , joint pain is a lot better any no dashing to the toilet ,no reaction to the jabs either , the injection sites we're a little sore the next day but nothing drastic .

The_Conductor

Pain is much better- but I am exhausted- more tired than I have been in a long time. I actually fell asleap on my feet in Tesco earlier (falling into a shelf of boxes of cereal which jolted me awake).

I'm barely functional- I'm so exhausted- but I'm not running to the toilet as much, and the pain is much more manageable.

Also- amount of gas seems to have increased to completely unreal levels- it was bad before- but now its shot up to unheard of previous levels.......

Tony H

The_Conductor wrote:

Also- amount of gas seems to have increased to completely unreal levels- it was bad before- but now its shot up to unheard of previous levels.......

My level of gas has increased as well ☺ , a bit tired also but I think I'm out more and doing more so I think so that might account for that with me .

OUTDOORLASS

Jeepers, I dont remember an increased prob with gas when I started.
Re the exhaustion. Remember, your poor already much suffering body has been hit with an atom bomb...4 jabs of
Humira, then 2 and next just the 1. It will zap what little reserve that you had. But remember, it WILL start working on the disease itself, and things will get better. Could you perhaps take a day or so off, to give yourself a chance to rest up.
Mind your nutritional intake, plenty of fluids. With this heat, take some of those rehydrate salt replacers. Diorlyte or similar.
A cytamin injection.
Maybe you might start getting better quality sleep if you are not running as much.
Basically, take as much care of yourself for a while till things get better.
Take care. X

cerastes

OUTDOORLASS wrote: »

Hi all, Shalalala mentioned probiotics......are many of you taking them, and what are you taking. seems to be loads of
them around. I.m not talking about the stuff you get in the yogurts..... Prof Shanahan in Cork has done loads of
research on probiotics and various types of bowel disease. I saw the tale end of an article on the telly lately were a
lady had years of bad IBS, she was proscribed some kind of probiotics. She was very sceptical, but after a few weeks
she is a new woman. Anybody had any conversations with their Consultants.... I wonder would Locomotion have any
comments on this...
P.S. Happy Bank Holiday to all...

If you come across the probiotic type perhaps you can update, after getting nowhere with anything I started looking up probiotics myself, came across a good few interestings sites but lost them as I had to restore my laptop, I might have managed to save some as I backed up my bookmarks.
I had tried solgar brand for probiotics and I was wary of any improvements being very temporary but I seemed to have a large improvement but not completely gone, only to lapse back again in the last 3 or 4 weeks, that kind of return to the norm for no apparent reason usually puts me off trying with diets and I effects off the wagon and have some biscuits or other junk even though I mostly eat plainly. I follow the thread even though I don't have crohns or colitis but something else.
I think it feels like my system or whatever is in me got used to and adapted to the probiotics I was taking, that seems a bit mad to say but I think I need a different strain or stronger or more of them, the solgar brand doesn't seem to cut it or I've taken something that has had a bad reaction and takes a while to work out.
I'd read some interesting stuff about the immune system and probiotics, not just topping up with bacteria strains that are supposed to do good but also about how supposedly bad bacteria actually have a place in the gut having beneficial effects and the some of the reasons claimed to be the causes, processed foods from the source and chemicals used in growing them, and how it affects the food we eat and people. It's was hard to dismiss it for me when already there are showing reasons why bees are dying off as a chemicals used widely even in the EU in growing food, some pesticide in particular.

shalalala wrote: »

No doctor recommended them, I did my own research and tbh, the speed of my remission vs my original diagnosis is a miracle and I cannot help but believe it is in part to the probiotics I take extra. I buy the ones on sale in nourish. I cannot remember the name now. Expensive but well well worth it

bc dub wrote: »

Udo's Choice Super 8 is a good one.



EcoDophilus is also good.

I'm trying to find out specific strains so I can try be more effective in tackling problems rather than just hit and miss so if you come across anything in particular.
After reading up I was looking for something with sacromyces boulardi which is a yeast, I'd come across certain strains that are available and I believe prescribed alongside antibiotics in Japan and Korea but can't recall their names right now.
Edit clostridum butyricum known as CBM C.Butyricum MIYAIRI after the Dr that isolated it. Supposedly it inhibits inflammation, I wonder would something like that aid sufferers of crohns or colitis? However it functions in the bowel or other non pathogenic bacteria or yeasts, they seem to naturally inhibit bacteria which otherwise may cause problems, not just because they are doing no benefit but because certain "bad" bacteria strains produce toxin, this may be the cause of inflammation? Obviously the whole affects of bacteria in the bowel is complicated but modern medicine seems to focus on treating the symptoms, not the problem. My own symptoms vary in severity and it seems and I hope never to have as bad as some of the things I've read here, not to say mine aren't debilitating in similar!ar ways too, I've just been through a bad bout, I usually avoid painkillers, in particular certain ones as I had stomach ulcers for a while previously, though now mostly my worst problems seem to be from dealing with the social aspects and not the concern it will get worse, generally my energy levels are ok, although from time to time I'm affected mostly from blood sugar variation to feeling very lethargic,which I usually monitor through diet.

A Shopkeeper

Hi Guys, newcomer to both the thread and unfortunately the illness. I was just wondering if anyone could offer an advice in relation to my particular case.

The only symptom I've ever had has been blood in my stool. I saw Dr.Leyden in the Mater a few months back and he put me on mesalazine, twice daily. So far I'm yet to see any improvement. After paying close attention to my diet I'm now convinced that spicy food is a big no no and causes, what I think you all would refer to as, a flare-up. But again, nothing out of the ordinary but blood in my stool.

Of late however (well, for up to a year) after I go to the toilet, I have very bad pain in my backside. Like somebody has given me a good kick! It lasts for hours and is very uncomfortable. I told Dr.Leyden about it but he had no advice or cause or cure. I hope it's nothing more serious but I was just looking to see if anyone has had anything similar. I read a few pages back people were talking about an ice-pack and I'm not sure what this is/was used for but couldn't help but think it could help me. Not ideal unless you're at home though.

It may sound silly but would any recommend paracetamol or nurofen for this? I don't really like taking anything like that and have rarely in the past but as I said, it's quite uncomfortable so some days I could do with something to help.

Thanks.

shalalala

A Shopkeeper wrote: »

Hi Guys, newcomer to both the thread and unfortunately the illness. I was just wondering if anyone could offer an advice in relation to my particular case.

The only symptom I've ever had has been blood in my stool. I saw Dr.Leyden in the Mater a few months back and he put me on mesalazine, twice daily. So far I'm yet to see any improvement. After paying close attention to my diet I'm now convinced that spicy food is a big no no and causes, what I think you all would refer to as, a flare-up. But again, nothing out of the ordinary but blood in my stool.

Of late however (well, for up to a year) after I go to the toilet, I have very bad pain in my backside. Like somebody has given me a good kick! It lasts for hours and is very uncomfortable. I told Dr.Leyden about it but he had no advice or cause or cure. I hope it's nothing more serious but I was just looking to see if anyone has had anything similar. I read a few pages back people were talking about an ice-pack and I'm not sure what this is/was used for but couldn't help but think it could help me. Not ideal unless you're at home though.

It may sound silly but would any recommend paracetamol or nurofen for this? I don't really like taking anything like that and have rarely in the past but as I said, it's quite uncomfortable so some days I could do with something to help.

Thanks.

Not sure if it is the same pain, mine is more of an itch/burn but absolute agony. I found that aloe vera drink helps a lot

MsGiggles

A Shopkeeper wrote: »

Hi Guys, newcomer to both the thread and unfortunately the illness. I was just wondering if anyone could offer an advice in relation to my particular case.

The only symptom I've ever had has been blood in my stool. I saw Dr.Leyden in the Mater a few months back and he put me on mesalazine, twice daily. So far I'm yet to see any improvement. After paying close attention to my diet I'm now convinced that spicy food is a big no no and causes, what I think you all would refer to as, a flare-up. But again, nothing out of the ordinary but blood in my stool.

Of late however (well, for up to a year) after I go to the toilet, I have very bad pain in my backside. Like somebody has given me a good kick! It lasts for hours and is very uncomfortable. I told Dr.Leyden about it but he had no advice or cause or cure. I hope it's nothing more serious but I was just looking to see if anyone has had anything similar. I read a few pages back people were talking about an ice-pack and I'm not sure what this is/was used for but couldn't help but think it could help me. Not ideal unless you're at home though.

It may sound silly but would any recommend paracetamol or nurofen for this? I don't really like taking anything like that and have rarely in the past but as I said, it's quite uncomfortable so some days I could do with something to help.

Thanks.

Hello A Shopkeeper
Sorry to hear your having a rough time of late, it can be a pesky illness at times !

Regarding your specific pain, I am not sure if I have ever experienced. I have experienced real tenderness and a shooting stinging pain but not like a bruise pain (which is the only way I can describe the type of pain I think your having )

Alot of my pain would be from the sheer amount of times you are in and out to the loo, and I am sure I am not alone in saying that it can get quite painful at times, but unfortunately par for the course i'm afraid...

Sorry, I wish I could be more help to you - Good Luck x

dan1

Hi went to my doc today and he had the result's back from the hospital

Mild to moderate colitis

Am I any better or worse off than if it had been crohn's or is the two similar

mcratsix

I have colitis and my dad has Chron's, and he's a lot worse off than me. He takes humira injections every two weeks, along with a daily sachet of Questran and a good day for him is equivalent to a bad day for me. He's been diagnosed about 30 years and has had three major surgeries, and pretty much no extended period of remission. I've been diagnosed almost four years, and I usually have about 3 bad months a year.

The_Conductor

Update-

A bit of a one step forwards, two steps back for me.
Toilet is a lot better (though I am now on 12 imodium a day- the pharmacist insisted on ringing the consultant to confirm, as the max dose she was willing to give me was 5 a day).

Abdominal pain is a lot better.

Occasional massive bloating- and a quite remarkable increases in gas production- the amount of gas I'm producing is quite staggering- and if I don't expel it- I'm worried I'll cause damage (not to mention the pain it causes). Unfortunately- I have no idea when its just gas- or whether there will be some faecal matter involved too- so I'm still running to the toilet- though for not entirely the same reason.

Problem- issues arising with joint pain. Knees are the biggest issue- but also ankles, wrists and elbows. When I walk up a stairs- you can hear a crackling sound from my knees and ankles- sort of like when you pour milk into Rice Krispies. Its quite painful- but mostly only occurs when walking up stairs. When I lift things- I get similar from my elbows and wrists.

I'm not sure whether this is Humira related or not- but it certainly is far more apparent since my loading dose- to the extent that other people can hear the cracking noises from my legs on stairs- where previously I might have thought I was imagining it- and its a lot sorer.

Night sweats- no change. Temperatures- no change. I have one of the Braun thermometers- it registers 39-40 a lot of the time- which appears to be pretty normal for me.

Bloods are getting worse. My gastro consultant has said he is going to talk to a haematologist about getting me off warfarin when I go back in September- and onto something more appropriate.

Distended colon a bit better- though leakage still an issue (I'm constantly making toilet paper pads- to try and mop up leakage so I don't soil my clothes). Distention is a good bit better though- its no longer actually sticking out- though it is quite raw, and if I rub it at all with wipes when I'm in the toilet, bleeds profusely (not helped by the aforementioned Warfarin).

So- all in all- I'm a bit of a mess- but in a lot less pain than previously- which is a relief- though I still have a long list of problems- which has gotten a few items longer, since I went on the Humira.

The difference in pain- is remarkable- I have to state this- it is quite a relief and this alone makes it worth while- though I have no idea where the hell I'm going to go from here..........