Crohn's Disease

pinkyc

hi guys, im just looking for some advice and if ye could help it would be great =]! unfortunately i havent been well for the past while even as i type this im in bed sick =[! my medication has been changed from infliximab (every 6 weeks) to Humira recently (every two weeks). But since the change there's no improvement infact i was better on the infliximab, the thing is I'm terrfied of the Humira, its not the needle im fine with needles but the fluid going in KILLS ME, i just cant hack the pain, I'm loosing out on sleep worrying over it. I want to be able to do it as it'll be much handier than going to hospital every 6 weeks for a day.
is anyone else the same?
does anyone have any advice?
thanks guys

BrianJD

Hi pinkyc

Are you using the pen rather than the syringe. I find it much easier because while I know the pain is horrible for the fluid going in, I know it is only 3 seconds of pain. I take Humira every week and another way to help is to use something from the freezer to numb the area. Just remember it's only 3 seconds of pain every two weeks. You will get used to doing it quickly so it won't be such a big deal either and you won't have time to build it up in your head. Good luck 8)

pinkyc

thanks BrianJD =]! yeah sorry i should have mentioned it but its the pen I'm using =]! that's what i have been saying to myself because I want to do it but theres like a mental block towards it or something =[! I'm glad to know though that I'm not the only one it hurts i thought i was building it up for nothing and being a drama queen. Theres a close family friend who used to be a nurse and i have asked her if she would do it, i know i should do it myself but at the moment i can't. so she'll help me with it.
Thanks for taking the time to reply, I'm feeling abit better knowing I'm not the only one, and thanks for the tip of using something from the freezer to numb the area i must try it xD

Richard Dower

pinkyc wrote: »

thanks BrianJD =]! yeah sorry i should have mentioned it but its the pen I'm using =]! that's what i have been saying to myself because I want to do it but theres like a mental block towards it or something =[! I'm glad to know though that I'm not the only one it hurts i thought i was building it up for nothing and being a drama queen. Theres a close family friend who used to be a nurse and i have asked her if she would do it, i know i should do it myself but at the moment i can't. so she'll help me with it.
Thanks for taking the time to reply, I'm feeling abit better knowing I'm not the only one, and thanks for the tip of using something from the freezer to numb the area i must try it xD

Hey Pinky - the pain is fierce alright , i'm on the same dosage as yerself, i find if you look around your tigh area, find a nice juicy bit, with a good bit of fat (not saying your fat ) area and just grimmace alot. Did you get the welcome pack from Abbot?...they give you an ice pack + lots of other goodies

It's 10-15 seconds, as you say it's the liquid going in that cause pain, not much you can do really....you gotta weight the benefits as opposed to the downside.

I'd much rather Humira then those bloody steroids!

Melis

pinkyc wrote: »

hi guys, im just looking for some advice and if ye could help it would be great =]! unfortunately i havent been well for the past while even as i type this im in bed sick =[! my medication has been changed from infliximab (every 6 weeks) to Humira recently (every two weeks). But since the change there's no improvement infact i was better on the infliximab, the thing is I'm terrfied of the Humira, its not the needle im fine with needles but the fluid going in KILLS ME, i just cant hack the pain, I'm loosing out on sleep worrying over it. I want to be able to do it as it'll be much handier than going to hospital every 6 weeks for a day.
is anyone else the same?
does anyone have any advice?
thanks guys

Hi

I am on Humira injection once a week :mad: Hate them too. I started on the pens and my Brain would not like me press the bottom my whole body frooze. I am on Humira about 1 and half and I dread every single Monday as thats when I do it. They changed me to the syringe and they are a bit better bit I break out ib lumps after I have done them and it is so painful going in.

Its not nice. Hope you feel better soon.

Richard Dower

I hadn't posted/updated since June...but things are grand, 100% remission, that flare up i had for 6 weeks...weird. I was grand for 9 years then bam!, dunno why it happened. But it was a pretty short term and drama free flare-up.

The Humira and steroids nixed it quite well, i'm back to my old habits of eating pretty much anything, but one thing i did drop was my Coke addiction, as in the beverage :-)

I used to drink 2-3 litres a day, but i've stopped all that now....i doubt that was the cause but it couldn't be good in general. Pretty sure now that'll be the last for sometime...b=maybe a few more years god willing.

Happy Xmas to all and all those currently going through it....keep fighting!

ladybirdirl

Kildare lad

there is a facebook group for crohn's & there has been a few meet ups from that..if you join the group you'll see more details

Also after the ISCC open day there is usually a social event.

This thread is also a great place to chat & get info

LB

questionsabout

Hi everyone,

First off, I hope you are enjoying the festive season:)

I have Crohn's myself, diagnosed for the past 4 years and I wanted to share this video I came across yesterday...

I think people need to know about this and wake up to the fact that conventional drugs really do not work or cure crohns...but people have been cured...

I myself have not tried it, I currently use the Specific Carb Diet plus meditation and visualisation...no drugs of any kind...no operations.....but I will be trying this or hemp oil when I get the money and the time to do it.... and I will document the experience for those who may be interested.

I also want to state that I have no connection with either the video or the diet... just passing on some great healing information... I am tired of the needless suffering of countless people, particularly children, when there is help at hand...

I wish you well with your health...

Andrew


http://www.youtube.com/watch?v=37bmbj1uTsk&NR=1

mad_fish

Hi Pinky,

One other bit of advice I would add on taking the Humira that was mentioned to me by the Abbott nurse is that it is much easier to take while sitting down.

If your anything like me you tense up and pace about to try and pysche yourself up to it. My advice is a few deep breaths, throw some frozen peas or something on the area and sit down and make sure to "hold" out the area before injecting, that does help!

In saying that I have been on the Humira a year now and still have to try and calm myself down before taking the stupid thing...

pinkyc

heya guys,
thanks for all yer help and great advise. finally I'm after plucking up the courage and I've now gotten the Humira twice since my last post, even though its a nurse injecting me for now, but i will be able to manage it myself someday I'm just not ready atm =]!
but thanks a million to everyone whos helped me face my fears, it means alot.

LucyBliss

pinkyc, the important thing is that you're getting your Humira! Sometimes we need extra help with things and that's no shame.
How are you feeling these days?

HigginsJ

Im getting my 1st vitamin b-12 injection. What is that like??

The_Conductor

HigginsJ wrote: »

Im getting my 1st vitamin b-12 injection. What is that like??

Its a deep intramuscular injection- same as your flu jab for example. Once you've had it a few times, you don't really notice it anymore. I give it to myself, saves on GP bills, not to mention the bother of having to organise to go over. Its not a big deal, seriously, you hardly notice it at all.

LucyBliss

The B12 injection is fine. I go to the GP for mine, I'm lucky that I have a medical card and considering some of the other things we have to go through with UC/Crohns, it's a doodle. You might feel a bit of a soreness through your arm or up your neck right after it because it is a deep intramuscular injection, like smccarrick said, but it's a fleeting thing. I usually just shake my arm and it's gone.

But the benefits of it really outweigh any discomfort. I got one last week, I was so caught up with course assignments and Christmas preparation that the days got away from me and I never got a shot. Tiredness hit me hard coming up to New Years, but this week is going a lot better and I'm actually getting stuff done which is always nice.

HigginsJ

Got b-12 this morning. That was fine.

Wayde

Test

LegacyUser

My Story - this is great especially if ur new like me to Crohns. I have never been sick before this. Had been getting tummy pain for about six months but was not enough for me to go to doctor. But one weekend was away with family and during a 2 hour hike up a cliff I was giving myself a hard time as I was so far behind everyone else.
That Wednesday went to doctor as pain was getting worse. She gave me pills but 2 days later I phoned her in agony as i was getting much worse. My white blood cells were 750 which ment my body was fighting an infection. She sent me to a&e.

They had no clue what was up. An Xray, ultrasound and ct scan later they decided to open me up for a look. I woke up after surgery to be told I had a left hemicolectomy. Shck to the system or what. Had morphine on tap - had the whole ward in stitches. 10 very long days in hospital. The doctors could not understand how i had no symptoms beforehand. They said i must have a very high pain threshold.
My gastrenteroligist said my b12 was 9 i think which means ive probably had crohns for quite a while. I had lost 7kg from when i went in to hospital to when i came out.
Surgeon said diarrhea would last about a month after op. 4 months later i still have it. Help! Can I do anything to improve?

I still believe I will never have any problems. It has not sunk in that i have this disease. I hear the word flare up but ive never had one.

pinkyc

Lucy Bliss- sorry it has been awhile since i replied to your question on how am i feeling? well honestly there is still no change infact I'm getting worse I've missed so much college too now thats stressing me out which is def not helping. I'm going into hospital friday 4th feb for a few tests so hopefully I'll be sorted then because I'm getting quite sick of it now tbh as I've been sick since november- everyday except for one =[. so I'm just looking forward to getting better now, thanks for asking for me, i hope you're well =]

HigginsJ

I have been shattered tired for the last week. Been getting good 8-9 hours sleep. Would this be due to lack of B-12. Have injection again next monday. How often do people get their B-12 injections?

geor

I started taking some Vitamin d3 last week, feel much more energy!

Anyone else tried it, I have US, never had a b12 injection, how do you know if you need one?

The_Conductor

geor wrote: »

I started taking some Vitamin d3 last week, feel much more energy!

Anyone else tried it, I have US, never had a b12 injection, how do you know if you need one?

The only way of knowing whether you need a B12 injection is by doing a blood test. However- anyone with Crohn's, who has had surgery, almost universally has had their terminal ileum removed (often a lot more besides). The terminal ileum is the only part of the gastro-intestinal tract which is capable of absorbing B12 from ingested food. If you have Crohn's and have had surgery- you almost certainly need B12 injections (frequency can vary considerably from person to person). If you have Crohn's and have not had surgery- you may have impaired B12 absorption and may be unable to satisfy your B12 needs from dietary intake. You can only tell, once again, from blood tests.

geor

thanks for the info, i actually have Colitis, no surgery so far (thank God!)

Ladjacket

I thought I would share my story if anyone is interested. I was in Paris at the Ireland game last year, came home on the Friday morning, on the Sunday morning I could not get out of bed for the pain. I went to the doc's who told me that my appendix were going to bust if i didnt get to hospital. I raced up the road and they told me that it was routine op and i would be fine.

I woke up on the monday morning in the ward and was in agony. I was hooked up on morphine and when the docs came around there was mention of crohns disease. No one told me or my parents a thing for over a week. I was not allowed to eat or drink water for 3 weeks. I was on this big white bag of nutrients - thats what fed me. I had gone from an athletic fit guy to a helpless wreck in the space of 2 weeks.

They let me out of hospital just before xmas and it was the worst time ever - i could hardly sleep with the pain and thye called me back into hospital around the end of january for CT scans and colonoscopy. In Feb i was diagnosed with Crohns. I started Infliximmab treatment in April and I have been feeling great since.

I have had an MRI and repeat colonoscopy which have went well. I have never had any symptoms of Crohns in my life, which does make me tend to wonder just exactly went on. What i was tld at hospital was that the surgeons team performed the appendix op and it was complicated so the had to call him in then. Apparently my bowel and appendix burst. Tough time eh?

I am due to finish infliximmab in April and may be put on something else - i dunno what to feel about that!

Dan133269

Has anyone asked their local prospective TDs or anyone campaigning what their positions are on getting Crohn's and Ulcerative Collitis recognised as a long term illness so it will qualify for free medication?

Pet

Capsule endoscopy in Tallaght hospital next week. A mixture of feelings, to be honest! But I can't wait to get the images of my intestines back, that'll be a right larf.

The_Conductor

Platelet transfusion tomorrow myself

cupcake6

Hello, first time on boards.
Just wondering if anyone has had or heard of anyone who has had problems with fistulas?

I had a fistula after surgery in June 2007 but has developed into a sinus. Its not healing up after 3 more operations. On a vac treatment at the moment but not sure if its working.

I haven't had a flare up since my operation in 2007 & not on any medication so I'm very lucky but this sinus has held me back so much.

CarrickMcJoe

cupcake6 wrote: »

Hello, first time on boards.
Just wondering if anyone has had or heard of anyone who has had problems with fistulas?

I had a fistula after surgery in June 2007 but has developed into a sinus. Its not healing up after 3 more operations. On a vac treatment at the moment but not sure if its working.

I haven't had a flare up since my operation in 2007 & not on any medication so I'm very lucky but this sinus has held me back so much.

Yes I developed a fistula which for me was the final straw. I had UC for 10 years at that stage and opted for surgery and now I have a bag. It just kept filling up with pus and crap and was extremely painful.
Think about 1/4 of sufferers get them but they can be slow to heal.
Good luck.

cupcake6

Thought I would have to get a bag too but they wouldn't go near the bowel as I ended up on a ventilator for 3 days after the first operation he did. Thanks for your reply:)

LucyBliss

My first Crohn's symptoms were fistulas. They were a recurring problem until I started on Immuran back in 1996 and then they stopped. But I well remember the agonising pain and the crazy contortions I'd have to do when sitting or getting up from the chair in order to avoid hurting them.

cupcake6, I hope they get sorted out for you soon.

Best of luck to Pet in next week's endoscopy!

smmcarrick, hope things went well during the transfusion.