Crohn's Disease

Rachelle

Thanks for the info guys.
Ill say it to my consultant next time im at the hospital. There is a possability ill be starting humira soon so if i learn to inject that maybe i could do the B12 also.
My gp wouldnt give me the go ahead to inject the b12 myself as she said she "didnt want it on her head" if i made a mistake or the injection site got infected. :eek:
Ive gotton used to the discomfort of the B12 shot- its not nice but worth it when a bit of my energy starts to kick back in.:)

ncmc

Rachelle wrote: »

Thanks for the info guys.
Ill say it to my consultant next time im at the hospital. There is a possability ill be starting humira soon so if i learn to inject that maybe i could do the B12 also.
My gp wouldnt give me the go ahead to inject the b12 myself as she said she "didnt want it on her head" if i made a mistake or the injection site got infected. :eek:
Ive gotton used to the discomfort of the B12 shot- its not nice but worth it when a bit of my energy starts to kick back in.:)

Humira is really easy to inject. You will get a nurse who shows you how to do it the first time and you can contact her at any time if you run into difficulties. Make sure your pharmasist orders you the pens rather than the syringes as they are easier to use. You can't see the needle go in with the pens so they are good if you are squemish.

nerdysal

ncmc wrote: »

Make sure your pharmasist orders you the pens rather than the syringes as they are easier to use. You can't see the needle go in with the pens so they are good if you are squemish.

Have to disagree with you there. When I started on Humira, there was only a needle and syringe and I was getting on ok with it. The nurse then told me about the pen and I was delighted as I thought it would be really easy. Not the case!!! It's so bloody painful and no matter what I done I always ended up with a big lump after it. I'm no longer on humira but if I was I would have switched back to the needle and syringe.

Everyone to their own, I suppose.

lip

I always get a lump n the site,nurse said it was normal.A few times it has leaked out,don't know what I was doing differently but it hasn't happened in ages.I don't think I could do the syringe,I prefer not to see the needle,but like you say,everyones different.

BrianJD

Hi

Hope every one is doing okay. I'm just wondering if anybody is afraid of Swine Flu. I'm currently on a weekly (Pen) dose of Humira and also take asacolon and i'm a bit worried about my immune system. My wife and I are due to go to Florida in 5 weeks time and the last thing i'd want is to catch it on the flight over. Is there anything I can do to help prevent it? Would wearing a mask on the flight look daft or freak others out on the plane? What will you do if you are due a holiday? Sorry for all the questions and thanks for any advise.

On a seperate note, I have had 4 sessions with a Bio Energist over the last 4 days. The same guy has been credited with helping Michael Flatley when he was unwell. Has anybody in this forum had any treatment from one of these guys and how do you felt it went?

The_Conductor

I'm on Imuran- and my wife is a type 1 diabetic with a compromised immune system too. I received a crate of medical theatre grade face masks from Hong Kong this morning- but haven't really thought about using them, at this point in time.

Stats are pointing at possibly as many as 5000-6000 deaths in the Irish republic, in the absence of timely innoculations, and there are big questions marks over the vaccination programme the government is proposing at present.

Yes, I'm worried, but life must go on.

Being in a plane with recycled air is a concern yes- but so too is being in a bus- or a public place such as a cinema.

Certain areas of China banned gatherings of more than 8 people when Bird Flu made the hop into the human population. Swine Flu is considered to be infinetely more communicable than Avian Influenza, but a lot less deadly.

The UK is already considering granting an additional 10 days sick leave to anyone who gets the flu- which to be honest is possibly the least of people's worries.

As someone using immune suppresants- I am probably going to get it, but given my age and health, I wouldn't consider myself in the 'at risk' group from the perspective of fatalities. Unless you suffer from bad respiratory conditions- you should be fine- though the prospects of a forthnight in bed to throw off a flu that you'd normally get rid of in a 2-3 days is not to be welcomed.........

lip

There are so many different viruses around,you can't live your life worrying about catching them or you'll drive yourself mad.I know the swine flu is highly contagious,but you could be shopping and be beside someone who has contracted it and not realised so go and enjoy your holiday.I have been on and off imuran for years,and now being on both humira nad imuran my immune system is very compromised,but I have to say it wouldn't prevent me from leading a normal life.I try not to worry about things like that,could be ran over by a bus crossing the road.Obviously,if you feel you would be more comfortable wearing a mask,go for it,who cares what others think.
Question,has anyone been granted a medical card on medical grounds?I am in the middle of applying again,been turned down 3 times in the past.Its going on months now,every time I send something in they request other info.We are over the income limit,but with childcare,mortgage,bills ect we're finding it a real struggle.I am in the doctors lately at least twice a month,and 1 of the kids will always be sick,plus the medication every month.Hopefully should be hearing next week what their decision is,not very confident though.

ncmc

lip wrote: »

There are so many different viruses around,you can't live your life worrying about catching them or you'll drive yourself mad.I know the swine flu is highly contagious,but you could be shopping and be beside someone who has contracted it and not realised so go and enjoy your holiday.I have been on and off imuran for years,and now being on both humira nad imuran my immune system is very compromised,but I have to say it wouldn't prevent me from leading a normal life.I try not to worry about things like that,could be ran over by a bus crossing the road.Obviously,if you feel you would be more comfortable wearing a mask,go for it,who cares what others think.
Question,has anyone been granted a medical card on medical grounds?I am in the middle of applying again,been turned down 3 times in the past.Its going on months now,every time I send something in they request other info.We are over the income limit,but with childcare,mortgage,bills ect we're finding it a real struggle.I am in the doctors lately at least twice a month,and 1 of the kids will always be sick,plus the medication every month.Hopefully should be hearing next week what their decision is,not very confident though.

Thank you for the reply (I'm Brian's wife) we are a little nervous about travelling when he is taking Humira, but you're right, you can't live in a bubble and if the forecast is correct, he'll be just as likely to get it here as anywhere else in the world in a couple of months.

As for the medical card, Brian has been turned down on several occasions for being over the income threashold. As have a lot of people posting on this thread. It is a travesty that Crohns isn't on the long term illness list, but I can't see that changing, especially since they will be probably cutting the medical cards after the Bord Snip report. There is a letter writing campaign on the Facebook group linked above.

Sorry that you are going through such a rough time at the moment. It's bad enough having such a debilitating desease without having to worry about how you are going to pay the doctor or the pharmasist.

nerdysal

Just want to remind everyone about the Letter Writing Campaign for crohn's to be included on the long term illness scheme:

http://www.ibdforlongtermillness.weebly.com

Email ibdcampaignforrights@gmail.com for more info!

The_Conductor

Swine Flu and IBD

Anyone concerned about Swine Flu can get more information from the NHS Direct website at www.nhsdirect.nhs.uk or by calling 0845 4647. Patients in Scotland can call NHS 24’s dedicated flu line on 08454 24 24 24. If you have flu-like symptoms after returning from Mexico or contact with a swine flu infected person you should stay at home and call your GP. for advice.

Patients on standard doses of immunosuppressant or anti-TNF therapy should not be exceptionally susceptible to Swine Flu, and are advised to continue with their treatment as the risk of active IBD and subsequent need for drugs such as steroids would carry a greater risk than that of contracting the infection. Anyone experiencing flu like symptoms should contact their GP. immediately stating that they are on an immunosuppressant.

Early doses of antiviral medicines such as Tamiflu are thought to be effective in treating people with Swine Flu. There is no known interaction between Tamiflu and standard IBD drugs, and it is not is not thought to have any harmful effects on IBD itself, so Tamiflu may be given on medical advice to IBD patients.

LegacyUser

Hi Brian,

I haven't had a bio-energy session, but believe they are very effective and know the guy you're talking about, have had other forms of energy healing. I believe in treatment of the body, mind and soul , have Crohn's too and looking at additional ways to treat. Some books -I recommend The Healing Code-dermot O'Connor and Louise Hay-How to heal your life.
Try not to worry about Swine Flu, it could be picked up anywhere, if wearing a mask makes you more comfortable then wear it, you probably will find a few others wearing one too on your flight. Hope this helps and good luck with the healing, by the way how do you feel after it?

nerdysal

This is short notice I know:

Ann Marie from the Letter Writing Campaign is going to be CRCFM (Castlebar) talking about our campaign at 11.30 this morning. You can listen @ www.crcfm.ie

00sully

been on asacolon for 7 years and imuran for 4. Happy to say that imuran has put me in remission since I started taking it - yes you get the sore joints etc.. (not too mention the osteoperosis from too much IV steroids in the past)

I can recommend long distance running to help ease the pain! yes its tough cuz you're tired all the time etc.. but build it up slowly and you wont regret it!!

nerdysal

if you missed the interview you can hear it on the podcasts @ www.crcfm.ie

nerdysal

Me again!!!!

Please sign the petition to get Crohn's & Ulcerative Colitis recognised as a Long Term Illness @ http://www.ipetitions.com/petition/ibdforlongtermillness/

It will only take 30 seconds!

BrianJD

Unregistered wrote: »

Hi Brian,

I haven't had a bio-energy session, but believe they are very effective and know the guy you're talking about, have had other forms of energy healing. I believe in treatment of the body, mind and soul , have Crohn's too and looking at additional ways to treat. Some books -I recommend The Healing Code-dermot O'Connor and Louise Hay-How to heal your life.
Try not to worry about Swine Flu, it could be picked up anywhere, if wearing a mask makes you more comfortable then wear it, you probably will find a few others wearing one too on your flight. Hope this helps and good luck with the healing, by the way how do you feel after it?

Thanks for the reply. Will definitely look at getting those books. I'm quite open to all treatments but did find it hard to really let go with this guy as he believes that Crohns is not a lifetime illness and by just changing some parts of my diet and the correct belief of mind that you can be cured from it. I'm just 4 weeks after a resection operation so i was never expecting to feel so much better after the treatment as I'm probably as healthy as I've been for a long time after the operation but I certainly felt different through the treatments. The most unusual thing was him being able to pull and push me without laying a hand on me and as soon as i went into the room for each treatment and he started to work on me, I felt the most relaxed as i've ever done.

It's really a matter of time to see what benifits can be got from it. Luckily a Husband and Wife friends of mine were trained by him (after he healed her completely from something doctors couldn't diagnose) so I will continue to get a top up session from them every few months

While i don't necessary believe everything he has said, I do believe alot of illnesses are brought on or even possibly helped by your attitude to it. I know it's a cliche but the more possitive you can be then the better things will turn out.

Thanks, keep well

LegacyUser

Hi Brian

I was talking to your wife while you were in hospital How are you feeling afterwards? I hope Mr. McCourt did a good job! I miss him lol!!

Did they continue your medication? It's been 3 months since my resection and I seem to be doing ok with no meds what so ever

BrianJD

Unregistered wrote: »

Hi Brian

I was talking to your wife while you were in hospital How are you feeling afterwards? I hope Mr. McCourt did a good job! I miss him lol!!

Did they continue your medication? It's been 3 months since my resection and I seem to be doing ok with no meds what so ever

Hi

Thankyou, I know my wife finds the people on this forum very helpful. I'm doing very well. I was lucky in so that when they opened me up they found no blockages, only adhesions and a bit of knotting so I actually have the small bowel still intact (bar the couple of feet they took in 2002). I got out of the hospital one week after the operation and feel great for it. Meeting Mr McCourt on Thursday for a checkup.

He really was great to deal with and very forgiving with his time. It makes everything much easier to deal with. I won't be meeting the medical team until next month but my understanding is that i will be kept on Bi Weekly doses on Humira and daily Asacolon despite the operation. Until I meet them i don't know what else but I'll def be left with those two..oh the joy

Was your operation via Pin Hole or were you opened up. If the latter, how is your scar. Was it painfull for long?

lip

Nerdysal,do you know the title of the podcast.Went into it and listened to a few but couldnt find it.
My friend is reiki trained and she has done a few sessions on me.Although I felt very relaxed and sleepy after I unfortunately didn't get any relief painwise.I also am open to anything,but sceptical at the same time.I would'nt come off my meds or anything and replace them with alternative meds.
Glad your'e feeling better Brian,your wife is a great support for you,don't think DH would join a forum like this.He is very understanding though T.G.

LegacyUser

BrianJD wrote: »

Hi

Thankyou, I know my wife finds the people on this forum very helpful. I'm doing very well. I was lucky in so that when they opened me up they found no blockages, only adhesions and a bit of knotting so I actually have the small bowel still intact (bar the couple of feet they took in 2002). I got out of the hospital one week after the operation and feel great for it. Meeting Mr McCourt on Thursday for a checkup.

He really was great to deal with and very forgiving with his time. It makes everything much easier to deal with. I won't be meeting the medical team until next month but my understanding is that i will be kept on Bi Weekly doses on Humira and daily Asacolon despite the operation. Until I meet them i don't know what else but I'll def be left with those two..oh the joy

Was your operation via Pin Hole or were you opened up. If the latter, how is your scar. Was it painfull for long?

That is great news I hope you are healing well! My scar is getting smaller every day! I would say about 1 cm above and below my belly button, if even! The marks from the staples are nearly gone I have 2 tiny little scars from the keyhols surgery then as well but you cant even see them I must say he is a far better surgeon that the one that did my appendix in Waterford! That scar is massive It was only painful for about 2days after the epidural stopped and it weaped for about two weeks also. I have been back to work nearly 2months with only 1 sick day and that was for a 24 hour vomiting bug I am only on Calcichew and Iron Tablets and the moment as Prof Shanahan said I dont need anything! So fingers crossed How is your scar doing? Did they reopen your old one or manage it through keyhole surgery?

nerdysal

lip wrote: »

Nerdysal,do you know the title of the podcast.Went into it and listened to a few but couldnt find it.
My friend is reiki trained and she has done a few sessions on me.Although I felt very relaxed and sleepy after I unfortunately didn't get any relief painwise.I also am open to anything,but sceptical at the same time.I would'nt come off my meds or anything and replace them with alternative meds.
Glad your'e feeling better Brian,your wife is a great support for you,don't think DH would join a forum like this.He is very understanding though T.G.

It may not have been put up yet. I'm not sure of the title. It will probably have crohn's or Ann Marie Gavin in the title. The next time I'm talking to her I'll ask her.

I tried reflexology once. Extremely relaxing. However, I only done 1 session and I'd say you would have to do a good few before you would feel the benefit of it.

LegacyUser

BrianJD wrote: »

Thanks for the reply. Will definitely look at getting those books. I'm quite open to all treatments but did find it hard to really let go with this guy as he believes that Crohns is not a lifetime illness and by just changing some parts of my diet and the correct belief of mind that you can be cured from it.

The Healing Code is about a guy who heals himself of MS, I think it's definitely worth a read it's a lot to do with positivity. I agree it's very important to continue with all treatments and continue medication. A lot of the time we forget how important relaxation is for healing the body, however you find that relaxation,make it part of your day every day Diet is something I am trying to figure out too.

"While i don't necessary believe everything he has said, I do believe alot of illnesses are brought on or even possibly helped by your attitude to it. I know it's a cliche but the more possitive you can be then the better things will turn out".

I agree with positivity (which sometimes can be a very hard place to get to when you are very ill).. and for me it is what gets me through the challenges. I hope you enjoy these books, they have affirmations that help you get to a positive place. And I'm so glad you have found something that relaxes you, reiki is something I am dying to try.

Keep well

LegacyUser

Sorry the QUOTE didn't work there for me but you get the idea

nerdysal

For anyone who is interested. The podcast of Ann Marie's interview is not being put up until Friday. The address is www.crcfm.ie

Don't forgot to support the campaign, visit www.ibdforlongtermillness.weebly.com

And sign the petition http://www.ipetitions.com/petition/ibdforlongtermillness/index.html

LegacyUser

nerdysal wrote: »

For anyone who is interested. The podcast of Ann Marie's interview is not being put up until Friday. The address is www.crcfm.ie

Don't forgot to support the campaign, visit www.ibdforlongtermillness.weebly.com

And sign the petition http://www.ipetitions.com/petition/ibdforlongtermillness/index.html

Petition signed and forwarded to many

Hope this helps!

nerdysal

You're a star! Thank you so so so much!!

gemima

Hi All,

These posts are great to read. Here's my story! Not really mine but here goes!

My Fiance was diagnosed with Crohns a few years ago. He had intestinal problems for years but nothing was ever found. Finally he was in so much pain he ended up in A & E and subsequently spent 2 weeks in hospital. His first night they told him he had appendicitis and had him prepared for surgery the next morning. Then they decided to hold off on the surgery because they thought he might not have appendicitis!! The next step was to do more tests but of course it took days for them to happen! He didn't eat for 4 days and still had no tests done. They fed him for 2 days and then had him fasting again. Finally he was diagnosed with Crohns!

He was taking steroids and Pentasa for a while. The steroids helped but as soon as he went off them he was in pain again. They were also hugely expensive!

About a year later he had flu like symptoms. Later in the week he developed pain on his right side. Couldn't sleep and couldn't get comfortable no matter what way he sat or lay. He's stubborn so wouldn't go to his gp until he was dying (my word)! He worked all through this. Worked, sleep at lunch, back to work, home at 6 and sleep til the next morning! All week! Went to his gp who sent him straight into A & E again. By the time he reached a & e he said he had never been in so much pain in his life and i saw it. He's a tough cookie and he was in tears!

He had scans etc.. and found out he had an abcess on his liver. Apparently this is a very very rare complication of Crohns and he was unlucky to have to suffer through it. Was in hospital for 4 weeks with this, the first 2 through which he could barely speak because of the pain he was in. But once he started to recover it was swift.

Anyway, now he gets flare ups i'd say once a month but they last approx 5-7 days each time. Each time they're worse. The only thing he's taking now is Pentasa. Everytime he goes to the specialist it's during a non flare up time so he doesn't say what's been happening and the specialist thinks all's ok! By the way, he's also has a colonoscopy and the scarring was severe but less severe than was expected.

Popcorn seems to be the only thing that affects him severely diet wise.

Sorry for the rant but i don't know what to do to help him. I try to be supportive but it's really getting him down and it's hard for both of us. He won't talk about it because he doesn't want to complain and neither of us have any helpful solutions!! The Omega 3 and Aloe Vera tips are definitely gonna be introduced by me to see if they help!

Are there no Crohn's specialists in this country? Besides the gastro consultants in the hospitals i mean? No one that deals specifically with CD?? Any advice would be much appreciated.

nerdysal

Hi Gemima,

You and your husband have really been through the mill! That abcess sounds horrific. I know how it feels to get a rare complication from crohn's. I got pancreatitis caused by the steroids and my parents were told that it was 50/50 whether I would survive the night! Not easy for a then 15 year old!

My consultant, Prof O' Donoghue has done alot of research into crohn's disease. However, he's know retired from the HSE so I'll be getting a new consultant. I think he is still operating his private practice though.

You really should try and get your husband to keep a diary of his symptoms to show to his consultant. He can't go on letting the crohn's develop. That's what I did... everytime I went for an appointment I pretended everything was rosy until I eventually had to get 1 foot of my small intestine removed!!!

nerdysal

You can follow the progress of the IBD for Long Term Illness Scheme campaign on Twitter:

http://twitter.com/ibdforltischeme

Don't forget to sign the petition (see below!)

lip

Hi Gemima,your fiancee has been through it alright.Don't know what part of the country your'e in,but I used to attend Dr.Lennon in the Mater who I found excellent and really up to date with the new treatments.I now attend Dr.O'Connor,hes in Tallaght and Naas and is excellent also.Not sure if there are any doctors who just deal with Crohns,never heard of any.As for you fiancee not disclosing everything to his doctor,he really needs to.Like nerdysal said,get him to keep a diary of his symptoms,what he eats,drinks,if there is pain,when,how long for,ect.If he won't,you should for him and insist you attend his next app and give it to the doctor.It will only get worse if untreated.Good luck,hope he gets sorted soon.