Crohn's Disease

LegacyUser

Hoping to get a slot on liveline today...a lot if us have phoned in to highlight the need for crohn's and colitis on the Longterm illness plan. Please phone them now and get your story on....the more people the better..God knows we all really need this:)

degrassinoel

LucyBliss wrote: »

degrassinoel, do you think maybe you might be a bit run down? Or need some multivitamins or something? Because I had the same problem for June and most of July. I put it down to the weather and the whole 'coming down' after my grandmother's funeral and just tiredness in general. I couldn't get out of bed some mornings and if I had things to do, I had to chose one, go out and do it, then come home and take a nap. If I had enough energy to walk the dogs, that was a good day.
Turns out I had low B12. I found out after getting a blood test at my outpatients appointment and my GP said to come in and get some injections. I'm glad I did because I have more energy and last week was getting up at 6.30am to walk the dogs to avoid the showers. The dogs, who were used to napping with me until all hours, didn't know what hit them!

So just a thought and I hope you feel better soon.

could be a defieciency somewere alright, I got the b12 injections last year, around the same time but they didnt do a whole lot of good, i actually thought it was a placebo injection the doctor was giving me, because he also prescribed me a book..(the secret, and its a load of airyfairy wishywashy tripe imo) lol i think he thought i was just depressed, maybe he was right but in my personal opinion its a catch22 mix of both.
bloods were fine the last time i was checked, high sugar, standard levels on everything else for a crohn's disease patient.
Any suggestions on multivitamins that dont make you constipated?

Cheers for the thought, means a lot
and lol @ poor dogs

The_Conductor

longetermillness wrote: »

Hoping to get a slot on liveline today...a lot if us have phoned in to highlight the need for crohn's and colitis on the Longterm illness plan. Please phone them now and get your story on....the more people the better..God knows we all really need this:)

I didn't notice this earlier (Boards is blocked in work). I really hope that Crohn's and Colitis are added to the LTI scheme- the EUR120 a month really is a big deal- when you're too ill to make the most of your potential......

I have to see if I can find a podcast of the show.......

BrianJD

LucyBliss wrote: »

degrassinoel, do you think maybe you might be a bit run down? Or need some multivitamins or something? Because I had the same problem for June and most of July. I put it down to the weather and the whole 'coming down' after my grandmother's funeral and just tiredness in general. I couldn't get out of bed some mornings and if I had things to do, I had to chose one, go out and do it, then come home and take a nap. If I had enough energy to walk the dogs, that was a good day.
Turns out I had low B12. I found out after getting a blood test at my outpatients appointment and my GP said to come in and get some injections. I'm glad I did because I have more energy and last week was getting up at 6.30am to walk the dogs to avoid the showers. The dogs, who were used to napping with me until all hours, didn't know what hit them!

So just a thought and I hope you feel better soon.

So laughed out loud at your dogs predicament. My dog has trained her self to go from afternoon nap to roaming fields in 6.23 seconds cause she never knows what Dads gonna do. On a side note, i'm really struggling at the moment. Sometimes this thing makes you just so fed up and the only solution is to hide under the quilt.

lip

Hi.Degrassinoel,I had to have B12 injections every 3 months for years,so maybe you need to get your bloods done again.Seems to be ok for the past year or so.But had bloods done 2 weeks ago and my blood count is 8,which is low apparently.Was prescribed iron tablets,but i could never tolerate them and still cant.Think I'm going to have to get an iron injection.
GP wants me to go back on steroids again,really don't want to,but if I have to I will.He wasn't sure if I could as I'm on Humira and imuran,so I'm waiting for consultant to contact my GP.
Wasn't near a radio today so didn't hear if it was on.Will try find podcast.Emailed letter about the LTI scheme to loads of politicians and newspapers.The more publicity the better.

LegacyUser

Having had a break of about 2 months maximum in 3 years from crohn's, was having an even worse time of it with sudden awful joint pain, which id never had before. Was dying to start infliximab for some relief when out of nowhere I had crippling chest pains and was diagnosed with a pulmonary embolism!! Cannot believe it!! Am trying to stay positive so as not to upset my family as it was all a bit scary for a while. I know i'm very lucky but at the same time i'm absolutely devastated. I'm only 23! Has this ever happened to anyone else? The pain is nearly the worst iv ever had, bar gallstones.

Rachelle

Hi all,

shane- in answer to your question there are not many side effect associated with Pentasa. I was on them for a while and had zero side effects whatsoever.

Im just coming out of a flare myself - it be must be the feckin weather has us all feeling crap!
Have decided i am never going to take evil prednisone again - the side effects are awful and i got some new ones this time too.

Have been due to start humira since june but caught a couple of chest infections so its been pushed to August. Anyone any experience of humira?

colsers22

Hi, I've been on Humira for nearly a year now.
The drug itself is easy enough to take. I use the pens and find them ok. I haven't had any problems with administering the drug or injection site issues.
The only side effects I can honestly say I have experiecned are fatigue (this was awful for the first 5 months), sore feet and a couple of really bad sinus infections.
Overall the drug has changed my life and I would have no problem in recommending it for moderate crohn's. It's expensive though, I have to pay 120 a month on the DPS. I know I am getting a huge discount, but still, I shouldn't have to pay this out every month for probably the rest of my life!
Would be interested in hearing how you get on with the drug.

degrassinoel

just on the pentasa thing, i had an adverse reaction in the form of a massive flare up after a few days of taking it. had to be taken off it and put back on steroids for about a month.

lip

Hi,just want to highlight the Long Term Illness Scheme again.A few people,including myself got email from Mary Harney to say there will be no review of LTI,so we may all get emailing or writing to your local politicians and put pressure on them...
On a personal note,back on steroids again.Feel like crap,thought I'd have gotten longer than 5 months out of the op:( On antibiotics too for cough.Had Pneumonia in May,so hopefully I don't get that again.Immune system is completely shot.
Has anyone had iron injections?My blood count is very low and just can't tolerate tablets so think I'll have to have the injection.I've heard its really sore,but how sore is really sore???Sorer than the B12???You'd think I'd be used to injections by now!!!!!!!

bluebell1

Have had an iron infusion earlier in the year as i can't tolerate tabs either. i found it grand to be honest, no pain, just like having blood taken except they are giving it to you. no weird sensation or anything and it can last up to twelve months, so it may be worth a little discomfort....

CathyMoran

Feel like an honorary member of this thread. Hubby smccarrick has crohns - he has dvts again and he may have pneumonia...

I had the iron while pregnant with our son, it is not that bad honest...it was only hard on me as my veins are bad.

Ush1

I'm responding well to the Imuran and just came off the steroids, hopefully everything stays good.

mad_fish

Lip - I got an iron infusion there about 3 months ago and it was brill, no hassle and no feeling weird, I had the same problems with iron tablets where my stomach just could'nt handle them and saw no problems with the infusions.

Rachelle - The Humira and associated side effects really seem to vary widely depending on the person, my dad (has crohns 20+ years) was put on it and had a very bad reaction, liver function went skew and felt terrible, whereas I (have crohns about 3 years) was prescribed it about 4 months ago and I've never felt better, I would talk through the common side effects pretty vigourosly with your doc so you know what to look for.

how often have people had to get B12 injections? Have they made a big difference to energy levels etc?

The_Conductor

The frequency of the B12 injections varies from person to person. The injections come in two strengths- and some people get the lower strength one weekly, while others might get the higher strength one monthly. If you're not using the B12 (Cytamen or Neocytamen), its entirely possible that the frequency between injections may vary even more.

I tend to get the Neocytamen injections once a month- I feel crap for a day or two after the injection (I'm allergic to the suspension itself- which is a cyano compound)- but around day 3 after the injection you definitely notice a big boost.

If you're constantly feeling run down- I'd seriously advise asking your gastroenterologist to order a full blood workup.

Shane

smithy1981

Hello all,
I was diagnosed with crohn's in may and im back in hospital for the 3rd time since. Been trying to read through this thread today but to be honest i think im getting more confused Have an appointment with my consultant next week so hopefully ill learn more.
I hadn't even heard of crohn's before may, so it was a surprise to find such a massive thread here on boards. I'm quite glad i did tho as ive plenty of reading material for the remainder of my stay.
Anyway just wanted to pop in and say hello. All the best,

jamie

Rachelle

Hi Guys,

thanks for the info re:humira. Ive actually had to put it off twice due to chest infections so fingers crossed ill start at end of august.
I've ran through the side effects with the ibd team in tallaght so am aware of them but to be honest i dont like to dwell on them! Sometimes i prefer to be ignorant (i know thats not advisable at all but when i heard words like lymphona mentioned etc it just causes me to panic!) Fingers crossed i will be one of the lucky ones that isnt affected by the side effects.
Am on imuran and i have tolerated them well, although they eventually began to los effectiveness with the crohns

Re: B12. These are my life safer. Hand on heart i wouldnt get through the working week without these. I was on weekly injections for best part of a year but am now back to one a month. They give me a much needed boost everytime

SMcCarrick -how are you getting on with Pentasa?

CathyMoran

Rachelle wrote: »

SMcCarrick -how are you getting on with Pentasa?

Shane is taking it easy as he has multiple blood clots - he is not on the Pentasa at the moment. He is on inohep and warfarin for the clots. Am very worried about him.

Rachelle

Hi Cathy

So sorry to hear that. I know from previous posts that you have both been through the mill before and i know that with your strength you both will come through this latest illness. I'lll keep everything crossed that he comes through this as quickly and as easily as possible. Keep strong girl.

Ciara D

Hi Cathy

How is Shane?

Ciara D

Hi Jamie,

How are you getting on?

It does all get better. I have Crohns 10 years plus and have had surgery 5 years ago.

Things do settle down.

This page is great and there are one/ two good ones aswell, if you want a link pm me and I will send it to you

C

Ciara D

longetermillness wrote: »

Hoping to get a slot on liveline today...a lot if us have phoned in to highlight the need for crohn's and colitis on the Longterm illness plan. Please phone them now and get your story on....the more people the better..God knows we all really need this:)

If you want the link to a similar interview that was done on the TV in relation to the Long Term Illness plan, please pm me and I will send the link to you. I don't know whether it will let me post an external link on boards

CathyMoran

He is still on the warferin and inohep - he has a scan tomorrow - the clots are above his knee in his leg and he has them in his arm too which is the worry.

Ciara D

CathyMoran wrote: »

He is still on the warferin and inohep - he has a scan tomorrow - the clots are above his knee in his leg and he has them in his arm too which is the worry.

Oh no let me know.
Hope things are going well with the new addition

Ill say a prayer and fingers crossed everything will be ok

Ciara

CathyMoran

Ciara D wrote: »

Oh no let me know.
Hope things are going well with the new addition

Ill say a prayer and fingers crossed everything will be ok

Ciara

Our son is great - he looks so like his daddy He is talking away at the moment - we are thinking of trying for just one more...

Ciara D

Ah good, glad all is going well.

nerdysal

Hey Guys,

Still fighting this Long Term Illness Scheme issue if anyone is interested in writing a letter/email to Mary Harney or their local TD. www.ibdforlongtermillness.weebly.com or signing the petition which you can access from this site.

Also, I was in the Sunday Business Post magazine yesterday talking about Crohn's & LTI scheme if you're interested in having a read: http://www.thepost.ie/post/pages/p/story.aspx-qqqt=AGENDA-qqqs=agenda-qqqid=51019-qqqx=1.asp

Cathy- Sorry to hear Shane's not well, hope he gets better soon!!

Sara

HigginsJ

hi all i have been on treatment for the last 4 months. Not seeing any improvement. Have been on entocort, puri nethol and pentasa for the last 2 months. I am wondering if anyone has suffered from very high temperatures. I have had 3 days where i have ran a very high temp and sweats. Any ideas?

In relation to food my specialist said that diet does not play a part. However i had 2 serious attacks, one the day after eating an apple and the other the day after eating some peanuts. Its frusrating having no info from doctors about this sort of thing.

The_Conductor

HigginsJ wrote: »

hi all i have been on treatment for the last 4 months. Not seeing any improvement. Have been on entocort, puri nethol and pentasa for the last 2 months. I am wondering if anyone has suffered from very high temperatures. I have had 3 days where i have ran a very high temp and sweats. Any ideas?

In relation to food my specialist said that diet does not play a part. However i had 2 serious attacks, one the day after eating an apple and the other the day after eating some peanuts. Its frusrating having no info from doctors about this sort of thing.

Personally I've found some foods to be triggers for Crohn's attacks- in my case its pretty much anything with sweetcorn in it (not least Cornflakes and other breakfast cereals). I think the trigger foods can vary from person to person- it really is the case that you have to learn to recognise what foods are a problem for you- and then avoid them. The other part of this- is if you're in good health and feeling well- often you may manage to tolerate these trigger foods- when if you're run down at all- they would trigger an attack........

With respect of having a temperature- it is one of the classic sympthoms of Crohns- and is something you need to discuss with your consultant. Its pointless looking for advice on the internet about how to manage it- you'll get folk telling you to take panadol or any manner of other things- which long term could do more damage than good. Talk to your consultant.

I was on Pentasa for a few years- and found it did have a beneficial effect at keeping the intervals between attacks to manageable levels. Unfortunately its effects eventually wore off for me- and I went down other roads- most recently the Imuran road- which has imploded spectacularly for me.

There are many possible means of treating Crohn's these days that weren't readily available in the not so distant past. If Pentasa is not working for you- ask your consultant what the alternates are- and what the potential positives and negatives to the various treatments may be.

Shane

HigginsJ

yea going to see my consultant tomorrow so touch wood get something new. lots of backpain and one or two other issues (aside from the obvious abdominal pain)