Crohn's Disease

lizabbey7

lizabbey7 wrote: »

having a bit of crap time of it since easter, chrons is still settled but not sure how long it will last, along with aches & pains my lungs & lymph glands are now inflamed I have x-rays, bloods, ct scan now I am going for a broncoscopy and they will take biopsies, has anyone been through this as a result of humirs treatment??? I know I have no patience, its just no one seems to have any answers, I was taken off the humira as they do feel it is related

Hi geor,

thank you so much its always good to get some reassurance, I suppose when everything is going good you forget the bad times...hopefully thursday wil bring some answers only off the humira so prob will get worse before getting better because i think it was actually masking the problem

geor

i know, can be kinda scary coming off when all is going fairly well, Still you can always go back on if needed. Use the time to try out some stuff like eliminating dairy or wheat and see how you get on... I can recommend Udo's Super 8 probiotics, I get these in Nourish in the GPO arcade in Dublin. They also have some good ginger soother drinks.

Might be worth trying a few things and see what works for you. i was initially quite bad for a month or so after coming off imuran, but then bit by bit adjusted my diet and have been off it over a year now and am getting by fine. have some bad days, but used to get them on imuran anyhow...

There's lots of interesting research being done about probiotics at the moment...

MORISH

Hiya Goer, and lizabbey7

I havent been on boards for about a year, i started on humira in nov 2008, came off it in nov 2009 myself, as my consultant had said we would see how things went after a year but after only 6 weeks off humira i felt my chrons was becoming unsettled again and i was getting married in april this year so i wasnt willing to risk a flare up so went back on my humira, i am on it every 14days.

Libbey7 i am concerned to hear that your having such serious side effects, especially the enlarged lymph glands, just before i got married i had enlarged lymph nodes behind my ears but as i was busy i didn't seek attention for them, then i got pregnant(10wk now) amd was with my GP and she said it was most likely an ear,nose,throat infection but i didnt have any symptoms. the lymph glands seem to have gone again but i must keep a watchful eye on it, i am staying on humira for first 2 trimesters of pregnancy so fingers crossed they wont become enlarged again.

goer like you i had to come off Imuran due to awful upper gastric pain and it apeared to make my systemic chrons worse.

Lizabbey7 let us know what happens cos humira is still only in its infancy in its use for chron's

lizabbey7

MORISH wrote: »

Hiya Goer, and lizabbey7

Libbey7 i am concerned to hear that your having such serious side effects, especially the enlarged lymph glands, just before i got married i had enlarged lymph nodes behind my ears but as i was busy i didn't seek attention for them, then i got pregnant(10wk now) amd was with my GP and she said it was most likely an ear,nose,throat infection but i didnt have any symptoms. the lymph glands seem to have gone again but i must keep a watchful eye on it, i am staying on humira for first 2 trimesters of pregnancy so fingers crossed they wont become enlarged again.

goer like you i had to come off Imuran due to awful upper gastric pain and it apeared to make my systemic chrons worse.

Lizabbey7 let us know what happens cos humira is still only in its infancy in its use for chron's

hi morish, congrautlations on your pregnancy, I myself am getting married in october and this hanging over my head is not what I want to be concentrating on, I was on humira every two weeks up until last week, when I first felt ill I went to my gp and I was told I had a viral infection and its still ongoing, the pains esp in the chest area is quite bad, I am still on imuren and feel i should be coming off that as well.

MORISH

Hi Lizabbey7

Congrats on your upcoming wedding its a really great day, and i can only imagin how furstrated you must feel with trying to get on with life and now to not be feeling well. I have not heard of anyone having been diagnoised with Lupus as a result of humira, but it is a biologic agent and it does have some very rare and unusual side effects from what i know, its just that for most people the side effects never happen, i'm sure the doctors did the right thing in stopping the humira. Hopefully when you get your biopsies & xrays done they can give you more answers.

I know you must be freaking out, i know i would if i was having the side effects you mentioned.Unfortunatly there is not much you can do until they confirm whats going on, hopefully if the humira is stopped then the effects might wear off in time, there are other options in the mamagement of the chron's although i know i feel that humira is my lifesaver. Are they giing you anything for the pain just so you can get by until they do the investigations?

Richard Dower

lizabbey7 wrote: »

having a bit of crap time of it since easter, chrons is still settled but not sure how long it will last, along with aches & pains my lungs & lymph glands are now inflamed I have x-rays, bloods, ct scan now I am going for a broncoscopy and they will take biopsies, has anyone been through this as a result of humirs treatment??? I know I have no patience, its just no one seems to have any answers, I was taken off the humira as they do feel it is related

Hmmm....not suffered any ill effects from Humira (thus far), my consultant did tell me to be very careful and come straight in if i feel anything is not right. I get my fourth dose tomorrow (1 pen - 40mg), your symptoms need to be checked out.

The_Conductor

I've been off Imuran for over 6 months now- and still have a critically low white cell count. I had a series of transfusions in St. Vincents (for anaemia more so than for the white cell count)- and have managed to get my iron back to almost 9.5, white cell count has increased to 2.1 (I know its less than half what it should be- but this is from a total collapse).

How long does it normally take for white cell counts to recover once you come off Imuran normally? Has anyone else here suddenly developed a hyper sensetivity to Imuran- and if so- how did your consultant subsequently treat you?

Due back to the gastrointestinal consultant in July, and to the consultant haematologist before then. Curious as to what they intend to do.......

lizabbey7

oh ive had xray, ct scan, bloods etc all ongoing next up is broncoscopy tomorrow, the lungs and lymphs are inflamed so they are hoping this will tell why....as I am only off the humira if it is related to that its going to take time for everything to fall back into place but to be honest the chrons is the least of my worries

The_Conductor

http://www.irishtimes.com/newspaper/health/2010/0615/1224272509875.html

Living with bowel disease 'as bad' as life with cancer

Public forum calls for improvements in quality of life for people suffering from inflammatory bowel condition, writes MICHELLE McDONAGH

THE QUALITY of life of patients with inflammatory bowel disease (IBD) can, at times, be as bad as that of cancer patients, a public forum held in Cork to coincide with World Digestive Health Day heard last night.

Professor of clinical gastroenterology at Barts and the London School of Medicine and Dentistry, David Rampton, said, however, that there were ways in which doctors and patients themselves could address some of the causes of poor quality of life in IBD.

IBD comprises Crohn’s disease and ulcerative colitis – two serious, chronic digestive conditions that affect five million people worldwide. The diseases directly affect the digestive system and cause intestinal tissue to become inflamed, form sores and bleed easily. There is no cure, no known cause, and little public understanding of the pain and chronic suffering with which IBD patients cope every day of their lives, the forum heard.

“There are some factors we can’t change like the patient’s diagnosis, age, gender and personality, but there are other causes of poor quality of life in patients with IBD that can be addressed such as fatigue, anaemia, drug side effects and quality of medical treatment.

“These are areas which tend to be neglected in a busy hospital clinic where we are trying to make the inflammation in the gut better,” explained Prof Rampton.

He highlighted how important it was for IBD patients to be seen by a gastroenterologist who understands the disease rather than a generalist.

In terms of drug treatment, he said studies had shown that patients preferred to take their medication in tablet form rather than as a suppository or enema and preferred taking just one tablet a day.

“About half of all IBD patients have anaemia, and studies have shown that if you treat anaemia with simple iron tablets, not only does the anaemia get better but the patient’s overall quality of life improves.

“Another common association with IBD are mood abnormalities such as depression, anxiety and stress problems. If their doctor can address these problems with medication, therapy or counselling, it can greatly impact quality of life,” he said.

Chairman of the Alimentary Pharmabiotic Centre (APC) at University College Cork, Prof Eamon Quigley, said one of the new goals for treatment for chronic diseases like IBD was improving quality of life, a parameter that had been largely ignored in the past.

“IBD commonly occurs during a time of life when people are active, they are still in school, going to college, or having a family, so quality of life is extremely important.

“How symptoms impact on life varies enormously from one patient to another depending on their work, family, education and other commitments,” he said. “When treating patients, we should look at treatments that restore quality of life as much as possible and this requires a multidisciplinary approach to management.”

kildareash

smccarrick wrote: »

I've been off Imuran for over 6 months now- and still have a critically low white cell count. I had a series of transfusions in St. Vincents (for anaemia more so than for the white cell count)- and have managed to get my iron back to almost 9.5, white cell count has increased to 2.1 (I know its less than half what it should be- but this is from a total collapse).

How long does it normally take for white cell counts to recover once you come off Imuran normally? Has anyone else here suddenly developed a hyper sensetivity to Imuran- and if so- how did your consultant subsequently treat you?

Due back to the gastrointestinal consultant in July, and to the consultant haematologist before then. Curious as to what they intend to do.......

Hi Smccarrick,

My OH developed this hyper sensitivity to Imuran a couple of months ago. Before he had surgery to remove his large bowel, none of the meds worked, so it was kind of ironic that the imuran killed of all his blood cells this time.

He had been on imuran since last December. He was hospitalised in April because his bloods were critically low. (WBC were so low that they weren't even registering)

He had three or four units of blood when he was admitted to hospital and they stopped the imuran once they had ruled out an internal bleed.

After a day or two his white blood cells started to rise, but then his red blood cells dropped again so they decided to do a bone marrow test just to rule out anything else.

Finally, after 10 days in hospital, they decided to give him the booster injections. He was on these for the guts of a week.
It was about 3-4 days before things started to come right with the injections, and about another week before his white cells were high enough that he didn't need to be in isolation.
I think it was about a week or two before his immune system returned to "normal".

Sorry, I can't be more specific with the timeline, but he's been through so much that some of it is still a blur. That's a general sweep of what happened. If you have any other questions, just shout.

We were never told when he was leaving hospital that he should have regular blood tests.
They've started him on a very small dose of methotrexate, 5mg every two weeks and he's had regular blood tests since he started on it, but everything seems to be ok so far.
He's come off the flaygly and hopefully within the next few months he will be off the steriods.
He'd like to be off all the medication, as the surgical team doesn't feel that he needs to be on it.
So maybe this slow transition easing his body off the medication will work out.

LucyBliss

kildareash, your OH has really been through the ringer! Reading all that makes me really appreciate that I've never had any problems being on Immuran.

In other news, I have to ring the hospital tomorrow about going for a bone density scan because of all the steroids I've been on. Hopefully they won't find anything badly amiss. I can only hope that despite everything, I've inherited a fraction of my late grandmother's adamantium-esque bone strength!

LegacyUser

Hi,

I just have a quick question about Picolax...I took for my last colonoscopy but am due for a colonoscopy again but with a different hospital...they say to take clean prep. Now i have heard that this stuff is pretty horrible...couldn't I just go ahead and take the picolax again?
I found that grand to take.
Thanks

kildareash

LucyBliss wrote: »

kildareash, your OH has really been through the ringer! Reading all that makes me really appreciate that I've never had any problems being on Immuran.

Thanks Lucybliss, he's been through alot alright in a very short space of time, but so has everyone else on here too.
Thankfully, he's coming through the other side now.

Fingers crossed your bone density scan is ok

Richard Dower

I'm still doing ok, steroids gone from the body at this stage....you can feel that they've flushed out of you, you definately feel different. Reducing other meds all the time, i'm off all the Benzo's now....didn't feel any withdrawl. Consulant appointment in September.

Hopefully it was a 6 week flare-up and things settle now.

lizabbey7

sometimes it does feel like god when are things going to get better.....i am off humira & imuren, I was having side effects from the imuren I think, still now 100% and to top it off they have confirmed yesterday that I have TB so I am off all chrons treatrment until the 6mths of TB treatment is up....so sick of tests & bloods...sorry there is my rant

CathyMoran

lizabbey7 wrote: »

sometimes it does feel like god when are things going to get better.....i am off humira & imuren, I was having side effects from the imuren I think, still now 100% and to top it off they have confirmed yesterday that I have TB so I am off all chrons treatrment until the 6mths of TB treatment is up....so sick of tests & bloods...sorry there is my rant

Hugs.

My husband's crohns is active at the moment, he has an appointment shortly so will see what they suggest.

Richard Dower

lizabbey7 wrote: »

sometimes it does feel like god when are things going to get better.....i am off humira & imuren, I was having side effects from the imuren I think, still now 100% and to top it off they have confirmed yesterday that I have TB so I am off all chrons treatrment until the 6mths of TB treatment is up....so sick of tests & bloods...sorry there is my rant

So'k...rant away sweetie, how did you get TB?....was it due to the Humira?, hospital aquired?....TB is no joke

Ush1

I'm back on steroids and started on Imuran. Also doubled my prescription of Asacolon. Steroids haven't been as powerful this time although I'm on less than before, just waiting for the Imuran to kick now after a couple of weeks.

LegacyUser

lizabbey7 wrote: »

Hi geor,

thank you so much its always good to get some reassurance, I suppose when everything is going good you forget the bad times...hopefully thursday wil bring some answers only off the humira so prob will get worse before getting better because i think it was actually masking the problem

hi i have crohns about 7 years now was given all types of tablets and noting seem to give any relief so i stop taking all tabs and found i was the same as i was on them,i found a probiotic tablet called erce flora duo,and they have change my life, no pains everything working normal i wake up every morning with a smile on my face its like i dont have crohns, so i would say try them with what your on now i wouldn't advise going off any tabs.. my situation was different.hope this helps you in some way

geor

After all I have been through in the past few years, all I can say is I would highly recommend taking a good quality probiotic....the difference for me has been amazing.....

The problems with most are:

1. They do not guarantee amount of bacteria only at time of packaging (they could all be dead by the time you take them)
2. Usually only contain a small bit of the desired bacteria and the rest are fillers
3. They are not shelf stable and anything that has not been refrigerated from the shipping point and in the store are not worth taking.
4. There should not be more than one strain per pill or in the same bottle. Bacteria are competitive organisms.


The truth of the matter is there is no such thing as a cheap Probiotic the good one's you do have to pay for. An easy way to spot them is they are usually kept in the refrigerator and usually are in dark glass bottles.

Also it can take a long time to build them up and generally we need to take them in large doses..

There are lots of good books on probiotics,Natasha trenevs 'natures internal healers' , also Jini Patel's 'Listen to your gut'

Personally, I reckon my problems were caused mainly by diet, from the time I was a kid I have ate a lot of sugary foods, meats, dairy, starchy carbs....I think the lack of good fruit and vegetables in my diet along with other factors may have caused an imbalance in my intestinal flora.

I am doing better than ever at the moment:), off all meds, still occasional cramping depending on what I eat, but generally good. Don't get me wrong, it's been a very tough and the changes have been very gradual, but when I look at where I was to to where I am now...I feel I have come a long way...

lip

Hi all.Been a while since I posted again.Been about 5 1/2 months since my op.Was feeling great apart from tiredness until last Sunday.Been getting awful cramps again.GP says it the adhesions again,I'm not convinced.Hope its just a blip.Taking buscopan and tradol again every day.Luckily I'm on hols from work til end of August.Hopefully I'll get an app with consultant soon.
Was off fags for 7 weeks too,and stupidly went back on them.Raging with myself,but got more patches,so starting again tomorrow.
Hope everyones doing well.

Stephen P

Three years on from my first post on this thread it appears my Crohns is stating to rear it's ugly head!
Over the last year I'd say I've been getting pain more frequent along with other symtoms, blood in stools etc...
I had a colonoscopy last year and they found ulcers on my colon. They decided to keep an eye on me with appointments every 6 months and no medication. I had an appointment yesterday in James. Dr. Keeling was there with another doctor, after a chat about how I am it was decided to put me back on Pentasa. I was upset and disappointed that it appears the Crohns is coming back
To start with I'm on 2x500mg twice a day for three weeks then 2x500mg three times a day. I've started back on them today. The price of them is unreal €120!! :eek: :mad:
This morning in work I started to get very bad pains so had to come home. It's a coincidence after being at the hospital yesterday.

Can anyone tell me if there's any side effects with taking Pentasa? When I first took them it was 12 years ago and forget if I had any side effects (weight gain/loss etc...)
I hope I'm only on them for a short time. I'm back in James in 6 months to see how I'm getting on.

Stephen P wrote: »

Hi,

I suffer with Crohn's disease and was wondering who else on boards has experience with Crohn's?
I was diagnosed in 1997 when I was 16. Suffered very badly with pain and had numerous tests before it was finally diagnosed. Had an operation in 1998 to remove the infected part of the colon. I've been 100% since the operation. I had a Endoscopy examination about 3 weeks ago and tests came back clear. There's currently no trace of Crohn's in my body (Thank You God!), but there is a chance it could come back. I've been off my medication since August 2005 and have had no ill effects.
Is there any support group in the Dublin area for sufferer's of Crohn's?

watsgone

Hey all,

Bit of a off topis crohns thing,
its acting up again so I am am home layed up, very tender from a number of abcesses.
While I am sitting here between meds and fluids, I would like to get a tatoo on my foot or ankle.

Anyone with crohns get a tat, I obviously cant get one at the moment but what has been of getting one

LegacyUser

Hi all,
Managed to be relatively symptom free for max 6 months in the last 3 years, came off entocort and now its back with a bang! In relation to the above post I am also thinking of getting a tattoo and am wondering would it affect treatment etc? Heard rumours that it does but could just be chinese whispers. Also this new flare has left me with the most awful joint pain and im finding it painful nearly to move, does anyone know are there any supplements etc u can take to help? Waiting to start infliximab at james but dont know much about it. Humira didn't work for me does anyone think this has a chance?

Sorry for long post

lip

Hi,about tattoos,never heard anything about Crohns and having tattoos,I do know my friend has loads of them and she has Crohns.
Sheesy,I was the opposite to you,Remicade failed and I was put on Humira.Fingers crossed it will work for you.If you have any questions about Remicade just ask-someone will answer it for you.

The_Conductor

I wouldn't worry about tattoos at all (other than the usual precautions- using a reputable parlour that has cleaned art needles and is certified). I've never heard of tattoos being an issue for Crohn's sufferers previously.

Have a 6 month checkup tomorrow- am after developing a worrying surgical hernia- so may need repair work on top of everything else

Hope everyone is keeping well.

Shane

LucyBliss

Best of luck at the check up tomorrow, Shane.

And good thoughts to everyone who is at the mercy of this damn disease at the moment.

bossdon

Ive been on Infliximab for the last year for UC but I am now considering traveling to Australia for a year. Has anyone any experience with getting treatment while abroad. Any advice would be appreciated.

degrassinoel

just signing in,

shattered tired the last few weeks, think its a combo of the humid weather and crohn's, eating the crappy food i have to eat, and the general stress of life getting to me, i just cant seem to shake the tiredness at all.

not on any medication (for crohn's) but i know i cant keep going on like this, its destroying me. sleeping 8 hours just doesnt work anymore, am cranky with everyone, annoyed with myself and bleh.. losing interest in personal hygene even.
maybe its just the summertime blues hitting especially hard this year.
Anyways, good to see the regular posters posting

LucyBliss

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.