Crohn's Disease

livedadream

very true, i must try the fentimans cola, i just need a day off from work just in case before i do.

im normally grand my best friend is super understanding, (it took her a while but she went to london on summer and i was a nice normal cubby girl before she left and skeletal when she came home so i think that kinda drove it home to her that i wasnt just on a strange diet or a hypochondriac) so she plans dinner  (i cook shes hopeless) in her house for new years so I dont have to worry about if im sick or not i can go anyway...
people look at me and see im a relatively strong girl, i run marathons but i can get so sick so quickly and power though what would ruin most people that they think im fine, i know its the short end of the chronic illness stick, but a big dirty burger and cold can of coke would make me sooooo satisfied right now.
other than that a few turkey sandwiches will see me though!

MsGiggles

Guys I need some help. I have a colonoscopy today at 1. I took the prep last night and had an awful time I was vomiting and had severe pain and cramps. I was then up all night on the loo. Was all watery and clear all night and then this morning I am passing residue. I am actually roaring here thinking they won't be able to do the colonoscopy.

The_Conductor

MsGiggles wrote: »

Guys I need some help. I have a colonoscopy today at 1. I took the prep last night and had an awful time I was vomiting and had severe pain and cramps. I was then up all night on the loo. Was all watery and clear all night and then this morning I am passing residue. I am actually roaring here thinking they won't be able to do the colonoscopy.

Explain what happened- they can do a two stage scope at the hospital- to compensate (but to be totally honest- what you're describing isn't all that unusual- and they may just go straight ahead).

Do tell them though- as it'll give them a headsup on narrowings/strictures etc etc

Best of good luck today!

Northern Monkey

MsGiggles wrote: »

Guys I need some help. I have a colonoscopy today at 1. I took the prep last night and had an awful time I was vomiting and had severe pain and cramps. I was then up all night on the loo. Was all watery and clear all night and then this morning I am passing residue. I am actually roaring here thinking they won't be able to do the colonoscopy.

That's one way to get rid of the Christmas excess! (My last 2 have been on the week before Christmas) I've had residue on the morning of a colonoscopy previously and it's never been an issue, so hopefully it will be fine for you. Good luck with it.

Qreq

I googled "colonoscopy prep vomit". The second result was a Q&A article by the director of Endoscopy at Indiana University Hospital and professor of Medicine in the Division of Gastroenterology and Hepatology at the Indiana University School of Medicine, Indianapolis. This isn't medical advice for patients, but rather a statement of his process which itself contains an indication that other doctors processes may differ.

If the patient calls after vomiting in the morning, then I would first ask what the effluent looks like. If the rectal effluent is clear or only yellow or green (with mucus only), then we tell the patient to come to the unit for the scheduled procedure. [...] Contrary to some reports, I believe that the patient’s description of the rectal effluent does have some predictive value for the current quality of the preparation, and a patient reporting continued brown effluent is at increased risk of an inadequate preparation.

Again, this is one doctor's approach which may not represent your situation nor your doctor's approach.

For those interested, the full Q&A is at this PDF link. The part quoted above is from question 3.

livedadream

You'll be grand, I've had an emergency colonoscopy no prep don't at all, they'll be able to see what they need to see don't worry.
They can always give you an enema in the hospital that morning if it's not okay

MsGiggles

livedadream wrote: »

You'll be grand, I've had an emergency colonoscopy no prep don't at all, they'll be able to see what they need to see don't worry.
They can always give you an enema in the hospital that morning if it's not okay

Hi guys. Thank you all for your help. Scope went fine looked very clear on the camera. They have found some disease in the large bowel now that wasn't there before surgery but he is confident new drugs should do the trick x not sure how to feel. At least I know I am not going nuts !

The_Conductor

Great to hear it.
What sort of medication regime are they proposing- Humira or another biosimilar?
Take things easy one way or the other- low residue diet is the way to go.
I'm doing chicken with a little paprika for my dinner here- I was using tomato and worcester sauce until recently- when Lee Perrins decided to discontinue it

Have something nice this evening- I think most of us with Crohn's end up on a high protein/ low carb-low fibre diet- almost an Atkins or a Durkan diet- but for entirely different reasons than most........

Hmmmm

Have a lovely evening there!

Tony H

MsGiggles wrote: »

Hi guys. Thank you all for your help. Scope went fine looked very clear on the camera. They have found some disease in the large bowel now that wasn't there before surgery but he is confident new drugs should do the trick x not sure how to feel. At least I know I am not going nuts !

Best of luck MsG with the new drugs , I had really good results with humira for over a year ,
Glad you got over your scope without too much pain

MsGiggles

The_Conductor wrote: »

Great to hear it.
What sort of medication regime are they proposing- Humira or another biosimilar?
Take things easy one way or the other- low residue diet is the way to go.
I'm doing chicken with a little paprika for my dinner here- I was using tomato and worcester sauce until recently- when Lee Perrins decided to discontinue it

Have something nice this evening- I think most of us with Crohn's end up on a high protein/ low carb-low fibre diet- almost an Atkins or a Durkan diet- but for entirely different reasons than most........

Hmmmm

Have a lovely evening there!

He has put me on Pentasa and Cortiment. 1200mg of pentasa and 9mg of cortiment. Think it is some kind of steroid. He said I should get some relief after a week or so. Thanks to you all for such kind words of encouragement x

patnor1011

I know it is late but here is my story with prep. I had about 6,7 colonoscopies done so far. Only used prep first time. After that first one I had few surgeries, details are in this thread like 5 years ago I think. That time I got ileostomy and since then I never use prep as there is no point really. I did got enema once before colonoscopy and I was suffering like Jesus on a cross. Imagine sitting on a toilet and your body trying to push out something what isn't really there.

joefromireland

A new disease eradication scheme will be launched this week (PUBLISHED in the Farming Independent on the 06/12/2016 ) as the Irish dairy industry looks to protect the €1.7bn of annual infant milk formula sales from a ‘BSE-style’ disaster.

There is a growing body of data linking Johne’s with the debilitating Crohn’s disease in humans, while the spread of Johne’s in national cattle herds continues at an alarming rate.

Veterinary experts believe that up to 20pc of Irish herds – in both beef and dairy – are carrying the disease. Globally, it may be closer to 50pc in intensive dairy regions.
Although details surrounding the voluntary programme have been kept under wraps for months, the Farming Independent has learned that cost analysis by Teagasc's economics unit has estimated the total bill for the first seven-year period of the programme to be north of €85m.
see the full article
http://www.independent.ie/business/farming/dairy/dairy-industry-launches-disease-eradication-plan-to-prevent-bsestyle-disaster-35269781.html

If you read the article you will see the farmers lobby groups are worried about losing the Chinese market for infant milk formula , the exports could be stopped overnight, they are not worried about the Irish public stopping the consumption of milk and cheese because almost every Irish person are certain milk and cheese is good for us with no risk to their health. Also there is no mention of the extreme pain and suffering and early death this disease can inflict on babies, children and adults ,all that worries them is the profits at risk from the loss of the exports markets, not the health of the consumers drinking the milk despite the incriminating evidence linking the two conditions.

See the 2 youtube videos below for more information on Crohn's disease.

Crohn's Controversy: Cause, Vaccine and Anti-MAP Therapy

Achieving Remission of Crohn's Disease without drugs

Even more info on this site http://thecrohnsinfection.org/

The need to tell patients about the latest research linking Mycobacterium avium subspecies paratuberculosis (MAP) to Crohn’s disease and to extend an invitation to a symposium held on August 16, 2015 in Chicago discussing MAP’s role in Crohn’s. It has since grown into a home for people from around the world to find information on Crohn’s disease, MAP, and exclusive articles written by the experts in this field. While MAP is most closely associated with Crohn’s disease, new research is beginning to link MAP to other diseases currently classified as autoimmune.

I hope this post is of some help to people with Crohn's disease

MsGiggles

Hi Guys - hope we are all OK.

Just a quick question to all you pro's ! I am on Asacolon and some steroids to try and get a flare under control. The tablets that I was on were appearing in my stool fully intact so rang my IBD nurse to let them know - They are now putting me on Pentasa sachets which I have to take in the morning - Nurse said not to dissolve in water, literally pull off the top and pour into my mouth and swallow and then have a small drink !

Anybody have any experience of this ?
I am actually really bad for taking anything that is not a tablet !

OUTDOORLASS

Hi Ms Giggles, cd you put it into a bit of youghurt and swallow it quickly....

MsGiggles

OUTDOORLASS wrote: »

Hi Ms Giggles, cd you put it into a bit of youghurt and swallow it quickly....

That sounds good outdoorlass but he did say to me not to dissolve it with anything as it would work in my stomach then rather than my bowel....maybe a yoghurt would be OK - hopefully it wont taste too bad...!

Northern Monkey

I was on them when first diagnosed. They are a very fine granule and I didn't find them too bad to take. From memory I just tipped my head back and then swallowed.

MsGiggles

Northern Monkey wrote: »

I was on them when first diagnosed. They are a very fine granule and I didn't find them too bad to take. From memory I just tipped my head back and then swallowed.

Thanks so much Northern Monkey - I probably just need to suck it up LOL !

The_Conductor

Just back from my latest GI appointment.

Apparently- I've developed massive resistance to Humira- with a score of over 160 (i.e. higher than the machine can register) and am off it immediately.
Infliximab to start next week- alongside the dreaded Imuran (I was on it before but had a massive white cell crash). So- if anyone is around the infusion room next Friday in St. Vincents- we can compare battle scars- its my first dose, I was told to ensure I kept 4.5-5 hours free, but it'll be faster for the subsequent doses.

Have had bad bleeding lately- alongside a lot of pain- hopefully the infliximab alleviates some of it. Also coming off warfarin and going on Xarelto with immediate effect (I've to get an INR on Tuesday- and am good to go providing I'm in range 2-3).

My manager could see how upset I was after the appointment and gave me the afternoon off.

Also dropped my phone and shattered the screen. :mad:

I need a new body. And a holiday. And some decent painkillers. And a good night's sleep.

Not very happy.

OUTDOORLASS

Hey Mr C. Best of luck tomorrow. Maybe it has changed...but I was on the Inflix before I went on the Humira.
They used to admimister 100mg of Piriton in case of side effects, which would make you massively sleepy for about
24 hours. Maybe organise for Mrs C to get some new DVD.s for the smallies for Saturday, so ye can watch them
together, and you can get a sneezy sleep whilst they watch. I really hope it works well for you, you could do with a
bit of good luck. I tried Aldi today, but no new bodys or decent pain killers on this weeks specials (LOL)....
XXX.

The_Conductor

OUTDOORLASS wrote: »

Hey Mr C. Best of luck tomorrow. Maybe it has changed...but I was on the Inflix before I went on the Humira.
They used to admimister 100mg of Piriton in case of side effects, which would make you massively sleepy for about
24 hours. Maybe organise for Mrs C to get some new DVD.s for the smallies for Saturday, so ye can watch them
together, and you can get a sneezy sleep whilst they watch. I really hope it works well for you, you could do with a
bit of good luck. I tried Aldi today, but no new bodys or decent pain killers on this weeks specials (LOL)....
XXX.

Thanks a mill.
I'm going to be put on Imuran as well- after the massive antibody reading I developed on Humira- which is a bit ironic, as you're not supposed to be able to develop antibodies to Humira- which is how its supposed to differ from Infliximab- but hey, thats life.

No interesting painkillers here either- though I do have carte blanche to take as many of the 1000mg/30mg paracetamol/codeine tabs as necessary (up to 8 a day). They don't really cut it- the main reason for the codeine is to slow down my digestive tract- as I'm also now taking 12 imodium a day.

That vet in work had a point- if I was a horse, he'd shoot me..........

OUTDOORLASS

No if you were a horse, they.d cure you. We often say a good Vet is better than many Doctors..

uck51js9zml2yt

Wife's crohns flared up again when the hospital reduced her Imuran. It was effecting her white cells.
I asked them could she go back on her previous dosage a month later. Things have improved since:)

patnor1011

I am in a middle of bad flare now but I am not that bad as it tend to come and go rather quickly, maximum of few days. I have no clue what caused it but I suspect citrus fruit. I avoided it for most of the time last few years, only exception was blood red oranges lidl used to carry for a while. I could not stop eating them as nothing bad was going on in my plumbing. Regular orange was and still is no go same goes for orange based drinks or juices so you can imagine how I was stuffing myself silly with those red oranges and it felt like million dollar feast. I could eat clementines/mandarins for quite few months, like one two daily without any problem but my current flare I suspect started when I had two recently. I immediately felt cramps, pain all over and had to run to toilet which is rather funny as I do have stoma bag but I still had to take that race anyway.
My flare kind of clears itself after few days and I tend to eat only proven stuff and rather smaller amounts. That is sometimes tricky as I cant really say what is "proven" to be good as sometimes it happens that I cant tolerate even stuff I thought is good.
It is a constant battle without end in sight.
I just had appointment with surgeon to discuss my crohns consultant's plan for preemptive strike :mad: He suggested to remove everything from end of intestine all the way down as a precaution to prevent possible colon or rectal cancer in future. I went there to discuss it and my surgeon seemed not very eager to go for it. I mean he said he can do it no problem but that I do have to realize that if I go for it then there is no way back so he wanted me to go back to crohns consultant to have a talk again. According to him there are new treatments being discovered all the time and maybe something may come up for treating crohn's (I wish....).
And that is pretty much it. Now it is on me to decide what to do and I have no clue to be honest. If I go for nuclear option my life may improve a bit (if bag for life can be seen as improvement) but then there is still that slight tiny chance somebody may discover something....

On another note after bit of discussion here while back I went on to try CBD oil. I am ex smoker and since I could not stop smoking no matter how hard I tried many times in the past I am using ecig. Well 4 years or so off smoking and on very low 6mg nicotine atm I ordered some CBD for vaping to try if there is anything to it. Well my experience is very positive so I am ordering CBD oil which you eat too.
I have found that vaping it made me sleeping more soundly, not waking up 3-4 times every night I now sleep soundly all night long. I have found also that I am much calmer and relaxed. Well to make it short, here is article and I have to say that my experience is pretty much the same:

http://www.irishnews.com/magazine/2017/02/08/news/7-observations-from-using-hemp-oil-every-day-for-three-months-924860/?ref=yfp

livedadream

Evening my fellow cronies.... currently 1 litre into my moviprep cocktail this fine Sunday evening.... Jesus it's so different to the picolax and kleanprep!!!
I passed out the first two times I'd to do the picolax... this time it's almost like food poisoning minus the pains! So far so good.... I know it's going to get uncomfortable later but still.... I remember in the picolax it being like shooting lava from the start.... this isn't half as bad... hope everyone else is doing okay... scopes tomorrow... fingers cross there's nothing new to be found xxx

The_Conductor

livedadream wrote: »

Evening my fellow cronies.... currently 1 litre into my moviprep cocktail this fine Sunday evening.... Jesus it's so different to the picolax and kleanprep!!!
I passed out the first two times I'd to do the picolax... this time it's almost like food poisoning minus the pains! So far so good.... I know it's going to get uncomfortable later but still.... I remember in the picolax it being like shooting lava from the start.... this isn't half as bad... hope everyone else is doing okay... scopes tomorrow... fingers cross there's nothing new to be found xxx

Have to agree- of the three options- its the most humane and fair treatment to give a Chronie. Wish they'd ever consign the Picolax and Kleanprep to history- I still get nightmares of my last Picolax- the worst part of it is- its still in your system days later- despite probably not having worked fully on the day.

Best of good luck today- hope your scope/scan goes well, and the consultant comes up with a more appropriate regimen for you.

Qreq

For anyone who has had at any time, or is imminently getting an ileostomy: You may be interested to hear a talk from a rep from OstomyCure. That's a Norway-based crowd who came up with an implant that does away with the need to wear an external pouch on your stoma. Instead, the implant caps the stoma with a removable lid. The guy will be talking to a support group in Waterford later in the year [The previously announced date has been postponed.] Nevertheless, there will be a normal support group meeting as stated on March 1st, 7pm at the Solas Centre on Williamstown Road, Waterford. Ostomates or potential ostomates are welcome.

Edit:
Added the postponement news that came out a few hours ago.

tizer

For all Ostomists : I ampart of the Sligo Stoma Support Group which is established since 2000. We meet on the last Tuesday of every month and anyone is welcome to attend. We are having an Information Afternoon in The Bush Hotel, Carrick on Shannon, Leitrim this Sunday 26th February 2pm to 4.30pm. Most of the Ostomy companies will have stands displaying their products and we have some guest speakers including Susan Moore, Stoma Care Nurse in Sligo University Hospital. Please come along and spread the word. If you need any further info let me know.

patnor1011

Qreq wrote: »

For anyone who has had at any time, or is imminently getting an ileostomy: You may be interested to hear a talk from a rep from OstomyCure. That's a Norway-based crowd who came up with an implant that does away with the need to wear an external pouch on your stoma. Instead, the implant caps the stoma with a removable lid. The guy will be talking to a support group in Waterford, March 1st, 7pm at the Solas Centre on Williamstown Road. Ostomates or potential ostomates are welcome.

It does look good. I would like to include link for people to read more about it:
http://ostomycure.com/

Qreq

I've updated my previous post. The OstomyCure talk has been postponed until later in the year, however there's still a normal support group meeting on the scheduled evening.

MsGiggles

Hello All. Hope your all doing ok. I am looking for advice really. Last April I had surgery removing a small part of my bowel. In removing this they removed all active disease. December this year I had a scope after months of saying something wasn't right as I didn't get relief from the surgery. After the scope the consultant said he had found mild disease now in the large bowel that wasn't there before. In an effort to treat this he put me on asacol but unfortunately this didn't work as the entire tablet was coming straight thru my system whole. He then put me on Cortiment and Pentasa Sachets. The Cortiment eased some of the symptoms but even with the sachets I was seeing all of them just 3 hours later coming straight through. He then took me off the Cortiment as he wanted to see what would happen then. I was very worried about this as I knew the symptoms would reappear with avengence , which they did. They have asked me to provide 2 stool samples which I have to do a calprotechtin test but both samples were unable to be tested as I couldn't provide any faecel matter as it was all mucus. My GI doesn't want me to go on biologics as he says the disease is mild and he thinks that the biologics will be too strong for that. I have been on 6MP and Imuran before which caused pancreatitis so I really am at a loss as to what he is going to do next. Right now he has given me antibiotics for the week in case it's a bowel infection and I am due to see him next Tuesday. Whilst I am happy the disease that he has found is mild , the symptoms are debilitating. I am going to the toilet every hour and having pains more frequently. Has anybody had a similar experience that could offer some advice of where he might go from here ?

Thanks so much to you all for your continued support

Giggs