Crohn's Disease

Gael23

Do any of you not have really bad diarrhea? I have almost every symptom but I only have 2/3 loose stools per day

The_Conductor

Gael23 wrote: »

Do any of you not have really bad diarrhea? I have almost every symptom but I only have 2/3 loose stools per day

Everyone is different- there are some commonalties between us Chronies- but one of them would normally be diarrohea (though even this wouldn't necessarily be a constant- and would depend on a lot of factors, including whether you're flaring etc).

I'd seriously suggest you make an appointment with a GI consultant- if you feel you may have Crohn's Disease- its not a good idea to google symptoms on the internet and try to self diagnose- you only tend to see extreme cases on the internet- and while you may have Crohn's- you're really be best advised to get your GP to refer you to a GI consultant and take it from there- skip the looking up symptoms on the internet..........

uck51js9zml2yt

My wife has crohns and is on imuran and pentasa.
The imuran hits her white cells and the hospital reduce it which causes its own problems.

A friend's daughter a bag after the inflammation went back to the bowel.
It was the best year she ever had.
It gave her system a chance to heal. They reversed it and she's free of crohns.

Someone I know had recommended my wife to take high doses of vitamin d to deal with the auto immune side of it.
He has MS but is symptom free after taking vitamin d. He's talking 15000 IU a day with blood tests every 3 months to monitor it's effect on the body

Gael23

The_Conductor wrote: »

Everyone is different- there are some commonalties between us Chronies- but one of them would normally be diarrohea (though even this wouldn't necessarily be a constant- and would depend on a lot of factors, including whether you're flaring etc).

I'd seriously suggest you make an appointment with a GI consultant- if you feel you may have Crohn's Disease- its not a good idea to google symptoms on the internet and try to self diagnose- you only tend to see extreme cases on the internet- and while you may have Crohn's- you're really be best advised to get your GP to refer you to a GI consultant and take it from there- skip the looking up symptoms on the internet..........

Waiting for an appointment with a Gastroenterologist as we speak. I have private health insurance so won’t be waiting more than a few weeks thankfully.
On Monday I had a Colonoscopy for something else and the inflammation in many areas was found, and it was worse in the terminal ileum which I’ve seen mentioned here quite a bit.

The_Conductor

Gael23 wrote: »

Waiting for an appointment with a Gastroenterologist as we speak. I have private health insurance so won’t be waiting more than a few weeks thankfully.
On Monday I had a Colonoscopy for something else and the inflammation in many areas was found, and it was worse in the terminal ileum which I’ve seen mentioned here quite a bit.

Crohn's Disease tends to start in the terminal ileum and radiate outwards (but can occur anywhere in the digestive tract- and externally ( most commonly the mouth, the lips, eyes etc).

Inflammation of the ileum- does not necessarily mean its Crohn's Disease though- there are many things that can cause inflammation- and indeed, inflammation is a reaction that can sometimes be controlled with something as innocuous as antihistamines.

I'm not saying you don't have Crohn's Disease- I'm saying you have to let the GI consultant do their thing- and you shouldn't automatically assume that its definitely Crohns- it could very well be any of a long and debilitating list of other possibilities............

Googling symptoms on the internet- is not a good idea.

Gael23

So this morning I felt an unusually sudden urge to use the toilet and let’s just say the diarrhea that followed was to the extent that after using half a roll of toilet paper I had to jump into the shower, it just came so fast I wasn’t prepared at all.

I know self diagnosing is bad but kind of feel the writing is on the wall at this point

The_Conductor

Have you been given anything to deal with the inflamation you mentioned?
E.g. many of the anti-inflamatories (including the dreaded pred that we're all too familiar with on this thread)- can exacerbate diarrohea, to a ridiculous extent.
I'm not saying you do or don't have Crohn's- just- you *need* to stop focusing on symptoms and doing a join the dots exercise and coming up with a diagnosis. You may have Crohns- but you need to let the GI consultant and his team do their job. If there is a GI nurse in the local hospital- it would also be helpful talking to him/her and getting a few ideas of things that might help you (and they might put you in touch with a dietician who might give you a few pointers too).

Gael23

I’m on Mezavant, 4 tablets a day

The_Conductor

Gael23 wrote: »

I’m on Mezavant, 4 tablets a day

Have a look at the leaflet that comes with Mezavant. It lists the list of common side effects of taking MZ (or indeed any mesalazine based medication). Top of the list- is diarrhoea (followed by nausea and vomitting- and then going into a long and meandering list of less likely side effects).

Mezavant is a good first line medication for UC- given the gastric coating its active esp in the large intestine. If you feel that its not working- or you are experiencing abnormal or unusually harsh side effects- you need to bring this to the attention of your GI consultant- they have many other options at their disposal- just because one thing doesn't work as intended- doesn't mean they can't try something else. One way or the other though- you need to bounce all of this off your consultant and his team- and stop self diagnosing- I know its tempting to do so- esp. with all the information you can find on the internet- but honestly- its not helpful- and you can terrify yourself- as you only tend to find the horror stories and the absolute miracles on the internet- not what the 95% of patients actually experience, only the outlying cases.

Gael23

Consultant that done scope rang me this evening. Biopsies have confirmed IBD, what specifically I dont know yet.

Gastroenterologist I am to see is going on holiday the week after next for 2 and a half so all I can do is hope he can see me next week before he goes.

I have a few complicating factors that are going to cause problems. I take Biologic injections forPsoriasis and from my own research Enbrel doesn't work for IBD. Despite that I cant simply stop talking the Enbrel and allow my Psoriasis to go out of control. I also have a Kidney condition that means there are certain medications I cant take. Thats just a brief overview of my medical history, theres more!, so I reckon all the consultants I see are going to need to talk to each other. I took Prednisolone years ago and once you take the coated ones its bearable.

The_Conductor

If its any help- there are biologics that work for both Psoriasis and Crohn's at the same time (such as Stelara for instance).
It might be worth your while exploring with your consultant to see if you can kill two birds with the one stone (aka- just take the one biologic- rather than having to take two).

Sorry to hear that you have IBD confirmed- hopefully its a stepping stone on the path to a treatment regimen that works for you.

batgoat

Had a pretty frustrating week. So felt like I was flaring last week and ended up having a colonoscopy today. Turns out things don't look great inside. Went 8 years with no activity with crohns up until last year. So next plan is, I'm going on imuran and remicade.

This perfectly coincides with me starting a new job in a different county in a month. So everything feels a bit messed up. The infusions etc are a frustrating concept for me, sort of wish I could just inject myself with something.

Gael23

Saw a Gastroenterologist today. I have a fairly impressive medical history and he thinks it’s all down to Crohns. He said it can take up to 14 years for it to fully develop which ties in nicely with the onset of symptoms.
Was in there for 45 minutes so a hell of a lot was discussed and due to my history there’s no easy solution but for now he has taken me off the Mezavant and put me on Pentasa and another one called Budenofalk which is quite hard to get. Next I have to go for an MRI to examine my small bowel and then see him again in a month after which time I will have had a conversation with my dermatologist.

Gael23

Anyone got an experience of an MRI on the small bowel? Is it just a simple scan do are you given contrast dye?

batgoat

Gael23 wrote: »

Anyone got an experience of an MRI on the small bowel? Is it just a simple scan do are you given contrast dye?

Think when I had mine, I had to drink a contrast thing for a half hour while I was waiting. It wasn't barium so wasn't too tough, just annoying.

McLoughlin

Had to drink contrast for my MRI on my bowl a couple of years ago it didn't taste great but allot better than other stuff I had to drink prior to procedures.

Gael23

Had the MRI today. Not a nice experience. The contrast didn’t taste that bad at all and got an injection of more dye.
Everything was going ok until I got home, I put a small piece of potato in my mouth and I had pretty nasty diarrhea within about a minute, also I just generally don’t feel well. The nurse did warn me about loose bowers after so not worried once it stops.

Gael23

So spent exactly 55 minutes with my Gastroenterologist yesterday.

For me Humira is the answer for my treatment.

BUT when I was born I had very serious medical issues and as soon as I was baptized and my close family had seen me I was sent straight to Crumlin children’s hospital . The consequence of that was I never received all of the vaccines that babies get like TB and such. Now, that means that if I go on Humira and I come into contact with someone carriying TB or measles it could kill me should Humira suppress my ability to fight it. So now I’m going for a second opinion to Professor Garret Cullen in Vincent’s to establish the best way forward as I’ve got a very complex medical history.

For now it’s keep up the Pentasa and Budenofalk until I see him.

Ladjacket

Hey!

Transferring my care from Letterkenny to Tallaght - anyone go to the GI there? How do you find it?

I am currently on the remicade infusion so i think i may have to get this done at Naas as there is a long waiting list in Tallaght.

Northern Monkey

Ladjacket wrote: »

Hey!

Transferring my care from Letterkenny to Tallaght - anyone go to the GI there? How do you find it?

I am currently on the remicade infusion so i think i may have to get this done at Naas as there is a long waiting list in Tallaght.

I see the consultant GI (Niall Breslin) from there privately and find him very good.

Ladjacket

Northern Monkey wrote: »

I see the consultant GI (Niall Breslin) from there privately and find him very good.

Thanks NM - it doesn't say on my apt letter who i will be seeing. Really wrenching leaving Letterkenny, been treated there for 10 years. Nervous about what the future holds now in terms of they may change my treatment etc.

Gael23

How is everyone doing?

I'm doing pretty ok. Started Humira finally 2 weeks ago and it made a difference within 2 days. At this point I'm down to 2 motions per day, still on the loose side but getting better all the time. Thats from liquid every time I ate.

Due to the complexity of my medical history I think i'll have to come off Pentasa because it can affect the kidneys so not sure whats next there.

patnor1011

Gael23 wrote: »

How is everyone doing?

I'm doing pretty ok. Started Humira finally 2 weeks ago and it made a difference within 2 days. At this point I'm down to 2 motions per day, still on the loose side but getting better all the time. Thats from liquid every time I ate.

Due to the complexity of my medical history I think i'll have to come off Pentasa because it can affect the kidneys so not sure whats next there.

Glad to hear it works for you.
It was pretty much the same for me. I started with 4 doses a week for first 2 weeks then 2 doses next 4 weeks then down to one for few months. I had to stop after few months as I started losing hair I had several bald patches on my head.
After a while off humira my hair grew back.
No major problems since then I was practically off any medication and safely eating nearly everything up until summer when my crohn's started slowly creeping back.
It was bad for a while but after course of antibiotic and on steroids 3rd week now slowly getting better again. Waiting for CT scan.

The_Conductor

Surgery to remove gall bladder here coming up next week.
Apparently- another one of the things they neglected to mention- was Crohn's Patients have an unusually high risk of gall stones.
I've ended up in A&E three times since May- with Pancreatitis- the first occasion with fairly bad kidney damage too.
As long as gallstones keep blocking my Pancreas- its leading to repeated organ shutdown and damage.
Its full open surgery- they can't do Laparoscopic because of the amount of strictures and other issues- and they have no idea what they're going to find when they open me up. On the bright side- the surgeon has an excellent sense of humour and seems like an all-round nice-guy.
I asked if they'd do some more surgery when they had me open (Crohn's related)- and gave them a little list of things that need to be dealt with- given how unsure they are what they're going to encounter- they wouldn't undertake to do anything. Time will tell. Hopefully I'm not in long- my sick leave is completely and utterly shot after the summer from hell I've had. For good measure- they can't do a lot of the contrast scans on me- because of how bad the kidney damage is

Wonder how the new diet after the gall bladder is gone- goes with the low/no fibre diet for Crohns?

essgee268

didn't work that immediate with me got little worse for month or six weeks but haven't looked back since its working brilliantly

OUTDOORLASS

Humira also working great for me. Mr Conductor....got my g/bladder removed in 2004, full open surgery.... The surgery was a doddle
in comparison to the g/bladder attacks. Have also had kidney stones.....
I dont follow a particular diet....just eat very well, and try to keep away from the bad stuff. Lots of water etc....

The_Conductor

OUTDOORLASS wrote: »

Humira also working great for me. Mr Conductor....got my g/bladder removed in 2004, full open surgery.... The surgery was a doddle
in comparison to the g/bladder attacks. Have also had kidney stones.....
I dont follow a particular diet....just eat very well, and try to keep away from the bad stuff. Lots of water etc....

Kidney stones here too- have an referral to get them blasted and broken up.
I was on Humira- but developed antibodies to the Humira- and had to come off it. I'm now on Stellara- which works in a different way to Humira- alongside Imuran to ensure I don't develop antibodies to it.

I honestly try to follow a reasonable diet- I don't always succeed- but I try.

Hopefully I'm out before too long!

OUTDOORLASS

Hey Mr C, nothing wrong with a piece of fresh fish and a nice glass of red !!
I find if I dont have it in the house I.m fine. Lots of flippin rubbish in the house due to Halloween....and its calling to me..
eat me ..EEEEEat me........
Giving whats left away today. I.m only a size 10, but I have high cholesterol....wonder if this is a crohns thing too....

Gael23

Had a bit of a bad day today but possibly self inflicted. Felt sick after lunch so I’m thinking what I ate was maybe too greasy. Most of it come back out but it wasn’t really loose or anything

batgoat

Gael23 wrote: »

Had a bit of a bad day today but possibly self inflicted. Felt sick after lunch so I’m thinking what I ate was maybe too greasy. Most of it come back out but it wasn’t really loose or anything

I sort of try to keep a decent enough memory of what doesn't work for me or try a food diary maybe? It's a pain in the ass to manage, literally unfortunately.