Ulcerative colitis

shalalala · 31-07-2014 8:04am

2nd Row Donkey wrote: »

Eh, ok. So I just Googled it myself. That's some list of side effects.

Kinda bizarre that they say to watch out for nausea, abdominal pain, Diarrhoea, change in stool colour etc. like hello, that's the symptoms before taking the drug!!

I definitely had the night sweats. Must have changed my duvet cover every 2nd night for a month.

The other one that stuck out was the reference to this:

This medication may increase your risk of getting a rare but very serious (sometimes fatal) brain infection (progressive multifocal leukoencephalopathy-PML). Get medical help right away if any of these rare but very serious side effects occur: clumsiness, loss of coordination, weakness, sudden change in your thinking (such as confusion, difficulty concentrating), difficulty moving your muscles, problems with speech, seizure, vision changes.

The middle bit ... "sudden changes to your thinking such as confusion, difficulty concentrating"

This one concerns me. I clearly remember struggling in work and at home. Trying to focus, concentrate etc ... Thankfully I was finished the Imuran after about 2 weeks.

I am on it for life as far as I can tell. I was told to wear factor 50 all the time and watch out for joint pain. The rest I didn't google. But after reading that it makes a lot of sense, I have become forgetful.

The doctors said it is a case of the good outweighing the bad

peteb2 · 31-07-2014 8:47am

Thanks guys! Thanks a bunch!! Its bad enough I have to catch every cold and flu going from my creche-going son due to having no immune system.

Now you're telling me it messes with my head!!!

2nd Row Donkey · 31-07-2014 9:03am

shalalala wrote: »

I am on it for life as far as I can tell. I was told to wear factor 50 all the time and watch out for joint pain. The rest I didn't google. But after reading that it makes a lot of sense, I have become forgetful.

The doctors said it is a case of the good outweighing the bad

It's hard to explain but it's like my brain wasn't able to operate at full capacity. .. it felt like it was stuck in 2nd gear.

I also remember having discomfort as opposed to pain just below my ribs (upper abdominal) although truth be told I don't know if that was while I was on the Imuran as I was on steroids and asacolon for a month or more beforehand.

2nd Row Donkey · 31-07-2014 9:07am

peteb2 wrote: »

Thanks guys! Thanks a bunch!! Its bad enough I have to catch every cold and flu going from my creche-going son due to having no immune system.

Now you're telling me it messes with my head!!!

Don't over think it Pete. No pun intended. It's not like you become a zombie or something.

2nd Row Donkey · 31-07-2014 9:08am

Shalalsla ... what's the reference to factor 50 about?

shalalala · 31-07-2014 12:26pm

2nd Row Donkey wrote: »

Shalalsla ... what's the reference to factor 50 about?

Increase risk of melanoma because of imuran

2nd Row Donkey · 31-07-2014 1:33pm

shalalala wrote: »

Increase risk of melanoma because of imuran

Jayzus. The week I started Imuran I was suppose to go to Egypt for 2 weeks of sun. But it was cancelled for unrelated reasons. Good job. Must have a word with my GP

Shandog · 09-10-2014 9:46am

Sorry for the delayed response.
About two and a half years ago while being on Imuran, I was in the beginning stages of a flair up but thought nothing off it. Until I got dizzy, clumsy and basically like a fuzzy feeling in my head. I put it down to the Imuran giving me the weekly sickness. Anyway this continued for two weeks until I collapsed and was rushed to hospital, where I remained for three weeks.
However while I was there (in a private room) I used get a really strong fever at seven o clock everynight, and would last until five in the morning. They checked everything CAT, Ultrasound, ECG but it lasted 17 days. I was convinced it was the Imuran, shur I could smell it. I rarely sweat but here I was having to get off the bed cause I was afraid I was going to drown in my own sweat (sheets changed only twice in three weeks).
I repeatedly told them it was the Imuran but they got foreign disease specialist's to see me but never listened. Anyway while their I was on a drip and steroids and after three weeks it stopped. They never found what it was, the only thing that showed up in a bronchoscopy was that I had holes in my lungs ( totally unrelated and harmless.
So when I was leaving what was prescribed for me Imuran. When I get back to Ireland at Christmas never going near that sh*te again, the Colitis is worse.

dutopia · 29-10-2014 2:56pm

I have UC 14 years now. I get on average 1-2 flair ups a year that last a few weeks each.

Big problem for me is I get really bad side effects from mesalazine based treatments, so I have to use steroids most of the time.

I haven't found any specific diet change has made things any better or worse.

mgn · 29-10-2014 7:11pm

I have uc 7 years and it seems to me now is i get 1-2 flare ups every year no matter what i eat so for the past 2 years i just eat what i want and still only get 1-2 flares a year

2nd Row Donkey · 29-10-2014 9:50pm

3 flare up in ten year so I guess I'm one of the lucky ones.

first one was easily the worst as it took a he'll of a long time to diagnose.

anyone on here have problems with thing like life assurance or mortgage protectionbecause of UC....

dutopia · 30-10-2014 1:15am

2nd Row Donkey wrote: »

anyone on here have problems with thing like life assurance or mortgage protectionbecause of UC....

Hmm interesting, I've never considered that before. I guess it's a serious condition that needs to be disclosed but I don't know how much it would affect anything.

2nd Row Donkey · 30-10-2014 7:46am

dutopia wrote:

Hmm interesting, I've never considered that before. I guess it's a serious condition that needs to be disclosed but I don't know how much it would affect anything.

quite a bit unfortunately. I've had to pay additional 'loading' on my policy for the last 11 years. I also had a number of life assurance firms refuse to cover me and almost missed out on buying my current house because I couldn't get mortgage cover

peteb2 · 30-10-2014 9:49am

2nd Row Donkey wrote: »

quite a bit unfortunately. I've had to pay additional 'loading' on my policy for the last 11 years. I also had a number of life assurance firms refuse to cover me and almost missed out on buying my current house because I couldn't get mortgage cover

I think it comes down to the level of medication and whether they request a medical report. Because I work in a brokers -general side - and our life guys tell me i shouldnt have a problem. Also frequent flare ups are likely to cause a problem.

2nd Row Donkey · 30-10-2014 11:48am

peteb2 wrote:

I think it comes down to the level of medication and whether they request a medical report. Because I work in a brokers -general side - and our life guys tell me i shouldnt have a problem. Also frequent flare ups are likely to cause a problem.

I think in my case is to do with the fact that the very first time I ever applied for life assurance (for mortgage cover) was also the first time I had a flare up ..but at that stage I didn't have a diagnosis, so it was all very open ended as my medical condition could have been diagnosed as something a lot more serious and who wants to give life assurance to a guy who might have cancer or God knows what...

anyway since then I've had 'black mark' against my name ... or so I've been told. so each time since I've had to just threw hoops to get the cover (especially if I change broker or policy ) even though I'm barely effected all.

Totofan99 · 01-04-2015 1:36am

Well, welcome to the gang, I guess!

I can obviously only speak for myself, but generally my flare-ups start with noticing some blood, and then it's a gradual decline where there's more and more blood, diarrhea, and then I start to get pains. I would have thought that the flare-up would get worse and worse until you had to do something about it, so maybe you have been lucky. I can only speak from my experiences.

Anyway, the important thing is not to worry about it. If you want, you can make a list of questions and concerns and discuss these with your consultant in 3 weeks time. You could ask your consultant to refer you to a dietitian also ("Dietitian" is the medically protected term. "Nutritionist" is not.).

I'm definitely interested in the ISCC meeting. I never seem to be able to make it to them though! Hopefully I'll make this one.

rightman · 27-02-2019 9:44pm

Hi All,
Any chance someone here could recommend a Gastroenterologist Consultant based on their own experience?
I've been diagnosed with UC back in 2000 - last couple of years I've been looked after by one local doctor but he took a different role that doesn't allow for seeing individual patients...
I've had appointments with two different consultants since but I struggle to be listened to or to have any option to ask questions (plus a bit of time from a doctor to answer them). I have a feeling that all they're interested in is to make profit and hopefully maintain, maintain and finally say oops - time to cut or chemo! I've measured the actual time of my last appointment - 7 minutes and 150e. It's like a joke - are you feeling well? any blood? here's your prescription and I'll see you in 6 months... He gave me a prescription for Salofalk and Steroids - take them when you feel you need to take them he said! Mad stuff - I took some steroids in the past and every single time it was strictly controlled by my leading doctor and there was none of this "cowboying".
I'd love to find a doctor that for the money will actually pay some attention to what I say and will try (even a bit only) to get to know me and my case. I don't mind the cost - it's normal that these visits have sense only in private rooms.
I appreciate any feedback and wish you all well!
Thanks!

Ulcerative colitis

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