Just Diagnosed

[dmste]

Hi all

Just joined the forum after being diagnosed on Friday just gone - 29 October.
So... my story....

Early August this year I started experiencing a change in bowel habits. I was always a once-a-day kind of man but started feeling the urge to go during the evening. Wasn't too worried at the time, thought perhaps I just had a bit of a bug or something.
A couple of weeks later I was on holiday in Spain and came down with diarreah really badly - lasted most of the holiday and I felt absolutely exhausted with it. Again, at the time, I put it down to a Spanish tummy bug.
Came home and began to feel a little better up until around a fortnight ago when it hit me really hard. Joint pain, persistant diarreah, bleeding from my rectum, constant lethargy, no appetite, weight loss, terrible piles. I could no longer go to work and knew I had to see my GP.
So I saw my GP on 18 October. I was booked in for a blood and stool test which were done on 20 October. On 25 October my results were back and I saw the GP again. I was told that my stool culture had come back clear but my blood was showing signs of inflamation. I was asked if I had any family with an IBD. I told her that both my aunt and her daughter both had Crohn's. I was prescribed some antibiotics, sent for further blood tests and referred to the gastroenterologist.
I went for the further blood tests and on 27 October I got a call from the hospital informing me that they want me to go into the day procedure suite for a flexi-sig on 29 October.
Went for my appointment, had an enema, went in for the procedure, had no sedation and hated every minute of it! The outcome was diagnosis of Crohn's disease.
I have been given medication of Ferrous Sulphate, Prednisolone and Azathioprine, which I need to take for the next 4 weeks - as well as go for regular weekly blood tests.
I took the first dose of these medicines on the day I was diagnosed - 29 October, and by yesterday morning I already felt a million percent better!

My diarreah seems to have slowed down but has been replaced by something with the look and consistancy of black tar (sorry for the detail!) - is this normal? I also feel a little hyper, happy and full of energy. I'm guessing this is the steroids. I also have my appetite back. I guess I'm a little worried that this is a kind of false feeling of being well again, but at the moment the medication feels like a miracle cure!

I feel I was very lucky to be diagnosed so quickly. Within two weeks of my first visit to my GP, I was booked in for the flexi-sig and diagnosed.

I look forward to hearing from anyone who has been on the same medication, possible side effects and what I may go through in the future.

Thanks for reading

 

[DustyKat]

Hi dmste and :welcome:

Good to see you here and you sure are lucky to have such a quick diagnosis but I reckon your doc sounds like she is on the ball!

Your right, the pred is the miracle drug for you at present. It will reduce the inflammation settling your diarrhoea, increase your appetite and have you whizzing. It does come with it's downsides though which may include insomnia, moodiness, moon face, rage etc..........everyone is different though and others will be along to tell you of their experiences. Go to the search function on the tool bar and put Prednisone in and you will find many threads about it.

The Azathioprine is an immunosuppressant and the idea would be for the pred to knock the disease on the head hard and fast and then the Aza to take over for the long term. Most information/experiences about your meds will be in the treatment forum.

The black stools may be some old blood still working through your system but also the Ferrous Sulphate (iron) will cause your stools to turn this colour so don't expect them to be any different to what you have now.

Browse the forums and if you have any questions just fire away and nothing is too much information around here! :lol: Good luck with your treatments and welcome aboard!

Take care,
Dusty

 

[dmste]

Thanks for replying so quickly Dusty and for your advice.
I am a little worried about the Prednisone - I think I'm on a high dosage of 40 mg too.
But I guess for now I should just follow my doctors advise and stick with it.

I have read alot about calcium - should I be taking calcium supplements? I have some here with vitamin D, but not sure if they will 'clash' with the other medications I'm on.

 

[DustyKat]

Try not to worry about the pred too much. It is pretty standard to start with it to get things under control and as I said everyone has different experiences. Many have been on it multiple times and some say it's okay others say never again!...............it really is very individual as all the treatments are. 40mg is pretty average for what they are trying to do and it sounds like it's working so that's good! Definitely take the calcium and Vit D supplements 'cause as Joan says "the Pred is a bone robber!" and it won't interfere with your other meds.

Dusty.

 

[Rebecca85]

Take the calcium and vit D, but they will clash with the ferrous sulphate, leave 2 hours between them.

 

[Dexky]

Welcome DM!! Four weeks is a very quick pred taper, or did you mean that was how long you would stay on the 40mg before you start to taper? My son also quickly responded to the pred. We've had a great year so far since he came off his taper early this year. I hope you continue to be well. Good luck!!

 

[DustyKat]

Take the calcium and vit D, but they will clash with the ferrous sulphate, leave 2 hours between them.

Thanks Rebecca! I forgot about the Iron!

Dusty.

 

[dmste]

Thanks all for the advice. I did mean that for starters I am on 40mg of pred. No idea what I'll be on after that.
Just one more thing for now... Should I try probiotic supplements? Any foods I should or shouldn't avoid?

 

[StarGirrrrl]

With regards to food, alot of people find a low residue diet can help, but they best thing is to keep a food diary and when you have problems see if anything common crops up, then avoid it and see if it helps. Very much an individual thing. I saw a thread about Doritios for example, where many can eat them, yet I have one and am in agnoy!

Was interesting reading your story, i'm like the flip side of the coin to you. Started having bowel problems and put it down to a bug, didn't clear so went to GP. Stool normal but inflammation levels high. Get sent for a flexible-sig, over a 3 month wait. This comes back normal and in a further 4 months get my gastro appointment. "Oh you have IBS, don't worry about the blood tests, you probably have cystitus" (believe me, us ladies KNOW when we have that! lol).

Gives some meds which allow me to eat again but problems persist, bring this up at Gastro "everyone with IBS has problems. See your GP now instead of coming here".

2 years later I wake up with a swollen upper arm which slowly develops into a very painful shoulder joint. End up 6 months later at Rheumatology who thankfully ordered a WBC scan of my digestive area, which found inflammation. I was not called in, had to wait 3 months for my next appointment after a screw up. On a side note every time my inflammation is measured over the next 4 years it is raised. Thankfully Rheumy picked this up.

2 months I finally get a gastro appointment, after complaining. They are still on about IBS but am waiting for a colonoscopy date and then MRI if that's clear. In pain with shoulder and terrible abdominal pains, down to a few food groups and my weight is really dropping.

I'm glad though that for some the road to diagnosis is easier. I really don't want anyone going through what I am! Hopefully the meds work for you and you enjoy a long remission Hope you don't mind me sharing my story. This forum is a great place

 

[Astra]

Hi dmste
and welcome

40mg seems to be the starting dose, yes, but try not to taper too soon, it'll need a good month to get working on you, then taper by 5-10mg a month, this is how I did it, and 9 months later, I feel fine, no symptoms. I'm nearly done now, one more week at 5mg.
One tip for you, take your Pred as early as you can, maybe 6am, cos this will reduce the insomnia, and may wear off by bedtime.
Yeah, take some probiotics if you want, many peeps do, I don't.
Diet is a trial and error thing, what works for some, doesn't for others, diet alone won't get rid of inflammation, it can however reduce symptoms like diarrhea and gas and bloat. Whenever I feel crap, I resort to the low residue diet, you can find this in the ForumWiki, it works by giving your bowels a rest, it works for me.
I don't eat red meat, it cripples me!
Keep a food journal, document everything you eat, a process of elimination, then reintroduce it back to see if it makes you worse, or better!
Glad you found us, stick around, lots of friends here for you
lotsa luv
Joan xxx

 

[dmste]

Thanks guys... this is all new to me and this place is providing me with lots of tips and advice already!
StarrGirrl - so sorry to hear of your experience so far, I really hope you get a proper diagnosis soon. i have had the awful shoulder pain too.
And thanks Astra - I will start keeping a food diary and see if there are any triggers. I used to be a big fibre eater, brown bread, bran flakes for breakie (sometimes weetabix), but i guess all this kind of stuff is a no-go now??
At the moment I'm sticking to bananas, yoghurt, white bread, rice krispies and little meat. I would like to get a bit more adventurous though!
Thanks again all.

 

[Astra]

Hiya dmste

I still have Weetabix tho, every morning, the only high fibre stuff I will eat now! Just to keep things moving along smoothly!
And I only eat chicken, turkey and salmon, only cos I think red meat sits in your guts for weeks, rotting! Plus cutting out red meat reduces the risk of bowel cancer too!
good luck with your diet
xxx

 

[dmste]

Hiya dmste

I still have Weetabix tho, every morning, the only high fibre stuff I will eat now! Just to keep things moving along smoothly!
And I only eat chicken, turkey and salmon, only cos I think red meat sits in your guts for weeks, rotting! Plus cutting out red meat reduces the risk of bowel cancer too!
good luck with your diet
xxx

Thanks Astra - I might try and merge weetabix back in for breakie in a couple of days time and see how I get on them... I miss them!
I guess is just a case of trial and error. Will try and cut out the red meat but I did used to enjoy the odd steak and a roast beef dinner, but I hear what your saying about it sitting in your guts for weeks... puts you off a bit!
I take sugar in my tea and coffee - would i be better replacing this with an artificial sweetener, or are those just as bad?

 

[Astra]

Hiya

I still have a bit of sugar in coffee and tea and on me Weetabix!
I think if you're sensible with the sugar, it'll be ok, it's just too much sugar can cause an overgrowth of candida, which can exacerbate your symptoms.
xxx

 

[dmste]

Brill - okay I'll just try and cut right down in that case. Thanks again

 

[StarGirrrrl]

It always helps to make healthy changes, but that doesn't mean you can't have the badder things for a nice treat now and then, as long as it's not a trigger food lol!