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Crohn's Disease Forum » Your Story » Newly Diagnosed with Crohns


03-21-2014, 06:06 AM   #1
Spootage
 
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Newly Diagnosed with Crohns

Hi everyone.

I am a 27 year old male that has recently been diagnosed with Crohn's disease. I struggled with a weird stomach pain that would come and go for three months before having a colonoscopy that discovered ulceration at the start of my small intestines. Coupled wih this was a complete lack of energy, slight light headed ness, changing bowel movements and a lack of appetite.

Today is day 8 of taking my medication. I am on the following drugs to help the situation:

3g Salofalk granule a day
25mg of Panafcortelone a day (just decreased from 37mg)
100mg of Azamun a day (just increased from 50mg)

After my 3rd of 4th day of taking this medication I have gotten flu like symptoms - sore throat, dry cough, raspy voice - generally feeling unwell. I understand that this is common after having a look over these forums? Should I be calling my dr about this? It's no worse than any other normal flu/cold I have had in the past.

I have also been getting up 2-3 times in the middle of the night for the last 4 days to pee. Looks like this is another side effect of the steroids?!

I'm also taking a daily multivitamin and vitamin d tablet, which I have been for the last few years.

I have found that caffeine seems to be a trigger for my issues. I've only had caffeine (combination of coffee and coke) 4 times since my issues started happening and each time I have had stomach pain for a week.

Is there anything I should really be aware of with Crohns?

Last edited by Spootage; 03-21-2014 at 06:43 AM.
03-21-2014, 06:47 AM   #2
superzeeman
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I always wondered if getting up to pee was related to crohns. I have had to go three times a night since my initial diagnosis at 19 years old. Anyway, sorry to hear about you having crohns but welcome to the forum. There are a lot of helpful people on here and I am sure that you will get some more answers to your questions. Welcome!
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03-21-2014, 08:41 AM   #3
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Hi Spootage, I am also from South Australia! Sorry to hear you've just been diagnosed with Crohn's, if you are like me you will be doing lots of research and find out as much as you can as everybody is different. Mine is in the terminal ileum, it started in 2006 and I never had any more trouble until a couple of years ago with loose bowels, pain on and off. I have been on salofalk and steroids but this time last year it was felt that they weren't giving me any long term relief so I had 7cm of small bowel removed last June. Unfortunately I didn't know they had taken the ileocecal valve and now I have almost constant diarrhea because of bile salts. I am on thioprine for the next two years and vits B12 and D as I have malabsorption as well. All my blood tests are good and I have no pain, it's only the D that I'm upset about as it's interfering with day to day life. I can't say I've had any symptoms like yours with the meds, have you checked the side-effects? It wouldn't hurt to check with the doctor. Thioprine does compromise your immune system, they suppress it to stop it from flaring up Crohn's. I was glad to get off the steroids, they dealt with the inflammation but long term use gave me a moon face and made my hair brittle and made me eat all the time. Crohn's is not a one size fits all, you have to work out what upsets you. I take yakult every day, I don't know if it's helping I just like the taste! I rarely drink alcohol, don't smoke, certain things upset me more post-op like orange juice/fizzy drinks/spag sauce (think it's the tomatoes). I have long thought coffee might be a problem but I'm loathe to give up my morning plunge and I only drink one or two a day. My friend works with a young guy who has a problem with tea so you see everyone is affected differently. My advice is to read everything you can, research as much as you can, go on forums, ask questions and get support, look into dietary solutions (FODMAP), keep a food diary and note if anything upsets you, most of all keep a sense of humour and keep living your life, be kind to yourself and I hope you are soon in remission which is where we all like to be! Take care and good luck
03-24-2014, 05:17 AM   #4
Spootage
 
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Thanks to everyone that has replied.

Bit of an update - I still have flu like symptoms, however they seem to be getting better. I had swollen lymph nodes in my kneck today for a couple hours. Had some throat lozenges which seemed to help. The issue has gone away tonight, so was just an issue for a few hours.

I think I will contact my GI tomorrow just to check in to see what he says, as I am a little concerned.
03-24-2014, 08:53 PM   #5
Spootage
 
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My lymph nodes got swollen again around 9pm last night and as a result I was having slight trouble breathing. It was just a bit of a shortness of breath as my throat felt tight.

Tried to go to the walk in dr but that we're closing at 10pm and had too many people waiting. Decided to go to the emergency room at the hospital at the advice of the other half and the receptionist at the drs.

They checked my blood pressure, did a urine sample and a blood test and sent me home at 2am. They didn't give me anything for the issue, however it had gone away by then anyway.

I have a specialist appointment with my GI today as the hospital called him and squeezed me in. I had the appointment booked for next Monday anyway and was due to get the blood test on Thursday.

Hospital did mention that I had a higher than normal white blood cell count so I will discuss that with the GI.
04-25-2014, 03:03 AM   #6
Spootage
 
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Thought I would give an update to how I'm going.

My lymph node issue has gone away with a dose of antibiotics, so that's great.

I went for an MRI and they found that I actually have 20cm of my small intestine that is inflamed, not 5cm as originally thought. Specialist says that treatment, etc is all the same.

I'm down to 10mg of the pred and have increase to 150mg of the Azamun. That was on 17/04/2014.


I'm getting some pretty bad side effects, presumably from the steroids. I have experienced:

agitation
- anxiety
- dizziness
- fast, slow, pounding, or irregular heartbeat or pulse
- headache
- irritability
- mood changes/swings
- nervousness
- shortness of breath
- trouble thinking, speaking, or walking
- troubled breathing at rest
- weight gain
- Muscle weakness


As a result, I'm now on anti anxiety medication as whenever I left the house I had anxiety attacks. I seemed to be ok at work, but if I was at a restaurant or the shopping centre it would hit me. Only been on them 4 days so hopefully it helps. However since starting them I've felt nauseous a few times.

I'm just so sick of this disease and all the side effects that are coming with the drugs. It's been a looooong journey since I had an uneasy stomach in November and it just feels like it will never end. I don't even remember what normal feels like anymore.

Last edited by Spootage; 04-25-2014 at 03:32 AM.
04-25-2014, 03:21 AM   #7
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All of those are normal Prednisone side effects, at least some of the weight gain is water retention. So you should lose at least some of it quickly, any you gained from eating more due to increased hunger will stay unless you exercise if off.

Prednisone causes all these side effects because the body turns it into Prednisolone in the liver which in turn mimics Cortisol, an important steroidal hormone. Cortisol can be broadly thought of as an "up tempo" signal, it signals the body to produce more blood sugar, burn more calories, retain more water, and most importantly, shut down processes not needed for immediate survival like the immune system and bone formation. It's why the drug has such a long list of side effects.

Normal comes back. When you get into remission you can likely start living like you did before, but at a slower pace and with another pill in the morning (or evening) to make sure you don't get sick again. Most of the long term medications have nowhere near as many nasty side effects as prednisone. I promise you'll get better!
04-25-2014, 03:30 AM   #8
Spootage
 
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All of those are normal Prednisone side effects.

I promise you'll get better!
Thanks. It's nice to hear that from someone other than a dr.

It's just been a very difficult time on the pred. The side effects are worse than the Crohns that it's treating in my opinion. The worst is the anxiety and mental changes. I can deal with putting weight on as I don't care what I look like visually.
04-25-2014, 03:39 AM   #9
Orchid
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If you need to take a steroid again you can see if your doctor can prescribe entocort instead. It has a similar mechanism of action to prednisone but with vastly fewer side effects outside the GI tract because less gets into your bloodstream and the body rapidly breaks down what little does make it. However it is less powerful then prednisone and much more expensive.
04-25-2014, 03:45 AM   #10
Spootage
 
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Awesome I'll try that if I ever need to again. I dont think I could handle this again.
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