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Crohn's Disease Forum » Your Story » Hi I'm new to all this..


05-10-2014, 10:37 AM   #1
Crohns11
 
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Hi I'm new to all this..

Hi I'm new to all this, I was diagnosed with Crohn's 2years ago, I've had several flares ups over the years,I was admitted to hospital in March with a localised illeus, which took several attempts to find with different drs, I'm on 150 mg azathioprine, 75micrgrams levothyroxine for a under active thyroid, also my vitamin d is low, ? B12 as not had a blood test lately. I'm finding it hard with the tiredness. My problem at the min is I'm scared of getting the localised illeus again as my professor says it will come back again, I had a laparoscopy to find out if scar tissue was causing it? But found out it wasn't, I had a really bad experience in hospital so I was glad when I came home, 8 weeks on I'm still getting pain etc and I suffer with chronic constipation. But I'm too scared to contact my professor or ibd nurse ... Any one can help ?


05-10-2014, 11:28 AM   #2
Daisy123
Senior Member
Hi, I am rather old at all this, having been diagnosed 30 years ago. I haven't had ileus myself but rather multiple strictures. I am also on Azathioprine 150mg in combination with Pentsa, which keeps things in check most of the time. My advice is not to ignore things, constipation can be quite dangerous if you leave it as there is a possibility of becoming obstructed. Ring the IBD nurse, she can bring your appointment forward. The one thing I have learnt is you must be proactive. Let me know how you get on.
05-10-2014, 02:52 PM   #3
Crohns11
 
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Thank you for the advice, I have had several x rays that show I'm constipated, even tho some days I would have a bowel movement of up to 20 times. I have a lot of pain on my right side, I'm taking 30 ml of lactulose and 2x 100 mg of ducosate a day . I will ring ibd nurse on Monday .


05-11-2014, 05:34 AM   #4
valleysangel92
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Hello, welcome to the forum

Have you had any treatment for the low vitamin D? That could be contributing a fair amount to your tiredness, I'd also ask them to look at your iron levels.
I understand that this is scary , but please don't let that stop you asking for help. Crohns is a sneaky condition and it will wreak havoc if it's not properly treated.

I used to get problems with constipation almost constantly, made worse by a stricture. Hopefully your professor will be able to suggest something to help you deal with it, I know it can be very painful.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-11-2014, 09:02 AM   #5
Crohns11
 
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Thank you for advice, I've had vitamin d injections last year 2013, then in 2012 I had vitamin b12 injections, I'm now taking calceous tablets twice a day. I've lost all faith in my professor and ibd nurse since I last went in hospital , but I will book appointment for a blood test to be done ASAP, thank you both for ur advice.


05-11-2014, 09:08 AM   #6
Daisy123
Senior Member
You do realise you can get a second opinion? I was initially with my local hospital, but had a bad experience. I am now at a specialist hospital, which is one of the leading hospitals in the world.
05-11-2014, 09:10 AM   #7
valleysangel92
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If you aren't happy with the care you are receiving then you have every right to ask to see someone else. Substandard care isnt something we have to put up with.
05-11-2014, 09:22 AM   #8
Crohns11
 
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The city I live in there are two specialists , one in each hospital, my professor is good, but recently just lost faith because of my bad experience , I will have to go soon as sometimes the pain gets really bad.


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