Share Facebook
Crohn's Disease Forum » Your Story » Recently diagnosed :(


02-22-2017, 04:46 PM   #1
nuffz
 
Join Date: Feb 2017
Location: Worcestershire, United Kingdom
Recently diagnosed :(

Hi! I'm 25 and recently diagnosed with Crohn's in September last year after years of related problems. I was hospitalised in October with a partial constriction, i spent 5 days their on steroids and drips with all sorts of potions pumped into me. I'm currently on 30mg Prednisone, 4grams Mesalazine (salafalk) 100mg of Azathioprine 40mg of Esomeprazole, adcal tablets and a sachet of Questran. The main problem i still have is the crippling fatigue, muscle and joint pain. how do you guys get around this? do you take iron tablets or anything similar? My GP told me thats its part and parcel with the crohns and told me to keep up the pressure on my GI specialist when i next see her. Also with all these drugs I'm talking why hasn't the pain in my abdominals gone yet? I still feel largely the same as before i was diagnosed. thanks for the help in advance
02-22-2017, 05:14 PM   #2
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
Hi there and welcome. Sorry to hear about your troubles, it's really tough I know but it can only get better!

The fatigue you refer to is very familiar! Where is your inflammation located? Mine is all small bowel so really affected my iron and b12 levels.

My GP actually checked these and got me on iron supplements and B12 injections soon after diagnosis. I'm surprised your GP hasn't actioned this for you before you see a GI? Maybe mine is the exception.

Both of those made a huge difference to the fatigue for me. The B12 took about 2 weeks from the loading dose and the iron was a couple of months.

Hope you feel better soon, take care!
__________________
Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-22-2017, 05:17 PM   #3
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
Unfortunately azathioprine, the main drug you are on to get you into long-term remission can take 6 months to take effect. I was properly diagnosed a year ago after years of symptoms as well. I am dealing with fatigue and pain on my right side most days despite being on azathioprine since April. I too was on prednisone to start with as well but that did nothing for my Crohn's symptoms, which is very unusual. It can be a trial and error with Crohn's medications to see what ones are right for you. There are many users on these boards who are in remission for years from azathioprine. Give it some time, your bowel is badly inflamed and healing will take a while with the azathioprine taking a while to work as well.
02-22-2017, 05:19 PM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. Have you been to a rheumatologist about the joint pain? I was on b12 shots for a while because i was anemic. You probably need blood work if you haven't already. As far as the abdominal pain, you may need something stronger . I agree with your gp.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-22-2017, 05:22 PM   #5
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
True, I started azathioprine in September last year but it's only really the last 6 weeks or so I'm noticing an improvement. Give it time but don't suffer unnecessarily either. Maybe ask about some stronger pain relief, I find hot water bottles, heat patches and long baths help!
02-22-2017, 05:39 PM   #6
nuffz
 
Join Date: Feb 2017
Location: Worcestershire, United Kingdom
Thanks for the fast replys I have seen the GI 4 times and she just said the pains and fatigue should improve when I enter remission. Not great advice really as I'm informed it can take months if not years for this to happen. I have blood tests every week and they are always stable. My gp said the GI should up the aza pills but wasn't something he could do all he did was raise the preds again as I was flaring bad at the time. The fatigue is a real killer and I can struggle to eat a meal from the aches I get in my jaw when eating or the pains from joints when I'm working. I'm fed up with this disease already just glad i finally have a name for it instead of going to the toilet and leaving a load of blood and telling my self it happens to everyone and will get better 😕
02-22-2017, 09:57 PM   #7
dave13
Forum Monitor
 
dave13's Avatar
 
Join Date: Dec 2013
Location: Maine

My Support Groups:
I find the fatigue to be most annoying. I use a D supplement that helps. http://www.crohnsforum.com/wiki/remission
__________________
"It does not do to dwell on dreams and forget to live."
02-23-2017, 03:02 AM   #8
nuffz
 
Join Date: Feb 2017
Location: Worcestershire, United Kingdom
Hi there and welcome. Sorry to hear about your troubles, it's really tough I know but it can only get better!

The fatigue you refer to is very familiar! Where is your inflammation located? Mine is all small bowel so really affected my iron and b12 levels.

My GP actually checked these and got me on iron supplements and B12 injections soon after diagnosis. I'm surprised your GP hasn't actioned this for you before you see a GI? Maybe mine is the exception.

Both of those made a huge difference to the fatigue for me. The B12 took about 2 weeks from the loading dose and the iron was a couple of months.

Hope you feel better soon, take care!
I'm the same small bowl 😯
02-23-2017, 10:58 AM   #9
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
Are you anemic? What is your hemoglobin level? The iron tablets will help with the fatigue only if the fatigue is caused by anemia. Anemia is certainly a very common symptom with Crohn's, but Crohn's itself can also cause fatigue directly, independent of anemia. Or you could have both.
Reply

Crohn's Disease Forum » Your Story » Recently diagnosed :(
Thread Tools


All times are GMT -5. The time now is 02:42 PM.
Copyright 2006-2017 Crohnsforum.com