Recently Diagnosed with crohns disease [HELP NEEDED]

[rop89]

I am sure you get many charity cases on this forum from people like me. But I am indeed seeking advice from anyone who is willing to give it

Summary of my Story (The facts):

• I am currently 19
• was diagnosed 1st of February 2016.
• Symptoms began in may 2015 (I was using, and possibly abusing anabolic steroids at the time).
• Had an MRI of the small bowl - uncompleted as I had an anaphlatic reaction the dye they use to contrast the image.
• Had a endoscopy of the large bowel which revealed a active inflammation at my terminal ileum.
• Also found 4 randomly located ulcers in my large bowel. Biopsies taken.
• Ulcerative colitis was ruled out after receiving colonscopy results.
• Had a barium follow through
• Admitted myself to hospital in December because of painful cramps - was diagnosed with crohns at this point and prescribed budesonide to reduce every two weeks.
• Symptoms improved, we are now at February the 1st where I finally saw a gastroenterologist for the first time and was diagnosed with crohns, due to my histology, and "rose thorn" ulcers found in my ileum indicated by my barium follow through. He sent a letter which said "probable crohns disease" though and he told me at my appointment they have basically ruled everything out and based off everything they have discovered, I have crohns.

Symptoms:

• Abdominal cramps
• Constipation more than diarrhoea (At worst bowel movements every 5 days, and best bowel movements every 3 days to every other day).
• Loss of appetite
• Weight loss (Went from 85KG to 65KG in two months, now currently stable at 60KG)
• Perianal abscesses which I have been admitted to hospital for twice for surgical drainage and could have potentially could have a fistula

Medications:

• Budesonide - my GI hates that medicine and so has taken me off it now.
• Pentasa - Basically a placebo, does not really do much for me.

My problem:

So as you readers will have learnt, I have obviously been recently diagnosed with crohns, so guys help me out! I have had one appointment with a GI so far. The NHS health system in the U.K is slow and rubbish so I have had to wait weeks and months for results, and it has been a long road to an actual diagnosis. When the hospital doctor prescribed budesonide for me it did work at reducing symptoms, I had bowel movements more often, barely got cramps, appetite was pretty good and was living a fairly good life. Pentasa is rubbish, I take 3 pills a day, and it does nothing really regarding improving symptoms. The thing is I am young, but I am starting to get a bit depressed. I'm now really skinny, I always was relatively skinny, but I was getting big from the gym before all this started and really enjoyed bulking and working out. My legs are basically two cocktail sausage sticks, no jokes and it's depressing. I always get tired, I am supposed to be studying for my exams attending school, and working a part time job. I'm scared of returning to work just in case I cannot cope. I find it difficult to religiously attend school because I am really tired and in pain a-lot of the time. I tried a pescatarian diet, because a guy who beat crohns disease did it in the book my dad got for me. I absolutely hated it, I love food too much. My question is I have a GI appointment soon in the next few weeks. What medicines should I ask for, he has done bloods for azathioprine which he said he will consider in the future. What really works, I don't want to lose any more of my life to crohns. I hide behind the disease to much, and use it so I can just procrastinate my life away. Come on guys how do I beat this. What medicines should I ask for, what treatments work! What foods shall I avoid, how can I put on weight? HOW CAN I GO BACK TO BEING A NORMAL 19 YEAR OLD BOY.

 

[Clash]

Azathioprine is an immunomodulator that has a long track record with CD. It works well for many people. I think in the UK you may have to try the immune modulators before moving to the biologics but if not remicade and humira work really well for CD.

 

[Ian_H]

I agree with Clash. I did the pentasa thing for a while with no help and eventually moved to Azathioprine. It worked great for a few years now onto Biologics (Remicade). Its all about what meds work for you. I know others who have worse symptoms than me and Pentasa works great for them. Hope you figure things out. It takes a little time to get use to this condition, but once you find your routine and medications that work you will be back to yourself in no time.

best of luck

 

[ronroush7]

If you haven't already, I would do a food dairy to see what foods aggravate your gut. I have had Crohns for twenty six years and they have to switch my medicine every few years. I have been on Pebtasa but it seems like it wasn't very long before they took me off

 

[Crohns and AS]

I wish the azathioprine didn't make me sick to my stomach and throwing up. My body didnt react well to it. I heard it is a good medicine but I was moved to mexotrethate injections once a week also on a decreasing steriod so far I am seeing relief.

Have they ran any blood work? My D3 levels were extremely low, my (I think it was called cpr test) shows inflamation levels in blood was 5 which was high normal was around .8. Iron was low also.

Start making a log of foods you eat and which cause you issues. For me things like popcorn, caffine, ruff grains, dairy, greasy foods, certain fruits or vegables etc I have to avoid.

I have learned over time with this disease to be vocal about all symptoms even if you don't think it is related to your stomach issues they oddly can be connected. If you don't think you are getting answers or happy with your treatment voice you concerns or get a second opinion. It's your body and life and we all react different to the symptoms and treatment.

Don't get depressed, easier said then done especially in an active flare. I was in remission for years living a normal life.