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Crohn's Disease Forum » Your Story » New and looking for guidance


07-05-2014, 10:19 PM   #1
Nikkinyxx
 
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New and looking for guidance

I was recently diagnosed with a severe case of Crohn's disease. My mother has it and the doctor believes that mine is due to that. Previously, I had been experiencing on and off again stomach and intestinal inflammation accompanied by loose bowel movements and then constipation. My doctor felt I had intermittent IBD, but I did not get a colonoscopy at that time because I was young and scared. Now I wish I had. Three years after that incident I began having daily abdominal cramping and painful bowel movements. I finally got health insurance and went to a specialist. After having a colonoscopy, they discovered the Crohn's. My diet before the diagnosis was mostly eating fruits, chicken and vegetables with whole wheat products. Now I eat very little, mostly chicken and pasta. Since 2013 I have lost 80lbs, going from 310 to 230. Not all of that was due to sickness, as I was being more active in an attempt to get better. Within the last 2 months, my Crohn's has put me in the ER twice and the hospital once (for a week, with what they called an exacerbation of Crohn's). At this point I have stopped eating red meats, pork, lamb, whole wheat products, soy products, lactose products( born intolerant), spicy foods, fried foods, greasy foods, raw fruits & vegetables, caffeine products, carbonated products and chocolate products. All of this in an effort to get the abdominal cramping and severe bowel movements to lessen. I attempted to get Humira but my insurance declared it to be an "experimental drug" and refused 3 times to pay for it, even after a peer-to-peer with my specialist. So I am taking a 3/4ths dosage everyday of Mercaptopurine ( I am supposed to be on 100mg but am slowly working up, at 75mg now). My questions are as follows: How often do the flare-ups happen? Is there some point where I can re-introduce foods back into my diet? Is hair thinning and/or loss normal when taking Mercaptopurine? Is daily cramping of the upper abdomen normal? Is there a way to deal with the depression which happens as a result of the condition without medication? Thank you so much for reading this and for any replies. ^_^
07-09-2014, 12:32 AM   #2
araceli
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Hello and welcome to the forum. I am sorry you are not feeling good. Everybody is different, In my daughter case, she only had two mild flare ups in 3 years, due to medicines not working. I don't think any cramping is normal. Spicy, grease and fried foods is something we avoid. Talk to you GI about remicade and the remi star program. I hope you can get medication soon and start feeling better.
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07-09-2014, 08:42 AM   #3
jamesmom
 
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My son was diagnosed last month. They put him on Budesonide, Mercaptopurine and Colazal. I thought mercaptopurine was a maintenance medication and it takes a couple of months for it to build up in your system, so you won't get any relief from that for a while. The budesonide is a corticosteroid like prednisone and is supposed to work pretty quickly. If I were you, I would ask the GI for something to alleviate symptoms right away. Hope you feel better soon.
07-09-2014, 09:56 AM   #4
valleysangel92
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Hello and welcome to the forum

Im sorry to hear that you are struggling right now I hope you can find some relief soon. I'm not in America, so I dont know much about the different insurances etc, but I think I've heard that there are programmes to help people get access to drugs like Humira if they don't have insurance or if the insurance they have doesn't cover it.

To answer your questions -

The frequency of flare ups differs for everyone. Crohns is a very individual disease. Some people will flare every few weeks, others will flare once a year, others will go a decade without flaring. The aim of treatment is to prolong the gap between flares as long as possible. You can go from severe crohns to long, sustained remission with the correct treatment and long term management. Don't get stuck on what everyone else is dealing with, they are not you and your body is different to theirs. Doctors have a tendancy to be very general when they talk about these things, but when it comes to crohns there is no general. You have to learn what applies to you. I know that might not be what you want to hear right now, but you will get the hang of this and it will seem easier when you have a proper treatment plan that works for you.

As said above, mercaptopurine is a maintenance medication and does take some time to build up and have the full effect, so you might need a short course of steroids to bring things under control in the mean time.

Diet is again something that is very individual. I would advise keeping a food diary, keep a record of what you try, and record how you feel after. If you have worse symptoms after the same food 2-3 times then you know that food doesnt agree with you right now, then give it a few weeks and maybe try again. There may be some foods that will only affect you when you're really sick, others that only effect you when your flaring and potentially some you can't really tolerate at all. Its all a learning curve and its about working out what your body can and can't handle. You might want to check out the diet and fitness section for more diet advice and tips.

Ive never taken that medication, but I have heard other people talk about hair loss when taking it, so its not unheard of. Talk to your doctor about it if its distressing you.

As for the cramps, no they are not normal. They are a common symptom of crohns, but they are a sign that something is not quite right and you need to make sure your doctor is aware of them. They could give you an anti-spasmodic like buscopan to help ease them. It can be a sign of food struggling to get through or any number of things, so make sure you do mention it. Pain is never 'normal' and you do not have to get used to it.

Its common to feel depressed when diagnosed with such a big condition, it can feel like your life will never be the same again. Try to rememeber that this is temporary, yes you will have this condition for the rest of your life and you do have to take it seriously, but it isnt a death sentence and you CAN have a full and happy life with it. Once your medications start working and you suss out what works for you lifestyle wise you should start feeling a lot better and that should help your mood too. If you feel the need to you could always ask to see a counsellor, who can help you talk about whats happening and find ways to come to terms with it. We will also always be here if you need to rant or vent, we all know how it feels and its ok to want to cry or shout about it sometimes.

Crohns might win a few battles, but you can win the war.
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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
07-04-2015, 06:30 PM   #5
Nikkinyxx
 
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Sorry for such a long time between updates. I have been hospitalized multiple times since my last post. I have had my Mercaptopurine to the full dosage, which then went toxic inside my body and made me quite ill. They have now put me on Humira. my insurance has agreed to pay for it for one year thankfully. So I am doing slightly bit better. But I still feel anxious.
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