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Crohn's Disease
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Posted 6/26/2017 12:23 PM (GMT 0)
Hi all, I have a quick question. I first got sick in December with bloody diarrhea and cramps that only lasted a week. My calproctecin levels were greater than 6000 "the highest it goes" colonoscopy showed inflammation. They couldn't visualise small bowel. Biopsies taken which showed acute inflammation and no evidence of crohns disease. I then had an MRI beginning of June which came back fine. Wen I saw the consultant for my MRI results he seemed abit baffled. I also redone my calproctecin test which I showed him and he then said its reassuring and he thinks I had a severe infection as my calproctecin levels were less than 15. He said he don't think I have crohns as I wouldn't of got sick for 1 week for it to suddenly disappear. My question is my sister has just been diagnosed with a autoimmune disease but she won't tell me wat one it is because she don't want to talk about it. She said it's along the same lines as crohns but its worse and its a rare disease. Even though I had a normal MRI and biopsies didn't show evidence of crohns could the fact that my sister has now been diagnosed with an autoimmune disease could this change my diagnosis? He asked about my family history and at the time I said theres no family history. Is it possible that I was in remission at the time of the MRI? I don't see point of seeing my gp as I'm not currently sick so any tests I have will be normal. It seems odd that I got sick and 6 months later my sister got sick. Do I just wait to see if I get sick again or see my doctor.

Thanks
Posted 6/26/2017 2:47 PM (GMT 0)
I think you should wait to get sick again. If you are in remission, your tests will come out normal and you'll be wasting your time and money. If it is Crohn's it will come back, and then you can deal with it. Family History is just one piece of the puzzle, but not enough by itself to cause a doc to treat you
Posted 6/26/2017 5:28 PM (GMT 0)
Thanks gumby for your advice. I'll wait and see wat happens. At the moment I have had loose stools twice a day but I suppose this could be normal. I do I just hope if I do get sick again I get the tests done quickly as I didn't have my MRI until may 5months after I got sick. Thanks xx
Posted 6/26/2017 11:34 PM (GMT 0)
I'm going to call rubbish on this.

My question is my sister has just been diagnosed with a autoimmune disease but she won't tell me wat one it is because she don't want to talk about it. She said it's along the same lines as crohns but its worse and its a rare disease

She's lying. God knows why, but nothing about that rings true.

Here is a list of autoimmune illnesses which affect the digestive system. There's only a few of them and none of them are worse than Crohn's. Apart from autoimmune enteropathy and that tends to begin in infancy. Definitely none of the others are any worse.

/en.wikipedia.org/wiki/List_of_autoimmune_diseases#Digestive_System

So yeah, it's almost guaranteed that your sister has been lying, I'm sorry. She's not giving you the name of the illness because she either doesn't know what it is or she does know what it is but it's not what she claims it is, i.e. an ultra-rare autoimmune disease that resembles Crohn's. I dunno what your family dynamics are like, but it's not normal behaviour to tell your family you've got a super rare disease but you're not gonna tell them what it is, so ner. Something else is going on here; something that's nothing to do with Crohn's or Crohn's-like diseases.

Also, no medical professional will take on board a family history where you can't name the disease - "autoimmune disease" isn't a disease, in much the same way "red spots" isn't a disease.

Post Edited (NiceCupOfTea) : 6/26/2017 6:24:19 PM (GMT-6)

Posted 6/27/2017 7:17 AM (GMT 0)
My sister is on the paelo diet. Yes I agree. I don't understand why she can't tell me the name and even I thought she was perhaps playing on it. I don't know why. She has an MRI in 2 weeks. Thanks for reply nice cup of tea. Its funny that yiy thought the same as me but I had to give hervyhe benefit of doubt as she definitely does the paelo diet and has lost weight. Maybe its not as bad as she says
Posted 6/27/2017 9:24 PM (GMT 0)
Weight loss isn't necessarily a symptom. If you take in fewer calories, then you will start to lose weight. Paleo diet is quite an easy diet to lose weight on, 'cos it cuts out so many potential sources of calories.

Anyway, I hope you can sort it out with your sister. Not sure what to advise, really. But yeah, until she tells you what she has, I would take anything she has to say about her health problems with a pinch of salt. If she's still having tests it sounds like they're still in the investigating stage.
Posted 6/30/2017 1:33 PM (GMT 0)
Hi she's had the tests already. She said she's having MRI to see how severe it is but I did see a few books at her house on bowel inflammation and autoimmune diseases wen I was there yesterday. She wasn't feeling well so there is something. I just dont understand why she can't say wat it is. Shes not on medication due to the side affects it can cause. Its a mystery.
Posted 6/30/2017 1:39 PM (GMT 0)
It's just odd that we both got sick so I'm wondering whether mine was an infection as the consultant said or crohns.
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