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Crohn's Disease Forum » Your Story » Can anyone give advice please ?


07-24-2015, 05:03 AM   #1
Hughes741
 
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Can anyone give advice please ?

Hi I am new to this forum and was wondering if anybody could give a bit of advice. I am going to a gastroenterologist in the next week or so on an urgent appointment as my dr and a&e staff suspect I have Crohn's . Over the past couple of years I have had several abscesses and a fistula which was treated with a seton . So far I have had 3 operations on this and during this time had stomach pains. Since the last op my abdominal pains have been much more severe and with black stools when I go to the toilet. I am constantly either constipated or have diahrea sorry if too much information. Does this sound like I could have Crohn's disease? And do people find it more manageable once diagnosed?

Thanks for reading
07-24-2015, 06:14 AM   #2
KimboHiggs
 
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Hi,
I was in and out of hospital for 12 years with abdo pain and only got diagnosed last year. From my own personal experience I have found that although mine hasnt got easier (they think it now affects my esophogus area - more investigation) it is easier to understand what is going on and they will hopefully be able to get you on the right medication that will hopefully manage your crohns!
They started me on pred and mesalazine asacol and they did settle me for a while but no 2 people with crohns are the same...
I really hope you get the answers and help you need!!

And welcome...
07-24-2015, 09:13 PM   #3
araceli
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Welcome to the forum. I hope your appointment goes well and you get a DX soon. Once you are diagnosed, you may have to try different kinds of treatments, until you find the one that works for you. The goal is to get in remission, once this is achieved, everything will be better. Best wishes. Let us know how it goes.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
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5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
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07-24-2015, 09:16 PM   #4
SarahBear
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Welcome to the forum!

Yes, it does sound like you could have Crohn's. And yes, it's of course more manageable after diagnosis! Once you know the cause of your problems, it can be treated.

What did the doctors previously suspect as cause of the fistula and abscesses? Have any tests been done to try to figure things out?

Don't worry - there's no such thing as TMI here! We all understand.
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Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

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07-25-2015, 02:05 AM   #5
Justanothercp
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Sounds like crohns is a possibility. Hopefully once diagnosed you can get on medication that works for you. (What are you currently taking?) and I would recommend really looking at your diet, there are a lot of people who have decreased symptoms with diet. Problem is different diets work for different people. So, may have to home through some trial and error. Personally I have found the Paleo diet quite helpful. But I lost weight on it, so if maintaining weight is an issue, may have to try something different. It is also difficult at first you really have to put in time and effort to get good at it.
Please note: diet is just a piece of the puzzle for me, I still take a fair amount of Meds.
Good luck. Keep us posted.
07-25-2015, 03:36 AM   #6
Hughes741
 
Join Date: Jul 2015
Welcome to the forum!

Yes, it does sound like you could have Crohn's. And yes, it's of course more manageable after diagnosis! Once you know the cause of your problems, it can be treated.

What did the doctors previously suspect as cause of the fistula and abscesses? Have any tests been done to try to figure things out?

Don't worry - there's no such thing as TMI here! We all understand.
Thank you everybody it sounds strange but it will be such a relief if it is Crohn's because I will finally have an answer of what is wrong . I have my appointment for the gastroenterologist on Tuesday where my doctor thinks they will do a pill camera test. Is this accurate for getting a diagnosis?

My doctors have previously put my abscess and fistula down to a skin infection and just gave me antibiotics. The first op they did they just laid it open but it came back within months so they operated again and put a seton in .

The only medication they have given me is in the last few weeks which is co codamol and buscopan which are pretty useless
07-25-2015, 04:58 PM   #7
SarahBear
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Thank you everybody it sounds strange but it will be such a relief if it is Crohn's because I will finally have an answer of what is wrong . I have my appointment for the gastroenterologist on Tuesday where my doctor thinks they will do a pill camera test. Is this accurate for getting a diagnosis?
That doesn't sound strange at all - I know that feeling very well! Many of us do.

Have you had a colonoscopy done? Generally, a colonoscopy (with biopsies) would be done first. If that shows nothing, a pill cam comes next, as it shows the small intestine, which can't be reached with a scope. If your symptoms and previous tests indicate disease activity would be primarily in the small intestine (and black stool does suggest this), starting with the pill cam makes sense, but is still a bit out of the ordinary. It's not necessarily a bad thing, as long as that decision is being based on your personal situation.
07-25-2015, 06:03 PM   #8
Hughes741
 
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Yes they said they had done a colonoscopy on my first operation about 2 years ago
07-25-2015, 07:01 PM   #9
SarahBear
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Yes they said they had done a colonoscopy on my first operation about 2 years ago
Two years is quite a while - you're probably due for another one. A lot can change in that time. Did they do any biopsies when they did that scope?
07-26-2015, 04:28 AM   #10
Hughes741
 
Join Date: Jul 2015
No it was just a colonoscopy with a laying open of a perianal sinus which was later diagnosed as a fistula as it came back within months . They have never really shown any signs that they were trying to discover the cause. It is only recently since I got a new doctor that I have been referred to a gastroenterologist and she did that just off looking at my history notes.
07-28-2015, 04:02 AM   #11
Hughes741
 
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Just had something new last night I started vomiting red blood is this another symptom of Crohn's or could it be something else ?
07-28-2015, 07:21 AM   #12
Lisa
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If you are vomiting blood you need to get to an emergency room, especially if it is a new symptom!

It is NOT normal and can be a sign of a very serious issue!
07-28-2015, 02:46 PM   #13
Hughes741
 
Join Date: Jul 2015
Just back from the gastroenterologist she said she wasn't concerned by the vomiting blood or the black stool it's nothing to worry about . She has booked me in to be put to sleep and to do a colonoscopy with biopsies plus a camera down my throat too while I'm under. Then a couple of weeks later she has put me down for an mri scan where I need to drink a liquid not sure what this one was for ??
07-30-2015, 09:06 AM   #14
Madhu
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Just back from the gastroenterologist she said she wasn't concerned by the vomiting blood or the black stool it's nothing to worry about . She has booked me in to be put to sleep and to do a colonoscopy with biopsies plus a camera down my throat too while I'm under. Then a couple of weeks later she has put me down for an mri scan where I need to drink a liquid not sure what this one was for ??
It must be barium sulfate? My husband had that to drink before his MRI. It helped determine the severity of his Crohn's. They did an MRI for his abdomen and pelvic area. Hope you feel better soon.
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

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