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Crohn's Disease Forum » Your Story » Hi Everyone


07-22-2012, 08:42 PM   #1
Peace_and_Charm
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Join Date: Jul 2012
Location: Suffolk County, New York
Hi Everyone

Hello All,

I am new to this site, my first Crohn's forum experience. I am 47 years old from NY, and have had Crohn's for 30 years. I have had most medical procedures you can have for this illness - 2 bowel ressectiosns (my first at 17, with a large abcess that created serious complications), excessive bleeding requiring a transfusion, multiple small bowel obstructions (too many to count, lol), a lot of ER visits for extreme pain, etc etc - things that many of us have experienced.

I am also in the process of getting divorced and am being treated for depression. I am here to reach out and meet others with "our problem", for mutual support and any help/advice I can provide. My surgeries were performed at a well-known hospital in NYC (both many years ago), by a well known surgeon who passed away years ago (bless him). I may know a thing or two by experience that may help someone, and would always love to learn from others as well.

I hope you are all well and am glad to be here. Peace to all.
07-22-2012, 09:02 PM   #2
Astrid
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Join Date: May 2012
Location: Nijmegen, Netherlands
Welcome. I am sorry you've had to deal with so many complications form your Crohn's. I hope you find lots of support here.
07-23-2012, 03:12 AM   #3
Angrybird
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Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Hello and welcome to the forum, am glad you have decided to join

How are you doing now - is the tummy settled or still acting up? Are you on any meds and if so which ones?

You have definetly come to the right place for lots of helpful info and support.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-23-2012, 09:04 PM   #4
Peace_and_Charm
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Join Date: Jul 2012
Location: Suffolk County, New York
Thank you, I hope you are well also.

In the past I have been on azulfidine, 6MP, prednisone, cipro and most recently Pentassa. Unfortunately nothing really worked with the possible exception of 6MP. I currently take no meds for Crohns and honestly have the same symptoms most of us have - fatigue, body/back pain, heartburn, bloating and nausea and stomach soreness.

My main issue is the narrow bowel at the point of anastomosis. I don't really merit taking remicade or any of the newer meds, because I don't think the inflammation has increased in years - it seems to be doing a slow burn-out with age, but quality of life generally sucks. I am at the point where I am really just seeking pain relief (stomach soreness, back pain and general arthritic type pain). After my next colononscopy I am going to ask my GI for some type of periodic narcotic medication. I am tired of going to the ER for the occasional morphine IV when I flare badly.

How about you?
07-24-2012, 01:36 AM   #5
Angrybird
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Was your doc aware that you had stopped taking your meds. Your symptoms indicate that the disease is active so I will be curious as to what the colonoscopy shows. Also why did you stop taking the 6-mp? Who told you that you don't merit the remi and other meds? When was your last scope done? If you have inflammation surely it doesn't matter that it hasn't gotten worse, it is still there and should be sorted for you.

Also have you ever looked at the diet side of things? I know that success has been found for some with enteral nutrition, the SCD diet etc. Check out our diet and sups forum for more info about these.
07-24-2012, 01:50 AM   #6
Scaryman
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Location: Atlanta, Georgia

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Peace and charm,


I just joined and want to welcome you. My question that I can identify with is stress, you mentioned your going through a divorce (imam sorry to hear that.) but as yor aware life changing stressful events and this chronic disease do not mix well. How are you managing the stress from that and everyday life without meds?

Hope that the knowledge and support here can help us all.
07-24-2012, 04:59 PM   #7
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome

With those symptoms and your resections, I'm curious when the last time you had your vitamin B12, folate, vitamin D, and magnesium levels checked, if ever? People with Crohn's, especially those with resections are often deficient in them and proper supplementation can completely alleviate some of the symptoms you mention if that is indeed the cause.

Again, welcome!
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07-24-2012, 06:42 PM   #8
Peace_and_Charm
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Join Date: Jul 2012
Location: Suffolk County, New York
Thank you all for your responses. I took the 6 MP for many years, and my GI was concerned about my white blood cell count, and stopped it. I agree with you all that my upcoming colonoscopy will determine next steps.

Having had this for 30 years, I definitely sense a change in course/severity. My feeling is that as my testosterone level has (naturally) dropped, the severity of acute attacks has diminished - leaving me in a state of low-level, moderate state of general low quality of life. if that makes sense. It feels like the disease is burning out, but as age kicks in, a different type of (more constant, less acute) discomfort exists. I am sure my divorce is exacerbating this. Maybe I am just tired of living with Crohns - like many of us may be.

Thanks all, you are such quality, caring people. If nothing else, Crohns builds character and compassion, doesn't it?
07-24-2012, 08:13 PM   #9
Scaryman
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Location: Atlanta, Georgia

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Thank you all for your responses. I took the 6 MP for many years, and my GI was concerned about my white blood cell count, and stopped it. I agree with you all that my upcoming colonoscopy will determine next steps.

Having had this for 30 years, I definitely sense a change in course/severity. My feeling is that as my testosterone level has (naturally) dropped, the severity of acute attacks has diminished - leaving me in a state of low-level, moderate state of general low quality of life. if that makes sense. It feels like the disease is burning out, but as age kicks in, a different type of (more constant, less acute) discomfort exists. I am sure my divorce is exacerbating this. Maybe I am just tired of living with Crohns - like many of us may be.

Thanks all, you are such quality, caring people. If nothing else, Crohns builds character and compassion, doesn't it?
Charecter and compassion and the willingness to help others.
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