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06-06-2014, 10:18 AM   #1
jonnyzero
 
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I'm new here, here's my story....

Hi, my name is Jim and this is my story. I'll try and be brief, but there's a lot to tell. I found this forum while searching for answers that my doctor could not provide. My story is mainly about my misadventures within our medical system. I was diagnosed with Crohn's in Jan. of 2005, after several years of severe bouts of gut pain. My family doctor finally decided to send me to a GI doc for a colonoscopy. It was not a good experience,as he seemed to be in a hurry and was not very pleasant. He found nothing wrong. The gut pains persisted for a couple more years until the worst one caused me to visit the ER, as I was puking up green stuff. I was admitted on a Friday, and finally got to see a real GI doc on Monday. He said he would have seen me over the weekend, but no one called him.
Upon discharge I was told to call his office for an appointment. When I saw him he set up a date for a colonoscopy. That's when the Crohn's was finally diagnosed. He put me on prednisone and Asacol and everything went fine for several months until I ended up back in the hospital. Another colonoscopy with a baloon dilation because my small bowel had a "pinhole" stricture. I ended up having surgery in Jan. 2007.
At the pre-surgery consult with the surgeon, he was unsure why I was there, as no one had sent him my records. The surgery removed the part of my gut that absorbs some vital nutrients like B12, vitamin D and other good stuff. Somehow I was never informed about this, and about a year later I ended up seeing a Neurologist for balance (ataxia?) issues and cognitive issues. Bloodwork found severe B12 and Vitamin D deficiencies which caused lasting damage. After the surgery, the Crohn's settled down a bit but never really went into remission. My doc tried me on a succession of different meds, Pentasa, 6-mp, Remicade (bad reaction), Cimzia (bad infection). All this time I was still on prednisone as "maintenance therapy". Unfortunately, no one informed me of the dangers of long term steroid use, and I am still trying to get off of it, with little hope of success.
Sometime after the surgery, I started having flu-like symptoms about once a month. Body aches, brain fog, extreme fatigue and other stuff that would land me in bed for several days at a time. Over time this condition would happen more and more frequently until now when I'm getting it every other week and sometimes more often. Twice in the last two weeks. My GI doc says it's nothing to do with Crohn's. I've seen four different specialists at Cleveland Clinic and gotten four different answers. "probaly Crohn's related" "it's the prednisone, get off the prednisone" "possibly a mood disorder" "I don't know". This condition is not in their textbooks, so they don't know what it is. And no one seems willing to dig deeper to find out. This is the main reason I am here. I can't be the only person on the planet with this. I was hoping to find someone who experiences the same issues, and hopefully find out what it might be. If this is the wrong place to ask this, please direct me to the proper part of the forums.
I feel like I've fallen through the cracks of the medical system, and am getting very discouraged......I'm glad I found you, and I hope to be able to contribute, even in a small way.
06-06-2014, 10:29 AM   #2
scottsma
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Hi Jonny and welcome to the forum.You've really been through an awful lot of unpleasantness.I personally can't help you,but there are many good people on here who will be along soon to help.I'm sorry you had to seek us out in the first place,but now that you're here you'll get lots of help and support.Best Wishes.
06-06-2014, 01:04 PM   #3
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Hi Jim, welcome to the forum. I'm sorry you've had such a horrible time of it.
Some people with Crohn's also have fibromyalgia. I don't personally have experience with it, but it's worth investigating if you have similar symptoms.
There are links here for drug trials that may be worth a try as well, if nothing else has worked for you. Hang in there.
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06-06-2014, 03:23 PM   #4
jonnyzero
 
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Thank you, scottsma and Tuff.
06-06-2014, 07:34 PM   #5
DJW
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Hi Jim and welcome. Geez you've really been through the ringer.

I've been in a flare for a while. Every couple of weeks I'm laid out with bad joint pain and severe fatigue (I always have fatigue but it gets worse). I've talked to the specialist and it's part of the flare. I do get brain fog - I find fatigue can cause it. It can also be a symptom of depression which wouldn't be unusual if your sick and tired all the time.

I hope you start feeling better soon.
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06-07-2014, 01:13 AM   #6
gotumtum
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Hi Jim

Just wondering if atypical migraines could be part of the picture for you? My migraines don't always result in headaches, but sometimes the brain fog is so bad that I have trouble talking? For me my migraines are always much more frequent when my Magnesium is low, which may be another factor for you.

Best of luck
06-07-2014, 04:32 AM   #7
jonnyzero
 
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Hi Jim and welcome. Geez you've really been through the ringer.

I've been in a flare for a while. Every couple of weeks I'm laid out with bad joint pain and severe fatigue (I always have fatigue but it gets worse). I've talked to the specialist and it's part of the flare. I do get brain fog - I find fatigue can cause it. It can also be a symptom of depression which wouldn't be unusual if your sick and tired all the time.

I hope you start feeling better soon.
Thanks for the info. I don't get the bad joint pain, but I certainly do get the fatigue and brain fog. But I know now that everyone's symptoms are a bit different. Is there anything that you do to alleviate the fatigue and brain fog?
06-07-2014, 04:38 AM   #8
DustyKat
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Hi jonnyzero and

I am so sorry to hear of all you have been through and continue to go through.

What medications are you on at present, including supplements?

Dusty. xxx
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06-07-2014, 08:54 AM   #9
DJW
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Thanks for the info. I don't get the bad joint pain, but I certainly do get the fatigue and brain fog. But I know now that everyone's symptoms are a bit different. Is there anything that you do to alleviate the fatigue and brain fog?
It sound counter-intuitive but I try and talk a walk everyday. Sometimes I can do a long one, sometimes 10 min is all I have in me.

Have you had blood work done to check for anemia and vitamin and mineral deficiencies?

I'm regularly checked for B12, Vit D and anemia.
06-07-2014, 09:01 AM   #10
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Thanks, DustyKat. Presently the only medication I am for Crohn's is prednisone. My doc wants me to try 6-mp again or Humira. I would rather stay away from the Humira if possible. I'm also taking Lamictal for depression and Ferrex for anemia.
As for supplements I am taking 4000 iu of vitamin D a day, monthly B12 injections as well as daily oral B12, 2000mg fish oil, a vitamin B complex, and calcium supplements (osteoporosis)

Last edited by jonnyzero; 06-07-2014 at 09:19 AM.
06-07-2014, 09:07 AM   #11
jonnyzero
 
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It sound counter-intuitive but I try and talk a walk everyday. Sometimes I can do a long one, sometimes 10 min is all I have in me.

Have you had blood work done to check for anemia and vitamin and mineral deficiencies?

I'm regularly checked for B12, Vit D and anemia.
In between the spells of fatigue, I walk as often as possible. When the fatigue spells hit, I don't have the energy to walk a straight line.

Yes to the anemia........
06-07-2014, 02:27 PM   #12
nikimazur
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Depending upon where you are in PA, I have a fantastic GI in the Philly area that I would highly highly recommend. He is a comprehensive, and thorough GI, and refuses to let anyone fall through the cracks. I myself saw three different GIs before him and felt at a total loss.
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06-07-2014, 04:51 PM   #13
DustyKat
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Do you know your numbers when it comes to B12 and Vit D?

Have you had blood drawn for Iron Stores, Folate, Magnesium and Zinc?

Dusty. xxx
06-08-2014, 06:09 AM   #14
jonnyzero
 
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Depending upon where you are in PA, I have a fantastic GI in the Philly area that I would highly highly recommend. He is a comprehensive, and thorough GI, and refuses to let anyone fall through the cracks. I myself saw three different GIs before him and felt at a total loss.
Thanks, but I'm in Northwestern PA
06-08-2014, 06:13 AM   #15
jonnyzero
 
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Do you know your numbers when it comes to B12 and Vit D?

Have you had blood drawn for Iron Stores, Folate, Magnesium and Zinc?

Dusty. xxx
Dusty, my last B-12 was 878, vit D was32, ferretin-29

I do not know the numbers for Folate, Magnesium and Zinc
06-08-2014, 06:30 AM   #16
DustyKat
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Thanks for those.

Vit D could be double that, in my opinion, when was it taken and how long have you been on 4,000iuís?

B12 is good.

Ferritin is okayish. Do you have full Iron Stores as it would be interesting to see this number in the context of the others.

You may not have had the others done and if that is the case I would request that they be done.

Dusty. xxx
06-08-2014, 07:08 AM   #17
jonnyzero
 
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Thanks for those.

Vit D could be double that, in my opinion, when was it taken and how long have you been on 4,000iuís?

B12 is good.

Ferritin is okayish. Do you have full Iron Stores as it would be interesting to see this number in the context of the others.

You may not have had the others done and if that is the case I would request that they be done.

Dusty. xxx
I've been taking 4000 since February 25 when it was 24.3, it was checked again on 4/16 and was 32.9

I'm not sure what "full iron stores" is vs. ferretin.
I have a result For Iron+TIBC that lists iron at 53 in a range of 30 - 140


That same test shows TIBC at 316 in a range of 210 - 415
Transferrin Saturation 17 out of 11 - 46 %
I'm not sure what these last two mean......

Hope this helps......

I will request that the others be done. What would results of the other tests imply ?

thanks so much for your help.
06-08-2014, 07:29 AM   #18
DustyKat
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It is good to see the Vit D is heading in the right direction.

The other numbers you have listed make up your Iron Stores and they look fine.

Magnesium and Zinc are often deficient in small bowel Crohnís too and low levels can cause sluggishness/fatigue, confusion, irritability, amongst other things. So I am wondering if any of these things are playing a part in your symptoms.

Have a look at the wiki article we have on Vitamin and Mineral deficiencies, it is loaded with info:

Vitamin and Mineral Deficiencies

What are you bowel motions like, how often do you go?

Dusty. xxx
06-08-2014, 07:47 AM   #19
jonnyzero
 
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It is good to see the Vit D is heading in the right direction.

The other numbers you have listed make up your Iron Stores and they look fine.

Magnesium and Zinc are often deficient in small bowel Crohnís too and low levels can cause sluggishness/fatigue, confusion, irritability, amongst other things. So I am wondering if any of these things are playing a part in your symptoms.

Have a look at the wiki article we have on Vitamin and Mineral deficiencies, it is loaded with info:

Vitamin and Mineral Deficiencies

What are you bowel motions like, how often do you go?

Dusty. xxx
Actually, I've always considered my Crohn's to be in the "moderate" category as far as gut symptoms are concerned. I do have the narrowing and strictures, but hardly ever experience what I consider to be real pain like a lot of other folks. For a long time I simply considered it as a major inconvenience compared to others. It's these other symptoms that are really dragging me down.......

Last edited by jonnyzero; 06-09-2014 at 01:12 AM.
06-08-2014, 07:57 AM   #20
DustyKat
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Where exactly are you at with your Crohnís now?

When was your last scope and imaging done?

Dusty. xxx
06-08-2014, 09:04 AM   #21
jonnyzero
 
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Where exactly are you at with your Crohnís now?

When was your last scope and imaging done?

Dusty. xxx
My last CT scan was 1/16/14

"Impression:
1. Mild thickening of the wall terminal ileum consistent with the
patient's history of Crohn's disease. There also appear to be
postoperative changes around the cecum which are unchanged"

My last scope was 2/13/14 at which time a balloon dilation was performed because of narrowing of the area where the Crohn's is active.
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