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11-16-2012, 03:48 AM   #1
hammykins
 
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Confused?

So, to introduce myself, my name is Heather. I have been struggling with what I thought was IBS. I usually have pretty bad constipation. But I get these horrible attacks of diarrhea that causes crazy pain and i have like 4 or 5 bms in a row. It seems to be getting worse and cutting out certain foods hasn't been helping. I have been getting lower abdominal pain a lot more frequently. I also have lots of mucus in my stools. I finally decided to see a GI and I have very low vitamin D. Chronically High CRP and sed rate levels. I also have on and off low vitamin B12. What brought me into the GI's office was like darker than usual, soft stool. But it had like a red tinge to it. My GI dr thinks I might have Crohns, but I am confused. I have alternating constipation and diarrhea which I thought were hallmark signs of IBS. He said normally he doesn't schedule colonoscopies for people my age (I am 21), but it doesn't really sound like ibs to him? I have to wait a month to have it and I just feel like it is going to be for nothing? I don't really know what to think?
I have been tested for lupus and various arthritis because I also have chronic pain, which I now see could be from low vitamins. i have had x rays in my knees and ankles. Also for a back injury. They all come up clean. Any thoughts? Thanks
11-16-2012, 07:56 AM   #2
dannysmom
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I am glad the doctor is doing a colonoscopy. With your bowel issues and high inflammatory markers in your blood, it would be negligent for a doctor not to scope. Good luck! I hope you can get some treatment and feel better soon.
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11-16-2012, 08:12 PM   #3
Cat-a-Tonic
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I agree with Dannysmom. A scope is a good place to start - IBS would NOT cause raised inflammation levels like that. As for the joint pains, that could also be down to inflammation. With things like Crohn's or colitis, sometimes the inflammation in the bowel can "spill over" into other areas of the body, such as the joints, skin, eyes, etc. At any rate, a scope will be very good to have, and I hope you get some useful answers out of it so that you can get some treatment and relief. Good luck and keep us posted! And, welcome to the forum.
11-16-2012, 08:56 PM   #4
hammykins
 
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Yes I would really like some answers but I can honestly say I am very scared and will be very upset if I have it. I wish I didn't have to wait and I could have it sooner!
11-19-2012, 08:28 PM   #5
David
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I agree with the others. With everything you're saying, I'm VERY glad you're getting a scope done, it is definitely not for nothing. Hopefully it's not inflammatory bowel disease but I think there's a decent chance it may be I know it's upsetting and scary, but the important thing is getting a diagnosis, whatever it may be. And we're here for you anytime you need us.
11-22-2012, 03:40 AM   #6
bozzylozzy
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Hi Heather, im sorry you're in an awkward position. many can sympathise.. and the colonoscopy is te right way to go!

In terms of your joint pain.. i saw a fantastic rheumatologist who sent me for a bone scan (isotope scan) which looks at areas that are repairing more than usual. They inject you with radioactive phosphate.. your bones constantly use phosphate to repair themselves. so if an area is is found to have a higher uptake of the radioactive phosphate.. means that area (such as your knee) has something going on

Might be worth mentioning that scan.. seems as your xrays were normal?
Make sure you keep us updated. all the best! X
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11-22-2012, 07:29 AM   #7
mbishop
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Good luck with the scope - if nothing else it will allow you to exclude certain possibilities. I have Rheumatoid Arthritis along with Crohns - many folks have co-morbid autoimmune disorders. Constipation can be caused by drugs or diet, even with Crohns. As noted above, the CRP elevation is an indication of some time of inflammatory issue and not the IBS.
11-26-2012, 06:54 PM   #8
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Hi, I hear you, the fear is real. I hope reading posts on this site does not scare you more. I'm not normally a fountain of reassurance because I have been living with Crohn's since I was 17. Back then there was very little that doctors could do, and they would often dismiss my pain or symptoms. Now that I have accepted it, life is easier. You can't wish it away, try as you might. If there is something else causing all of this, maybe there is a cure for it, but I wouldn't put all my hopes in that. It's time to be strong, and educate yourself by reading more about it. You have to take responsibility for yourself because no one else will, although people will try to help and you will need all the help you can get to get through this. Good luck. I don't mean to be a downer, sorry that you are going through this.
11-26-2012, 11:28 PM   #9
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No I appreciate the honesty. I would rather hear that then what many people think is helpful(it's not the end of the world, at least you aren't dying. Etc.) I already know it could be much worse but that doesn't mean I'm not suffering. If I do have this thing I'm going to need all the help I can get. There is just so much bad advice out there. I have been reading a little bit about it and it seems like a 50/50 chance it could be complicated or an easy case? I don't like this. My luck always runs with the negative side of things and it seems I can never catch a break. However finding out what it is will make it ( a little) easier for friends and family to understand.
11-28-2012, 01:06 AM   #10
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We sound a lot alike! I found it very stressful and embarrassing to talk about with anyone, not just family. I even pushed people away when they tried to help, I just wanted everything to go away. I was a very stressful person when I was younger, worried about everything and blaming myself. Regardless of what is causing the symptoms you are experiencing, letting go of the other things that cause hurt in your life will go a long way to making you a more whole person. That's just my own experience now, I wish someone had told me that when I was your age. That said, it's sometimes easier said than done....

You know, one of the best periods of life I had was when one of my doctors prescribed some Wellbutrin when I particularly depressed. It not only made me feel better, but it also eliminated my symptoms. Unfortunately I started seeing someone who was totally against any kind of medication....so I quit taking it, against my better judgement, and things went downhill from there. After that the drug never really worked again - it happens. But it made me realize that 'stress' can have an impact, it's just frustrating too because I would have flare ups when it felt like everything in life was going great!

I don't know, this disease really sucks and I hope you are going to be ok. Try to be optimistic, it's the only way. I have a view of life that is very much in the present and a little bit looking forward. Go with the flow. The past is the past. Anyway, that's just me - everybody is different. You will find your own path, and I wish you all the best.
11-28-2012, 01:31 AM   #11
Earnellzwifey
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Hi Heather,

First off I would like to welcome you to the group. This is a great place to get accurate information because it is coming from the ones that are suffering with the disease. I hope that the scope can give you some more answers as to what is going on.

One thing that I would like to add is about your joint pain. Have you ever had a MRI on the problem areas. The reasons that I mention this is because I have had negative x-rays and then they find a problem either inside the bone or with the soft tissue on a MRI. Someone already mentioned getting a bone density scan that can be very helpful as well.

I would like to also add that no matter how big or small your concern may be you can post it on here and we will try our best to help you out. Best wishes and please keep us updated on how things are going.
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11-28-2012, 09:12 AM   #12
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I have only ever had an MRI for half my back and brain. I wouldn't ask for it unless the dr says I need it because my insurance deductible is like 3000 so I would have to pay out of pocket. Same goes for the colonoscopy but at least that makes a little more sense. However if I don't have crohns I may look into it once I feel like trying to figure this out again
11-28-2012, 01:56 PM   #13
Earnellzwifey
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Wow a $3000 deductible. I am so sorry you have to deal with that on top of everything else. I hope your able find some answers with the least out of pocket cost. Gotta love the health care system .
11-28-2012, 02:33 PM   #14
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Yah that's the main reason why I've been putting it off for so long. That and I was scared about the colonoscopy. However now the pain is do bad I'm taking Vicodin once or twice a day now. I hate it but it is the only thing that makes my stomach feel normal. Yah it used to be 1000 but it says 3000 now. That might include my moms too but it would at least be 1500 if that is the case. My mom just got remarried and my new stepdad is thinking of getting a better insurance but it will still be my secondary insurance so not very helpful as far as the deductible goes.
11-28-2012, 06:26 PM   #15
KatyBuckeye
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Hi Heather- Welcome to the forum! I also live in southeast Michigan

I think a colonoscopy is a great place to start. About your joint pain- it could be related to IBD, if that is what you have, or it could be a separate diagnosis. I'm dealing with joint pain right now myself and they are trying to figure it out. Seeing a rheumatologist in addition to the GI doctor would probably be helpful for you. All of my blood tests are normal for various types of arthritis, but they are considering the possibility of seronegative inflammatory arthritis.

I hope you get some answers soon! How long do you have to wait?
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11-28-2012, 06:48 PM   #16
hammykins
 
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Only about 2.5 weeks left to wait. I saw a horrible rheumatologist that brushed me off completely and he seemed set on diagnosing me with fibromyalgia as soon as I walked in the door. My reg doctor tested me for arthritises and lupus. I've also been tested for some back things and various joint X-rays. I never thought my body pain could possibly be related to my tummy troubles. Also if I don't have crohns I do have really low vitamin d that might be causing the pain and fatigue.
11-28-2012, 06:50 PM   #17
hammykins
 
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Around where do you live? I live around Livonia right now.
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