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12-13-2015, 09:30 PM   #1
Kitten_Owl
 
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They say it's IBS...

They say it's IBS... But I am not too sure. Some back ground info...
Four months ago I started having terrible diarrhea (10 plus a day) and abdominal pain, as well as nausea. The pain was so bad that I was doubled over in pain. This was on a monday, and that saturday I went to the on call. On call said that I have the stomach flu. They gave me something for the nausea and Omeprazole. This did not help. A week later I had a follow up with my normal DR, and she said that she "would figure this out". Took blood, and said that she would get me in with a GI.

Well, I got home from the apt and in my mailbox was a letter from the dr's office, letting me know that the doctor that I had just seen was leaving the practice in a week!!

Needless to say, that DR was of no help. Made an appointment with another DR, and she told me "Sounds like IBS". Took more blood, a poo sample, and then she had an ultrasound...of my kidneys! Well, the ultrasound was normal, so I made an appointment for the GI doc. In two months.

Gi doc says that it "could be anything". Does a poo sample and takes more blood. Also scheduled me for a colonoscopy and an endoscopy. Gives me a script for Glycopperate (spelling?) 2mg twice a day and tells me to take three pepto tabs a day. I am still in pain- at least a seven out of ten.

I stopped the pepto quickly- it did not help at all. The glycopperate stopped the diarrhea...but now I'm constipated.The colonoscopy was normal, and the endoscopy showed "mild inflammation due to acid reflux " so they put me back on the omeprazole, 20 mg a day. Still no relief.

The pain is intense, primarily in the upper right and left quadrants of the abdomen. However, I do also get lower right quadrant pain. Two weeks ago I started developing neurological symptoms,intermittent pins and needles on my hole body. I am fatigued, and loosing weight, and so not want to eat.

I have a family history of autoimmune diseases, and have psoriasis myself. This pain is really interfering with my school (i am a grad student) and my work (two jobs, one at a library as a student assistant(kind of an intern), and the other as a cashier at a big box store). The pain is a 7/10 most days. I have a high pain tolerance (I have had 12 ankle surgeries, including one where they broke three different bones and pinned them back together...and I didn't take pain pills after them...so yeah. High pain tolerance.)

Blood tests came back with a slightly low MCHC at 31.4 (32-36 is normal) and a low vitamin D (no value given). Poo samples were normal. I really don't want it to be crohn's (no offense anyone ) but at this point, I don't know what else it could be. It just doesn't seem like it's IBS. Have an appointment with the general dr this wee. I don't see the GI doc again until April though.

I guess my question is, could it be something else with the blood tests being negative and the colonoscopy and endoscopy being negative?
12-13-2015, 11:13 PM   #2
ronroush7
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Have they done a fecal calprotectin? I hope you get some solid answers soon. I an sorry for all you are going through . If you get the chance , keep us updated.
12-14-2015, 12:13 AM   #3
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Did they take biopsies during the scopes? Did they check for celiac disease?

With the endoscopy and colonoscopy they can only see the first part and last part of the small bowel. That leaves a large portion of the small bowel unseen. If you are still experiencing severe symptoms let the GI know and tell him you feel more testing is warranted. An MRI, MRE or other type of imaging can allow them to check the small bowel for inflammation. A pill cam is another option for checking the small bowel but can sometimes be harder to get approved by insurance.

It might be a good idea to keep a symptom journal that you can share with the doc.

I hope you are able to get answers soon.
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C age 19
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12-16-2015, 06:08 PM   #4
buttER
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Do you get fever as well?
Have you noticed if you have mucus or blood in your stools?
Fatigue and weight loss to me are already alarm bells, unless you are an avid ultramarathon runner.......
You are already doing well fighting your corner. Don't let negative results make you submissive. I had a couple of "negative" colonoscopies until I got one showing alot of ulcers - and even then that was not enough for a diagnosis.

Have you kept a food diary or do you know of any foods that trigger your symptoms?
Good luck and keep us posted.
12-16-2015, 06:46 PM   #5
tzvia
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Did they look at CRP (c reactive protein) in your blood?
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12-18-2015, 09:22 PM   #6
Kitten_Owl
 
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I do see mucus in and on the stool. Blood, I see streaked on the surface, and (maybe) mixed in....Kinda orangish spots. Right now I am dealing with SEVERE constipation. I think that it is from the Glycopperate. I will be contacting the GI doc on Monday, about this.



I am not sure if they tested CRP.
I am keeping a food diary, along with a list of symptoms, how bad the pain was, and Bowel movements.
I haven't noticed any fevers...never had one when I had my temp taken at the docs.

I did get my general doc to put me on a SSRI. My research says that they are supposed to help IBS. I was on a SSRI when all of this started, but they had just switched me from Zoloft to Prozac, and I do not tolerate Prozac. While I was on the Zoloft I would have bouts of abdomen pain, and sudden urgent diahrrhea. I figure, try this. If it helps, ok it's a nasty case of IBS. If not, then I could be something else.

In other news, the lab screwed up the stool test. They froze them. So not I have to do that again. Grr.

Last edited by Kitten_Owl; 12-18-2015 at 09:40 PM.
12-20-2015, 08:55 AM   #7
Kero
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I was also diagnosed with IBS-D for while. Every other test came back negative, except the CT scans. I had 2 done in a 6 month period, one showed 10 cms inflamed, the second one 25 cms (6 months later). Every other test has lied for me, that is stool samples, blood work, scopes with biopsys, etc. Keep pushing. You know your body best and know if something is wrong. if the treatment they are giving you doesn't work, push for more. Hope you get answers soon <3
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Crohn's Disease Dx: October 2015
Anxiety/depression
Previously diagnosed with IBS-D

Medications:

Celexa for anxiety/depression

Crohns
Remicade HAd first loading dose, second on on Dec 23. 500mg
Imuran 150 mg
Entocort 3mg
Pentasa 4g/day-failed

IBS-D
Buscopan-failed
Librax-failed
Dicetel-failed
Modulon-failed
Prevacid-failed
Elavil-failed
12-20-2015, 09:12 PM   #8
Kitten_Owl
 
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I think the reason that they are pushing the IBS diagnosis so hard is because I have had some constipation- regardless of the fact that I have told them repeatedly that the constipation has ONLY occurred after i take Pepto, imodium, or the glycopperate. i have contacted the GI doc, and am waiting to hear back from them.

I thought that the continued pain was from the constipation, but seeing as I had the pain after the colonoscopy and today, after having taken three doculax two days ago...I think i can safely say that it is not related to the constipation.
12-20-2015, 09:34 PM   #9
ronroush7
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They say I have IBS but with my symptoms I question it.
12-20-2015, 09:45 PM   #10
Catherine
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I am going to suggest you try an IBS diet, look at FODMAPS.

My IBS which is much better on this diet. I am now sure of dx.

My daughter who I initially try this diet with got worse on the diet. She dx with Crohn's at 16 years. My kid does not have any bowel symptoms.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-21-2015, 09:34 PM   #11
Kitten_Owl
 
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Catherine- I took a look at that diet. It's a lot of stuff that I am already avoiding, but I will add the other foods onto my watch list. I am keeping a food/symptom journal to try and figure out if there are any correlations.
12-30-2015, 05:26 PM   #12
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SO the good news is that the GI was able to get me in for a quick appointment in two weeks. The bad news? The pain is worse like an 8-9/10. I've been missing work, and none of the meds are helping me at all.
12-30-2015, 05:31 PM   #13
ronroush7
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SO the good news is that the GI was able to get me in for a quick appointment in two weeks. The bad news? The pain is worse like an 8-9/10. I've been missing work, and none of the meds are helping me at all.
I am so sorry, Kitten Owl. I hope things improve quickly.

12-30-2015, 05:44 PM   #14
my little penguin
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Fwiw Ds main symptom is constipation
Not diarrhea and he is dx with crohns
Not many Gi realize that crohns can present with constipation as well
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12-30-2015, 08:48 PM   #15
Kitten_Owl
 
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the thing is, the constipation did not start until they put me on the glycopyrrolate (I've been spelling it wrong...oops ) If I go off of the glycopyrrolate I get diarrhea again. Hell, I'm on it not and am having diarrhea....

But the pain is so bad right now, I'm just miserable. A couple times I had pain so bad that all I could do was double over and sit there.
01-05-2016, 08:56 PM   #16
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I was feeling so much better yesterday, I was like "h, I was over-reacting. I shouldn't have called the doctor, it's all better", and then today....Wham! Right back to where I was.

I have noticed that as the pain and GI stuff gets worse, the psoriasis gets worse. It's spread to almost my entire scalpa nd onto some of my neck in addition to my ears now. It's so itchy!!
01-05-2016, 09:06 PM   #17
ronroush7
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I was feeling so much better yesterday, I was like "h, I was over-reacting. I shouldn't have called the doctor, it's all better", and then today....Wham! Right back to where I was.

I have noticed that as the pain and GI stuff gets worse, the psoriasis gets worse. It's spread to almost my entire scalpa nd onto some of my neck in addition to my ears now. It's so itchy!!
I think my psorasis is getting worse on my leg.

01-13-2016, 09:30 PM   #18
Kitten_Owl
 
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That was one of the most disappointing drs appointments ever. The dr acted like i was inconveniencing them, said "well, all the blood tests, stool tests, and the endoscopy and colonoscopy are normal. So why are you here today?" and that he "could look me in the eyes and tell me that nothing bad was going on". He did schedule a HIDA scan for Friday. Said that he wants to hold off on doing a ct cause of the radiation....Also said that there were other drugs we could try...didn't prescribe any of them though.

I'm just so sore, and exhausted. I go back to school next week and just want this over with.

01-13-2016, 10:02 PM   #19
my little penguin
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Lets just say sometimes you need a second opinion
I had an ob look at me and tell me something similar except that I wasnt pregnant.
Yep you guessed it two days later positive test and nine months later a baby
Good luck
Hope you find answers soon
01-15-2016, 08:58 PM   #20
Kitten_Owl
 
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Lets just say sometimes you need a second opinion
I had an ob look at me and tell me something similar except that I wasnt pregnant.
Yep you guessed it two days later positive test and nine months later a baby
Good luck
Hope you find answers soon

Wow, just wow! Believe me, I know that sometimes you need a second opinion- When I was ten, I got diagnosed with tarsel coalition (I was born with my heel bone and ankle bone fused together- there's supposed to be a joint there). The Dr told me and my mom that there was nothing he could do. Another Dr said, no we can operate and try to fix it. Took twelve surgeries and two surgeons (the orgional dr got shipped off to Iraq shortly after the first surgery and my care was transfered to another dr. he was closer, so we kept going to him).

I will wait and see what the reuslts of the HIDA scan are. If they will do nothing for me after tha, I will seek another DR.

03-14-2016, 09:48 PM   #21
everthin
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I hope your feeling alright, your definitely tough, and your previous trials with pain have given you some stamina in this regard.

Your pain is getting bad, it sounds like your overworked and possibly stressed as well. I used to measure my pain by how many crying fits I had in a day. Also sounds like you have rollercoaster of pain like I do. I never know if I'll have a good day, an alright day, a better than yesterday day, or day of pure hell, it's a mystery. I got marginally better by dedicating my days to nutrition, cooking, gardening, and running with the gut healers, didn't have a life anymore anyways, may as well do some digging in the dirt. Google "psoriasis intestinal permeability". The reason these things run in families is because they all eat the same diet according to healers like Natasha McBride who became a healer because, well because of her baby, and family, however pre-disposition for Crohns is known for European Ancestry, but also the industrialized world, also seems to follow junk/fast food around as that takes hold in countries, so does Crohns and intestinal illness in general..
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