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Crohn's Disease Forum » General IBD Discussion » At risk of sounding stupid...just looking for imput


 
08-30-2013, 11:05 PM   #1
CarolinAlaska
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At risk of sounding stupid...just looking for imput

I've had right flank pain and occasionally same area abdominal pain when I lay on my right side since January. I've had an abdominal ultrasound and CT scan which were normal. At first they treated me for pyelonephritis, but it didn't take the pain away in spite of clear urine tests and above mentioned normal scans.

This week I got sick with fever and pain settled in the right flank and abdomen again constantly. Urine showed moderate leukocytes, so again they are treating it for UTI, but I don't think that is helping the flank issue except the severity of it is settling back down.

I'm wondering if my pain could be bowel related? I have to eat a gluten free diet to keep from having diarrhea or constipation, but have been doing this for years now without the pain. No, I'm seronegative for Celiac. No weight loss, no blood in stools, nausea only when I'm sick, like right now.

Did anyone else present with IBD like this? Right side pain for 8 months, mostly when lying on your side at night? Should I ask for a colonoscopy?

And yes, my daughter does have Crohn's or I probably wouldn't really even consider it.

Thanks in Advance,
Carol
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*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
08-30-2013, 11:11 PM   #2
mere282
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Mine started with extreme pain just to the right of my
Belly button. Oh yeah and eating almonds ...
Never hurts to ask your dr. But there are less invasive
Tests you could do first. I think everyone is
Differnt. I only had weight loss with my first flare.
Good luck! Hugs for your daughter:-)
08-30-2013, 11:15 PM   #3
Clash
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I've had issues and went to a GI and had colonoscopy/endoscopy before C started his issues. Since C's dx, my issues returned and due to C's dx the GI was convinced it was CD for me as well. I had another colonoscopy and SBFT and all came back normal. Also during one episode had a CT scan, normal. But I am glad that I had the scopes, the SBFT not so much...yuck!

Could you start with a fecal calprotectin? If that showed inflammation then you could go ahead with the endoscopy/colonoscopy?
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08-30-2013, 11:16 PM   #4
Essieluv
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I think it could definitely be bowel related. Have you had any blood work done? Maybe just a simple SED rate and CRP panel would be a good idea. They show any active inflammation, so even if what you are experiencing is not bowel related but still causing inflammation, it could help find an answer. You probably already know this, but heating pads or hot water bottles can help with pain.
Sorry if this is intrusive, but how have your BMs been? Have they increased/decreased? Are you having the same pain when using the restroom?
Whatever it is, I hope it goes away. Maybe a low FODMAP diet would help? I know that is good for people who have abdominal distress, such as IBS. Which reminds me, it could be IBS, too. Either way, I think asking for more tests would be a good idea (a stool test might be incredibly helpful).
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08-30-2013, 11:22 PM   #5
CarolinAlaska
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I've had issues and went to a GI and had colonoscopy/endoscopy before C started his issues. Since C's dx, my issues returned and due to C's dx the GI was convinced it was CD for me as well. I had another colonoscopy and SBFT and all came back normal. Also during one episode had a CT scan, normal. But I am glad that I had the scopes, the SBFT not so much...yuck!

Could you start with a fecal calprotectin? If that showed inflammation then you could go ahead with the endoscopy/colonoscopy?
I pooped a lot as a kid and couldn't put weight on. I thought I just had a fast metabolism. That continued, without abdominal pain until about 8 years ago when our family went GF for my daughter, and low and behold it helped me too. I think the FCal test might be a good idea if the insurance agrees. I'm already 45 and screening baseline colonoscopies start here age 50 anyway...
08-30-2013, 11:30 PM   #6
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May also look into gallbladder...
08-30-2013, 11:31 PM   #7
CarolinAlaska
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I think it could definitely be bowel related. Have you had any blood work done? Maybe just a simple SED rate and CRP panel would be a good idea. They show any active inflammation, so even if what you are experiencing is not bowel related but still causing inflammation, it could help find an answer. You probably already know this, but heating pads or hot water bottles can help with pain.
Sorry if this is intrusive, but how have your BMs been? Have they increased/decreased? Are you having the same pain when using the restroom?
Whatever it is, I hope it goes away. Maybe a low FODMAP diet would help? I know that is good for people who have abdominal distress, such as IBS. Which reminds me, it could be IBS, too. Either way, I think asking for more tests would be a good idea (a stool test might be incredibly helpful).
Inflammatory markers were normal last spring (SED and CRP). BMs are a yucky sticky mess (I call it glue poo) and I often have to bathe after because it is impossible to wipe (sorry if it is TMI) but I'm pretty regular. I have bowel urgency at times (especially if shopping). No pain with BMs.
08-30-2013, 11:33 PM   #8
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^^^ In between the first and second colonoscopy my GP sent me for a HIDA scan, I had low percent but still in normal range result but GP and surgeon decided it was my gall bladder and took it out...it didn't help.
08-30-2013, 11:35 PM   #9
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Ooops my arrows got in a little late but meant to add my husband seemed to be having same issues(C's stepdad) and he had his gall bladder removed and his issues went away.
08-30-2013, 11:48 PM   #10
CarolinAlaska
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May also look into gallbladder...
The ultrasound and bloodwork were neg for this.
08-30-2013, 11:57 PM   #11
CarolinAlaska
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What would be the worst case scenario if I were to continue to ignore it? It's mostly likely a benign cause, right? Maybe it will only get bad when I'm sick (like now) or when under severe stress (like when my daughter got diagnosed last January...). Maybe I'm worried about nothing. At first I thought it was my kidney, but now I'm starting to get convinced that it is bowel...which honestly, is not as worrisome as long as it doesn't get worse... (or isn't cancer!)
08-31-2013, 12:35 AM   #12
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Hey Carol,

Sarah's pain was upper abdominal for the most part but later on, closer to diagnosis time, it was right flank pain. She was also investigated for kidney issues but the tests came back negative. Turns out it was caused by the bowel (Terminal Ileum) pressing against the right ureter and causing a back up of urine into the renal pelvis...AKA - Hydronephrosis.

Personally, I would have a scope done.

Dusty. xxx
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08-31-2013, 02:25 AM   #13
hugh
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BMs are a yucky sticky mess (I call it glue poo) and I often have to bathe after because it is impossible to wipe (sorry if it is TMI) but I'm pretty regular. I have bowel urgency at times (especially if shopping). No pain with BMs.
I had that problem till a doc gave me doxycillan for a sinus infection.
Didn't do a thing for the sinus but nice poo for a month
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08-31-2013, 03:41 AM   #14
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Hugs Carol

I agree with Dusty. It can't help to get scopes done. If nothing else will put your mind at rest.

xx
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08-31-2013, 04:01 AM   #15
Droopy Drawers
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I get pain on the right of my belly button & in my right flank too

Had an endoscope & colonoscopy 8 days ago
Gastro removed a polyp from my rectum & took biopsies from both directions
Had a hida scan & my ejection is 7%

Blood work showed inflamation consistent with Crohn's, so starting Pentasa today

Follow up in 4 weeks to see if it's working

My advice is find a Doc you can really be comfortable with & get some testing done

Hope you feel better soon
08-31-2013, 04:31 PM   #16
CarolinAlaska
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Thanks for all the input. Just what I needed. I got on the hospital website and enlightened myself a bit (It's been 6 months since I last did any testing). This is what I found. I've only had these tests done: 1. Retroperitoneal ultrasound (excludes liver, gallbladder, etc). 2. Complete metabolic panel (no inflammatory markers, CBC) 3. CT IVP (contrast was only of renal system, not bowel system). I think I was so sure that it was my kidney that we focused on that and then stopped. Of course I had a lot on my mind with J's new diagnosis and problems at the time... Somehow since then I convinced myself that I had had a full workup (my form of denial that anything was wrong).

I'm thinking this is what I am going to ask for on Tuesday when I go back to work - CBC, CRP, sed rate, and another CMP. I also want a colonoscopy referral, but I am trying to decide whether or not it is important to see a GI for this - what do you think?
08-31-2013, 04:36 PM   #17
CarolinAlaska
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By the way, Droopy Drawers, I love your name and your profile picture! Looks like you are just 2 steps ahead of me. What kind of doc did you go with and how did you choose him/her?
08-31-2013, 05:09 PM   #18
Essieluv
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Personally, I think it's best to get a colonoscopy done by a GI, as they know what to look for. A GI might notice something that general doc might not.
08-31-2013, 06:18 PM   #19
CarolinAlaska
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Personally, I think it's best to get a colonoscopy done by a GI, as they know what to look for. A GI might notice something that general doc might not.
That is my thought too. Unfortunately, this means a trip to Anchorage 3 hours away...
08-31-2013, 06:23 PM   #20
Essieluv
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Is there a Colorectal Surgeon closer to you? My CRS did my first colonoscopy/endoscopy that led to my diagnoses. I think that's the next best option.
08-31-2013, 06:25 PM   #21
CarolinAlaska
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Ha! My choices locally are three general surgeons or an internist to do a colonoscopy... I am in rural Alaska...
08-31-2013, 06:32 PM   #22
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I know it's a pain to travel, our nearest GI is also 3 hours away and the colorectal surgeon 7 hours, but I would still go with a GI every time Carol.

Dusty. xxx
08-31-2013, 06:46 PM   #23
CarolinAlaska
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Thanks, Dusty. I'll have to figure out who and how to get the time off work...
08-31-2013, 06:56 PM   #24
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Ugh, it's never just as easy as saying...righto off I go, is it.

I know it won't be easy for you to juggle all this Carol but with all you are going through yourself, plus the fab job you are doing with Jaedyn, well, you deserve the best hun.

Dusty. xxx
08-31-2013, 09:44 PM   #25
CarolinAlaska
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Ugh, it's never just as easy as saying...righto off I go, is it.

I know it won't be easy for you to juggle all this Carol but with all you are going through yourself, plus the fab job you are doing with Jaedyn, well, you deserve the best hun.

Dusty. xxx
Aw!
08-31-2013, 09:46 PM   #26
CarolinAlaska
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My nurse practitioner colleague ordered the labs and a chest xray (did I mention I also have a bad respiratory infection in my chest right now?), so off I go to the hospital... (Sometimes working in the medical field has its perks!)
09-01-2013, 02:36 AM   #27
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By the way, Droopy Drawers, I love your name and your profile picture! Looks like you are just 2 steps ahead of me. What kind of doc did you go with and how did you choose him/her?

That pic is me, about 60 years ago

I've been having tummy issues all my life & at this point want some answers & relief

Had my first hospital stay in my early teens & they were after my kidneys too
I was discharged with no diagnosis & told I was too fat & to limit my calories to 1000 per day

Fast forward to my 20's & I suddenly started having 18-20 explosive, bloody bm's per day

Went to my PCP & he sent me for a barium enema & I was diagnosed with colitis.
Lost 110 lbs & was on high dose pred, lomotil & Metamucil

That calmed things down for a bit, but a few years later I started with the awful pain in the flank & next to the belly button, so back to the PCP

PCP said, Gastro so I stupidly selected one closest to home

Gastro did my first ever colonoscopy & couldn't knock me out
He actually shouted @ me " why won't you go to sleep " to which I replied " you're the one with the needle "

His reply was " now I don't know what to do "
I told him full steam ahead, as no way was I prepping again

So, he did my scope & a few days later I went back to see him for my results
He showed me a huge raw spot about the size of a saucer & said he had no idea what it was & suggested I go home & ring a surgeon to have my gallbladder yanked

I swear he got his license from eBay , told him Docs like him bury their mistakes & stormed out of the office

Went back to the PCP & he said leave the gb alone, as I would have non stop bloody Diarrhea if they pulled it

Then my PCP retired, so I had to find a new one

Stared with other symptoms
Odd rashes & joint probs, so the new PCP said lupus
Autoimmune runs rampant in my Family, so I thought it might be possible
Went to a Rheumy & they found my vit D to be @ 13, b12 anemia & osteopenia

No signs of lupus, so needed to find another Gastro

Thanks to the Internet, I found the top Gastro in my area & he agreed to take me

I brought him my records dating back to 74 & he said I think it may be Crohn's, but you need to be scoped again from both directions

He had me sleeping like a baby in minutes
He also ordered an upper Gi with small bowel follow through

This is where it gets really crazy
Before I had my follow up appt. he was arrested & spent a year in jail for drunk driving

Went to another Gastro in the same practice & he said perhaps it was my back

I was starting to feel like a dog chasing it's tail & washed my hands of all Docs for a year

Pain finally made me go back to my PCP & she insisted it was time for another Gastro, so back online searching

Found another highly rated Gastro & pulled in a favor from a friend to get me booked quicker

Hopefully she can get this sorted once & for all

I would absolutely go the distance for a Gastro to do the testing & Sincerely hope you get some answers & relief soon
09-01-2013, 10:40 AM   #28
CarolinAlaska
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Here are my blood results from yesterday: CBC normal. CMP normal except glucose 123. CRP 6.7 (<1 normal), and ESR 49 (0-20 normal). Back pain unchanged except that sometimes I can lay on my right side for a while (15-20 minutes?) before I have to switch. Still having fevers up to 101.5 this morning (I think it must be this chest infection, no chest x ray results yet but the CBC didn't show a WBC elevation...). By the way, those inflammatory markers are as high or higher than J has ever had... I guess it must be time for a fecal calprotectin test.
09-01-2013, 10:50 AM   #29
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It can't hurt Carol. Really hope you work out what's going on soon and start to feel better xx
09-01-2013, 10:59 AM   #30
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Hope you get to the bottom of this soon! As you know ESR and CRP are non-specific and could be a result of an infection (chest) or a variety of non-IBD type things. Medscape has a long differential dx list of causes of flank pain. Crossing my fingers that it's easily sorted out and you're feeling better soon!
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