Diagnosing: to Pillcam or to not Pillcam- that is the question

[tahoechickadee]

Hi,

I'm new to this forum, I also posted in the fissure thread but wanted to post in the undiagnosed, since my issues seem to fit in here too...any help advice would be helpful.

Here's my background/history:
Dec 2014: pain in lower RH quadrant, only while sleeping or in early AM
April 2015: Bad D, going 6-10x a day, bad pain in rectum (fissure/hemmys?)
May 2015: Colonoscopy #1: Clean, Dr suspected proctitis, biopsies negative
Sept 2015: Colonoscopy #2 (GI Dr #2): Clean, hemmys, anal fissure
Oct-Nov 2015: Colorectal Dr suggests nitro, try but doens't help
Jan 2016 (GI Dr # 3): MRI/MRE, clean, fecal parasites: clean, doesn't suspect even IBS, doesn't know what is wrong w/ me, says nothing...?
Bloodwork: monocytes consistently low, B12 within range, but on the edge of being low/out of range.

Other: eyeball pain, throbbing teeth, throbbing wisdom teeth socket pain, arthritis-like pain in knuckles, knees, and hips; general feeling of sick, but never actually get sick (??), pain in throat (but no strep), strange cough that lasted a month (not sick nor did I have a cold, allergy meds did not help). Pain in lower RH quadrant seems to have moved up closer to rib cage, sometimes in middle of belly, pain comes & goes, often feels like a burning sensation.

BM's: really smelly. Like nuclear smelly. Noticed this when all the fun started in May 2015. Also, mostly like a milk shake, 1x a day is a good day, otherwise 2-3x a day.

Fissure: have had since May 2015, Colorectal Dr suggested surgery, i wanted to try other approaches. Tried nitroglycerin, didn't work. Tried higher fiber/more water, sitz baths, didn't help. Was going to try Botox, but insurance won't cover. Worried about surgery, I read if you have an IBD, surgery isn't such a great idea.

Food/lifestyle: I swim hard 3-4x a week, I do yoga, walk, and hike. Very active.
Cook my own food, try to stick to clean, whole foods. Unsure about diets b/c of my Fissure....FODMAP says nuts are ok, but nuts would seem like a bad choice if you have a fissure. Hmm.

Meds tried:
Ciprofloxacin: ER Dr put me on this when i went in for bad D/pain. It stopped pain, but D started up about 5 days after course of antibiotics were done.
Hydrocortisone: GI Dr #1 put me on this for 'suspected proctitis'- suppositories, cream, enemas. Enemas worked, then rectal pain/bleeding/BM pain immediately comes right back if stopped. Read hydrocortisone is BAD if you have a fissure. GI Dr #1 completely missed the fissure in 1st colonscpy.
Nortriptyline: GI Dr #2 wanted me to try this for the lower RH quad pain. Helped a little, but made me numb, and horribly constipated which is BAD for a fissure. Stopped taking
Budesonide/Entocort: GI Dr #1 put me on this, not sure why...
Antispasmodic: take on occasion when RH quad pain is bad

Summation:
GI Dr #3 thinks the next step could be to try low FODMAP diet (which I am starting now) and also the Pill cam. I am also thinking a visit with a 2nd Colorectal Dr to do a Flex Sig to take another look might be warranted. Are there other tests I should look into? Seems like i've had just about every test, and nothing is showing up, and i just DON'T feel well. Something isn't right. Would the Pill cam be a worthwhile test if I seem to be having all lower (rectal) pain? What about fecal Calprotectin? Anything else I should ask for?

Thank you for any advice, thoughts, accolades, or direction you may have! I would love to feel better...oo:

 

[ronroush7]

I would suggest the fecal calprotectin.

 

[fuzzy butterfly]

Hi sorry for all you are going through. I would say that the pill cam might be your best bet as it will be able to see all the way through your intestinal system, and should be able to see any inflammation if there is any. You could try the fecal calprotectin test first if you wish, it is a good marker for inflammation to.
Best wishes n keep us updated please. I hugs

 

[tahoechickadee]

Thanks fuzzy butterfly...I will push my GI Dr for the test. Will report back once I get somewhere...if it shows anything! Every test I've taken seems to show everything clean! :mad2:

 

[fuzzy butterfly]

You are most welcome, hope you can get this sorted out soon and get to feeling better..it is so annoying when test are not showing up anything but you know something is just not right.. Hugs n best wishes, Mandy

 

[tahoechickadee]

Thank you Mandy. Is it possible the Pill Cam wouldn't show anything either? I've read some of the posts where people have said ALL their tests come back clean, so can they treat based off of symptoms alone?

I'm getting a 2nd opinion about the fissure in a month or so.

 

[fuzzy butterfly]

Hi Tahoe, I guess that if there is something in your gi tract the cam would find it, and all tests may be all tests that they have had and not necessarily ALL tests..??. I believe that they can give treatment based on symptoms to see if it helps. Hope you can get answers soon. Hugs

 

[tahoechickadee]

Good point...i'm just worried I'll have the pill cam and fecal calprotectin and the Dr will STILL say, 'oh, you're fine'...i guess I can push back at that point. Still waiting on the GI Dr to call me back to talk about next steps/tests, supposed to have a phone consult as they are located in another state. oo:

 

[fuzzy butterfly]

Hi I understand that feeling, quite simply a few tests came back negative for me to. My crohn's was diagnosed with a CT scan. I hope that the pill cam can get you a diagnosis. It is a very good way to look at all of the intestinal tract.
Sometimes if the inflammation is very minor biopsies can help as it may be invisible to the eye.
At this point I guess you need to see what they say on the consult and take it from there. I am advising that if any of the tests don't show up anything, push push push to get some answers. There is something not right and you need to know what that is asap. Don't let them say it is all in your mind, coz basically I think all that means is we don't know what is wrong, so we will blame it on you.
Very best wishes n hugs Mandy

 

[tahoechickadee]

Thanks for the advice Mandy! I will keep pushing them. Hope to have some kind of explanation soon! :dance:

 

[fuzzy butterfly]

No worries love, hope you get sorted soon. Please let me know how you are getting on, and if you need any more info..
HugsMandy

 

[tahoechickadee]

Thanks Mandy for all the support and advice! I will post once I get more info...it's weird this has been so hard to diagnose, and Dr's are so dismissive about it being 'nothing'. Take care!! -Monica

 

[fuzzy butterfly]

Your welcome. Thing is there are so many things that present similar symptoms ,it could be anything. so diagonsis can be difficult i was waiting around 2/3yrs b4 i got mine. Fingers crossed its sorted soon. you take care too Monica :hug:

 

[everthin]

Talk to someone at the crohn's colitis foundation .. this can be missed and is 30% of the time, you need the right doctors to diagnose, you may never get in front of them, and they may not know what to look for. Just what I've heard from the foundation. I've been told we have nothing to offer you, and you'll have to wait for it to get worse.

If your just doing FODMAPS for the first time then your only just beginning to tap into gut healing. Health talks has the healthy gut summit and also this year they did the heal your gut summit, I didn't bother with it this year and went straight for the microbiome summit, and am soaking all that up instead. The gut healers have way to many different methods to the madness, currently reading beyond pale, the loving diet and Rubins book.

 

[tahoechickadee]

Hi Everthin- thanks for the advice. I'm seeing a IBD specialist at the Mayo clinic in AZ tomorrow (you would think he would be top pick??)- doing a flex sig, fecal calprotectin, and pill cam, which I had to request. He wanted to write me off as having IBS last time I saw him, and he sent me home with some antispasmodics. Going to see what those tests show (if anything) and if he can still sit there with a straight face and say 'i'm fine' -after having a swollen throat (not strep, was tested by ENT), throbbing eyeballs, throbbing gums & teeth, ulcer-like canker sores in my mouth, fatigue, low B12 (234), and feeling like i have the flu all the time on top of pain in my rectum, fissures that wont heal, and pain in my GI after eating bland foods....i'm going to switch up Drs. Sigh. This is going to be an uphill battle I can tell...

 

[my little penguin]

Good luck
But why only a flex sig?
That leaves way too much not looked IMO
After you have a dx maybe but until you actually know what is an issue

 

[tahoechickadee]

I had 2 colonoscopies last year (first one was said to be proctitis, 2nd one clean), so i'm maxed out on my insurance and would have to wait until end of this year for another colonoscopy. There is something going on in my rectum- other than the fissure pain (i've had a fissure on/off again for almost a year), i'm feeling like a fiery-ball-of-hell type of pain every time i make a BM that is like a milkshake and smells like death. So there is the passing glass pain of the fissure, and then whatever else is going on...

Good luck
But why only a flex sig?
That leaves way too much not looked IMO
After you have a dx maybe but until you actually know what is an issue

 

[Eternal_Howl]

Hi,

I'm new to this forum, I also posted in the fissure thread but wanted to post in the undiagnosed, since my issues seem to fit in here too...any help advice would be helpful.

Here's my background/history:
Dec 2014: pain in lower RH quadrant, only while sleeping or in early AM
April 2015: Bad D, going 6-10x a day, bad pain in rectum (fissure/hemmys?)
May 2015: Colonoscopy #1: Clean, Dr suspected proctitis, biopsies negative
Sept 2015: Colonoscopy #2 (GI Dr #2): Clean, hemmys, anal fissure
Oct-Nov 2015: Colorectal Dr suggests nitro, try but doens't help
Jan 2016 (GI Dr # 3): MRI/MRE, clean, fecal parasites: clean, doesn't suspect even IBS, doesn't know what is wrong w/ me, says nothing...?
Bloodwork: monocytes consistently low, B12 within range, but on the edge of being low/out of range.

Other: eyeball pain, throbbing teeth, throbbing wisdom teeth socket pain, arthritis-like pain in knuckles, knees, and hips; general feeling of sick, but never actually get sick (??), pain in throat (but no strep), strange cough that lasted a month (not sick nor did I have a cold, allergy meds did not help). Pain in lower RH quadrant seems to have moved up closer to rib cage, sometimes in middle of belly, pain comes & goes, often feels like a burning sensation.

BM's: really smelly. Like nuclear smelly. Noticed this when all the fun started in May 2015. Also, mostly like a milk shake, 1x a day is a good day, otherwise 2-3x a day.

Fissure: have had since May 2015, Colorectal Dr suggested surgery, i wanted to try other approaches. Tried nitroglycerin, didn't work. Tried higher fiber/more water, sitz baths, didn't help. Was going to try Botox, but insurance won't cover. Worried about surgery, I read if you have an IBD, surgery isn't such a great idea.

Food/lifestyle: I swim hard 3-4x a week, I do yoga, walk, and hike. Very active.
Cook my own food, try to stick to clean, whole foods. Unsure about diets b/c of my Fissure....FODMAP says nuts are ok, but nuts would seem like a bad choice if you have a fissure. Hmm.

Meds tried:
Ciprofloxacin: ER Dr put me on this when i went in for bad D/pain. It stopped pain, but D started up about 5 days after course of antibiotics were done.
Hydrocortisone: GI Dr #1 put me on this for 'suspected proctitis'- suppositories, cream, enemas. Enemas worked, then rectal pain/bleeding/BM pain immediately comes right back if stopped. Read hydrocortisone is BAD if you have a fissure. GI Dr #1 completely missed the fissure in 1st colonscpy.
Nortriptyline: GI Dr #2 wanted me to try this for the lower RH quad pain. Helped a little, but made me numb, and horribly constipated which is BAD for a fissure. Stopped taking
Budesonide/Entocort: GI Dr #1 put me on this, not sure why...
Antispasmodic: take on occasion when RH quad pain is bad

Summation:
GI Dr #3 thinks the next step could be to try low FODMAP diet (which I am starting now) and also the Pill cam. I am also thinking a visit with a 2nd Colorectal Dr to do a Flex Sig to take another look might be warranted. Are there other tests I should look into? Seems like i've had just about every test, and nothing is showing up, and i just DON'T feel well. Something isn't right. Would the Pill cam be a worthwhile test if I seem to be having all lower (rectal) pain? What about fecal Calprotectin? Anything else I should ask for?

Thank you for any advice, thoughts, accolades, or direction you may have! I would love to feel better...oo:

I'm going to ask you a really weird question. Are you on an injection form of birth control? You indicated migrating pain, or pain in several places. I am just getting over this and what stopped it, I think, was I switched contraceptives from pill to injection and the first two injections I had no issue - the third is when the issues started and it was a process of elimination. I did blood work and was about to get CT scans when I held off and just waited it out. I'm assuming from your user id that you're female. If I'm wrong, humble apologies.