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05-18-2013, 10:26 PM   #1
NotsureNY
 
Join Date: May 2013
Location: New York, New York
Is it too early to assume IBD?

Symptoms started 12 days ago - upper abdominal pain, whenever I eat. No vomitting, No Nausea, No Diarrhea (well, when I had a lot of Ice cream I did, or side effect of a med but not really - always controlled)

All tests normal - blood work, CT w/ contrast, ultrasound, upper endoscopy

My situation is different b/c I have an important trip planned and I am fortunate enough to have two immediate family members who are doctors. my brother is a doctor who was in town for the week it started and my mother who was able to refer me within 1 week, right after my brother left.

Start: May 6, 2013
Day 1: Evening Pain/Burning in Upper Abd. Started
Day 2: Pain on/off
Day 3: Started various meds (Bentyl)
Day 4: Blood Work (Nothing but H Pylori +) - Started Nexium/Carafate
Day 5: Ultrasound (Nothing)
Day 8: GI Consultation - Started Gas-X
Day 9: Endoscopy of Upper GI (Nothing)
Day 10: Realized I have lost 7 lbs from inability to eat properly
Day 12: CT Scan with Contrast + 2nd Round of Blood Work. Started Lactaid. - CT negative and waiting on Blood work
Day 13: Today - as I type this - still no better unless on strict diet

Day 15: I have appt for HIDA w/ CCK (to rule out gallbladder)-
If that is negative - I am looking to do Capsule Endoscopy ASAP.
Day 18: I leave (This Thursday)

This may all seem rushed - but that is because I am leaving the country in 5 days and will be gone for 2 weeks. I do not wish to cancel my trip bc I have an elaborate proposal planned and my future fiance has been looking forward to this trip. It will be terrible not to enjoy all the delicious food (going to italy) but I am making sacrifice for her and will stick to my strict diet - I'm actually packing nutritional shake powder - enough for the entire trip (3.3 lbs of it!) Muscle Milk Light - so I can keep it low in fat but need nutrients.

I, too, have been getting nervous and researching what this could be. I am leaning towards IBD. My brother (doctor) says its possible but still too early. We are all hoping this will pass. As I do hope for yours as well!

I'm glad I found this forum - I have started a Food Journal of what I can tolerate so far - and hoping I can one day eat Pizza and delicious food again (Praying to be able to on this trip!!!)

I know its been less than 2 weeks - but I did steam roll thru a lot of tests - my brother says it only leaves a few things left. Gallbladder will be ruled out if HIDA is negative...which leaves only a handful of possibilities unless left undiagnosed.
05-19-2013, 02:14 AM   #2
Jennifer
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Hi NotsureNY and welcome to the forum!

Were biopsies taken during your upper endoscopy? Probably too soon for the results to be back on those though. I'm surprised they didn't do a colonoscopy as well if they were doing the upper scope (a colonoscopy is a key test to have done for a Crohn's diagnosis, with biopsies) since your colon (the transverse section) does go across your upper abdomen.

Its great that you have family who are able to get testing done for you sooner unfortunately for many people a diagnosis of IBD can take a while (for me it took 3 months but many others are still undiagnosed after years of testing) not to mention finding the right treatment plan for you will also take some time (many medications can take a month to three months to fully work, yet some work much faster, most likely not before next Thursday though).

Right now what you're doing is best, keep up with the testing, continue avoiding foods that make your symptoms worse and if still possible, try to get flight insurance on those plane tickets in case you have an emergency.

I'm honestly hoping its pain from stressing over the proposal and trip. Hope you get answers soon and that you're able to go to Italy pain free. Good luck and keep us posted.
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05-19-2013, 03:39 AM   #3
David
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Welcome to the community. I'm sorry to hear of your health issues

I think it's way too early to assume IBD, yes. I'd be surprised if it is. But I hope they get your issue figured out soon, that must be miserable
05-19-2013, 07:14 AM   #4
Gculk
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Uhhm... You have upper abdominal pain and are H. Pylori positive. I think some antibiotics are in order and you should be good to go.

These symptoms are pretty classic of H. Pylori. Why aren't they treating the H. Pylori? o.o
05-19-2013, 10:18 AM   #5
NotsureNY
 
Join Date: May 2013
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Hi NotsureNY and welcome to the forum!

Were biopsies taken during your upper endoscopy? Probably too soon for the results to be back on those though. I'm surprised they didn't do a colonoscopy as well if they were doing the upper scope (a colonoscopy is a key test to have done for a Crohn's diagnosis, with biopsies) since your colon (the transverse section) does go across your upper abdomen.

Its great that you have family who are able to get testing done for you sooner unfortunately for many people a diagnosis of IBD can take a while (for me it took 3 months but many others are still undiagnosed after years of testing) not to mention finding the right treatment plan for you will also take some time (many medications can take a month to three months to fully work, yet some work much faster, most likely not before next Thursday though).

Right now what you're doing is best, keep up with the testing, continue avoiding foods that make your symptoms worse and if still possible, try to get flight insurance on those plane tickets in case you have an emergency.

I'm honestly hoping its pain from stressing over the proposal and trip. Hope you get answers soon and that you're able to go to Italy pain free. Good luck and keep us posted.
Jennifer,

Thanks for your reply!

No biopsies were taken. At that point, I had it stuck in my mind I might have an ulcer. From my symptoms my brother and GI agreed I needed an Upper Endoscopy but they did not find anything. GI recommended I take a probiotic and that I should be fine - avoid fatty foods/dairy/alcohol but that I could lightly drink in Italy (I am dying for authentic italian food/wine!) That is why no colonoscopy was done at that time. I was told colonoscopy should be towards tail end of my tests - if HIDA w/ CCK is negative, next is Capsule Endoscopy then Colonoscopy if necessary. At least from the recommendation of my brother. I had almost flew to California just to go to hospital he works at to get everything done in time before I left!!!

I, too, hope it has been from recent job stress and this upcoming big trip/event. I truly appreciate the info you gave and I am very glad I found this forum.
05-19-2013, 10:27 AM   #6
NotsureNY
 
Join Date: May 2013
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Uhhm... You have upper abdominal pain and are H. Pylori positive. I think some antibiotics are in order and you should be good to go.

These symptoms are pretty classic of H. Pylori. Why aren't they treating the H. Pylori? o.o
The general practitioner's recommended the Prev-Pak/treatment for H. Pylori (My mother and a doctor she initially referred me to for a examination and blood test in the begining) My brother and the GI both did not.

H Pylori is in 40% of people - and usually is dormant. If it is not, it usually causes inflamation and/or ulcers. B/c none were present when I had my upper endoscopy there was no reason to treat it (from what I read and from what my brother has told me)

Treating it can cause further issues as it will kill off good anti-bodies and make my stomach lining more susceptible to inflammation and acid reflux without further medicines. This is only reason I have not started the medicine regimine as it seems it would be unnecessary and possibly further complicate things

I will ask the GI again, if this could be the reason, and if so, I will start meds immediately.

Helicobacter pylori is a corkscrew-shaped bacteria that resides in the stomach and intestine of more than half of the world's population; most people have no symptoms. But for those people who do, H. pylori can cause a number of uncomfortable and painful symptoms including bloating, gas, abdominal pain, and vomiting. If that isn't bad enough, the microscopic bug can also cause severe medical conditions such as ulcers and gastric cancer. Treatment typically consists of a combination of medications, and diagnosing the bacteria is pretty straightforward using stool, blood, urea breath tests, or an endoscopic exam.
05-19-2013, 04:07 PM   #7
Gculk
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Yes, in most it is usually asymptomatic - from what I've read it always causes some gastritis, whether low grade or not. From HopkinsMedicine.org

"Soon after being infected with H. pylori, most people develop gastritis--an inflammation of the stomach lining. "

It may be that you have low grade inflammation and are simply sensitive, or it may be that the inflammation simply wasn't present that day, and since there were no ulcers nothing was seen.

You state that in most people the bacteria is inert. Well, the 'most' is 80% - a pretty good most, but far from few having symptoms. If we were to ask how many people who have symptoms AND are H. Pylori positive had symptoms because of H. Pylori, I would venture a guess that it would be quite a bit higher.

That said - what food causes the pain, and how long after eating? That could point more to gall bladder. Also, where in upper abdomen? Give best description possible.

Best of luck
Nathan
05-19-2013, 04:28 PM   #8
Clash
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I was H. pylori positive(It is my son that has CD and this was before his dx) and experiencing the symptoms you have listed as well as the pain gradually extended from upper abdominal all the way through to my back which is when I was referred to GI. Upper Endoscopy/colonoscopy were done. He found mild gastritis but still debated starting regimen for some of the reasons you stated plus he thought the gastritis was too mild to cause my symptoms, no ulcers were found. We chose to start the treatment regimen and my symptoms were gone shortly there after.

Good luck I hope you find relief for you trip abroad!!
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05-19-2013, 04:48 PM   #9
NotsureNY
 
Join Date: May 2013
Location: New York, New York
I was H. pylori positive(It is my son that has CD and this was before his dx) and experiencing the symptoms you have listed as well as the pain gradually extended from upper abdominal all the way through to my back which is when I was referred to GI. Upper Endoscopy/colonoscopy were done. He found mild gastritis but still debated starting regimen for some of the reasons you stated plus he thought the gastritis was too mild to cause my symptoms, no ulcers were found. We chose to start the treatment regimen and my symptoms were gone shortly there after.

Good luck I hope you find relief for you trip abroad!!

Clash,

GI said they found "nothing" when doing the upper endoscopy. He told me lay off fatty foods, alcohol, and limit dairy. He also said to stop Nexium/Carafate and just take a probiotic (on Florastor)

I was worried about starting regimen bc I heard of side effects of it possibly causing me to get acid reflux or weakening my stomach lining from killing off antibodies.

How long after you started your regimen do you estimate it went away? I have a test tomorrow for Gallbladder and should hopefuly have results for biopsy from endoscopy by now (Assuming GI took one when down there...i assumed it would be compulsory )
05-19-2013, 05:06 PM   #10
NotsureNY
 
Join Date: May 2013
Location: New York, New York
Yes, in most it is usually asymptomatic - from what I've read it always causes some gastritis, whether low grade or not. From HopkinsMedicine.org

"Soon after being infected with H. pylori, most people develop gastritis--an inflammation of the stomach lining. "

It may be that you have low grade inflammation and are simply sensitive, or it may be that the inflammation simply wasn't present that day, and since there were no ulcers nothing was seen.

You state that in most people the bacteria is inert. Well, the 'most' is 80% - a pretty good most, but far from few having symptoms. If we were to ask how many people who have symptoms AND are H. Pylori positive had symptoms because of H. Pylori, I would venture a guess that it would be quite a bit higher.

That said - what food causes the pain, and how long after eating? That could point more to gall bladder. Also, where in upper abdomen? Give best description possible.

Best of luck
Nathan
Nathan,

Thank you for the info

I am getting more hopeful it is H Pylori. My mother and other doctor told me to start the regimen but my brother (and GI) kept saying no...only reason I have listened to him over the others is he is more up to date, younger, and works in hospital setting while the other two are older and dont encounter cases like this often.

Pain is upper abdominal in center, burning/gnawing pain. Pains vary. I have had pain immediately after eating or sometimes 20-45 min.

Food Causing Pain/Discomfort:
  • Apple - I ate half an apple and had 5-6 sharp pains but subsided - not gnawing/burning/long lasting
  • Chili - had one cup and had severe pain for 1.5 hours followed by slightly milder pain for another 1-1.5 hours
  • French Fries - I had 10 skinny/small french fries and that put me in pain for 1-1.5 hours.
  • Ice Cream (Slow Churn, low fat, sugar free) - fine in small amount but when I had a lot - I had lot of gas and diarrhea - but prob from the lactose (taking lactaid with dairy now)
  • Lentil soup - wasnt painful but was pretty uncomfortable - set in after 45-60 minutes
  • Everything Bagel (other breads didnt seem to do anything but maybe it was the seeds?)
  • Tzatziki sauce - greek yogurt sauce with dill/garlic etc - one tablespoon gave me pain
I would have more listed under "causing pain" but the first two days I did not track it bc whatever I was eating was causing me pain. I have had some bloating - and taking Gas-X for that.

Safe Foods:
  • Baked Potatoe (W/ no fat sour cream and sprinkle of shredded cheese)
  • Soup/Broth (Chicken Noodle,Chicken w/ Rice)
  • Cream of Wheat
  • Ground Beef/Burger (Sirloin/Lean Meat burger with bun)
  • Fruits (Strawberries, Blueberries, Banana, watermelon)
  • Muscle Milk Light (Chocolate - ordered more flavors to try)
  • Pretzels
  • Jello


As of now - I went back on the nexium to be safe, taking gas-x after meals and I

Last edited by NotsureNY; 05-19-2013 at 07:05 PM.
05-19-2013, 05:10 PM   #11
NotsureNY
 
Join Date: May 2013
Location: New York, New York
I will contact GI tomorrow to confirm if he took a biopsy (but no ulcer so maybe a culture) and if results came in.

Last edited by NotsureNY; 05-19-2013 at 05:33 PM.
05-19-2013, 05:23 PM   #12
Clash
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It was about four years ago but I think I started noticing a difference within two weeks but since the regimen does include a ppi and I did have mild gastritis that could account for my improvement in a short time.
05-19-2013, 05:53 PM   #13
NotsureNY
 
Join Date: May 2013
Location: New York, New York
It was about four years ago but I think I started noticing a difference within two weeks but since the regimen does include a ppi and I did have mild gastritis that could account for my improvement in a short time.
My brother still says he does not believe my symptoms are lining up with H Pylori. I will contact GI tomorrow to confirm if they did a culture and if results are back. It seems that Fat is a big trigger (10 small french fries = 1-1.5 hours of pain, a cup of chili = 2+ hours of pain etc)

I have the HIDA w/ CCK to confirm whether or not it is my Gallbladder tomorrow and I should also receive my 2nd round of blood work results to re-confirm it is not my pancreas.

Going to try plain pasta tomorrow for lunch (should be ok bc chicken noodle was fine) and maybe try a tablespoon of tomatoe sauce in the evening. My epic test will be to try a slice of pizza on wednesday night - day before I leave for italy. Geez, I will be upset if I cant feast on pizza/pasta in italy.

...crossing my fingers!!!!!
05-19-2013, 06:19 PM   #14
Gculk
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It could be gall bladder, or it could be H. Pylori. I'd be on the fence between them, mostly just because you have tested positive for H. Pylori. The food triggers point to gall bladder problems, but it's certainly not certain.

Hopefully you get it sorted quick. Still, I very much doubt it'll be a long-term problem such as IBD =].
05-19-2013, 06:31 PM   #15
NotsureNY
 
Join Date: May 2013
Location: New York, New York
It could be gall bladder, or it could be H. Pylori. I'd be on the fence between them, mostly just because you have tested positive for H. Pylori. The food triggers point to gall bladder problems, but it's certainly not certain.

Hopefully you get it sorted quick. Still, I very much doubt it'll be a long-term problem such as IBD =].
I guess ill find out tomorrow when they inject the stuff to contract my gallbladder during test. If i am lying there in pain for 45 min we found our culprit
05-19-2013, 07:18 PM   #16
Gculk
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Bahaha golden =D

Best of luck
05-19-2013, 09:12 PM   #17
NotsureNY
 
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Tried to test out a low/no fat meal.

Baked potatoe w no fat sour cream went ok


White pasta w tomatoe sauce - small amount...1.5 hrs of pain!!!!
For first time I had nausea. Had chills, which have occurred a few times in past 8-10 days.

I'm just awaiting the results tomorrow of HIDA and blood work.
05-20-2013, 06:19 AM   #18
Maree.
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Are you having reflux issues, tomato even is small amounts is a reflux trigger so that might have been what caused you grief .

My son who has reflux issues (beyond that currently undiagnosed) has major issues with fats and anything acidic. Tomato, citrus fruits, soft drinks all cause severe pain.
05-20-2013, 09:20 AM   #19
NotsureNY
 
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It may have been but...

I did have nexium a few hours prior, took mylanta and gas x after eating too. Went to sleep w chills and woke up 3 hrs later with similar but a little more milder pain.

I had my HIDA w CCK today - my GB EF is very low, 7% so may need to remove my gallbladder. This could be Chronic ACalculous cholecytisis.

Blood work is all normal, including CRP. Have GI report from upper endoscopy and they believed it was viral gastritis and pending 3 biopsies results. Hopefully he did h pylori urease but contacting him today to follow up regarding results or see if I need breath test.

As of now, my brother says I do not need a capsule endoscopy. Hopefully the results today rules out a IBD/IBS and I can go on my trip if I am careful about what I eat and stay away from the good stuff

Thanks for all of your suggestions and input!

Last edited by NotsureNY; 05-20-2013 at 10:18 AM.
05-20-2013, 11:02 AM   #20
Gculk
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Ahh, that's decent. Sounds like you've got it covered. =) Sucks that you might have to have it out, but better than IBD or whatever.
05-20-2013, 12:08 PM   #21
NotsureNY
 
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Ahh, that's decent. Sounds like you've got it covered. =) Sucks that you might have to have it out, but better than IBD or whatever.
Yeah, as of now, they are saying the 7% GB EF (Ejection Factor) as opposed to normal being above 30%, suggests I have either:

Chronic Acalcuous Cholecystitis or Biliary dyskinesia

Which most likely means it has to come out. Waiting on the biopsy results to see if H Pylori is playing any role. My primary care (and mother) said she has read that H Pylori can cause inflammation of gallbladder. So going to see if I should start antibiotics or not now.

I have scheduled follow up with GI for tomorrow late afternoon (earliest available) and will proceed accordingly. Hopefully this will rule out IBD/IBS.

Looks like no beer, wine, gelato, pasta, or pizza in italy but its ok - this trip is more for my girlfriend/future fiance and I will be happy just to be able to go - even if I have to drink powdered shakes, soups, and fruit the entire time.
05-21-2013, 11:43 AM   #22
NotsureNY
 
Join Date: May 2013
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Scheduled for surgery tomorrow at 930am I moved my flight to Sunday. Looks like if post op is good I'm still going to salvage most of my trip!!!!

I hope it's the GB causing these symptoms n they are gone tomorrow. Yesterday, baked potato which was safe before gave me massive pain.
05-21-2013, 01:07 PM   #23
Jennifer
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Hope the surgery goes well and does the trick! Keep us posted.
05-22-2013, 06:31 PM   #24
NotsureNY
 
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Update!

I had Surgery today at 9:30AM, left Hospital by 3PM, now I'm home.

Gallbladder looked good but when they opened it after removal there was bile sludge in it.

I've had soup, bread, jello, crackers - so far, so good. Im gonna try a small amount of trigger food friday night to see if really was 100% GB's fault.
05-23-2013, 06:21 PM   #25
Gculk
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Cool. =] Good to hear something seems amiss with it. Hopefully all's well now. Enjoy the trip.
05-24-2013, 05:56 AM   #26
dannysmom
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Thanks for the update. I hope you feel better soon!
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05-24-2013, 06:20 AM   #27
dannysmom
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Just curious ... was your pain in your upper right side? Did pain increase when doctors press on your abdomen? (My son's pain is more central ... but he has the same food intolerances as you)
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