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Posted 8/18/2021 4:27 AM (GMT 0)
UC since 2020. In remission since the end of 2020, currently on Entyvio. I lost a lot of weight while I was in flare. I can not gain any weight since. I have a lot of pain on my left side between my rib cage and hips which is constant since I was diagnosed with UC. I have a good appetite and eat quite a lot but also avoid a lot of foods after I was diagnosed with UC. With the amount of food I eat I would gain weight before UC. I feel like all that goes in all comes out.
My stool is a mixer of non formed and formed more like a soft pile, a lot of times stool sticks to the sides of the toilet bowl. A see a lot of water surrounding the poop on the toilet paper and it is shiny. I experience a lot of bloating and gas after food.

Tests this year.
MRI of abdomen and pelvis with contrast was normal.
SIBO test was negative
Normal pancreatic-elastase elisa stool test
Positive fecal fat test

My GI told me to talk to nutritionist. Malabsorption frightens me.
Any advice on what to take? Any other tests to check anything?
Posted 8/18/2021 4:52 AM (GMT 0)
Fat malabsorption shouldn't happen with well-controlled UC.

Have you had blood tests to check for celiac disease?

If celiac is negative, the next things to focus on are the gallbladder and pancreas.

Have you had an ultrasound of your gallbladder and/or an MRI of the gallbladder and pancreas (called an MRCP)?
Posted 8/18/2021 1:00 PM (GMT 0)

beave said...
Fat malabsorption shouldn't happen with well-controlled UC.

Have you had blood tests to check for celiac disease?

If celiac is negative, the next things to focus on are the gallbladder and pancreas.

Have you had an ultrasound of your gallbladder and/or an MRI of the gallbladder and pancreas (called an MRCP)?

Beave, thank you for your input. I was tested for celiac by endoscopy and biopsy in the past multiple times but not recently.
I had catscan of abdomen and pelvis with contrast that was done a year ago. Which says
BILIARY SYSTEM:
There is no biliary ductal dilatation.
The gallbladder is unremarkable.
SPLEEN/PANCREAS:
The spleen is grossly unremarkable.
The pancreas is grossly unremarkable.

All was unremarkable also on MRI from 2 months ago

According to my GI gallbladder would give me pain on the right side and not the left.
Since I have normal pancreatic-elastase elisa stool test GI says my pancreas is functioning fine and didn’t want to do the amylase and lipase blood work.
Should I push for MRCP? I doubt my GI will agree.
Posted 8/18/2021 4:56 PM (GMT 0)
I would push for MRCP.

q
Posted 8/26/2021 7:54 PM (GMT 0)
My GI will be checking my small intestine. Waiting for insurance approval.
Posted 9/3/2021 4:13 PM (GMT 0)
My Lipase is 409 (upper range value 393) which was 31 when I was diagnosed with UC last year.
My GGT is 64 (upper range value 55). This is the 1st time I see GGT when they tested liver. Previously I only had albumin, bilirubin, globulin, AST, ALT tested. I guess it depends on the lab what they add to hepatic panel?

Should I be concerned about Lipase and GGT being elevated or this is something to do with IBD and considered to be expected since the value is not 2x or 3x?

The doctor told me the results, he didn't have an explanation. We will continue with the plan to test the small intestine when insurance approves. According to our best friend google elevated GGT may also be caused by alcohol abuse or use of drugs that are toxic to the liver.
I don't drink. I am on Entyvio only. I started to take Health Concerns supplement (liver and gallbladder formula) 1.5 weeks before I did the blood test. This formula is helping with bloating, gas, and I have formed stool. Prior to that I tried 'Enzymedica Digest Basic + Probiotics' for a week which kind of helped with bloating and gas but not stool. Do you think these supplements could've altered the blood work results?
Posted 9/3/2021 7:38 PM (GMT 0)
The left sided pain here may be the important point....can u say more about it....does it refer to your back?...to the front of your body or behind?....does any of it get as far up as the high left rib cage....is it more flank than back pain?....are there any spasms or cramps associated with it?....does it feel muscular?....can u say when the pain worsens and what do u think is the cause?....eg sleeping on it? after meals?
Posted 9/4/2021 1:26 AM (GMT 0)
Looking down
The pain is in the front below my rib cage 1/3 right from my left side and curves down to the left ending ¼ from my side a bit up from belly button level. The pain refers to my left shoulder blade. A lot of times the pain is pretty strong under my shoulder blade. The pain definitely worsens after food ~30 mins after I start eating. It hurts right now, radiates to my left shoulder blade and it has been 3 hours after I ate. It hurts all day long with different severity. Not sure if all of this makes sense. Too bad can not draw here or attach a picture.
Posted 9/4/2021 2:40 PM (GMT 0)
Are you certain this pain is not muscular. It could be that inflammation in your colon is affecting the musculature and fascia in that area. Another possibility is that this is referred colon pain.

I think you need to be guided by your doctor here. An scan of the small bowel sounds like the way to go first.

Any muscular spasms to your discomfort?
Posted 9/4/2021 9:15 PM (GMT 0)
I am sure it is not muscular. I get a lot of other pains on the left and they are spasms (which are not so bad atm as the supplement I am taking is helping) but the pain that radiated to my shoulder blade is not spasmatic. It worsens with food and disappears if I skip lunch but comes back after dinner. I really have to take a long brake from food for that pain to calm down (like skip lunch). I was thinking may be this is stomach since I did have erosions during my endoscopy in Dec 2020. I took PPI though for a longer time and the stomach pain settled down so I thought it healed. I am concerned about my pancreas. I am not sure how pancreas pain feels like. Since the MRI was normal my GI is not in the rush to do anymore image tests including MRCP.
GI didn't even want to do amylase and lipase blood work for which I asked a while ago and kept asking at each visit. When I went to get my Entyvio infusion I asked the nurse to check as it was time for a regular blood work they do every 6 months while on biologic.
Seems like MRI and/or MRCP will show tumors, cysts and blockages. I don't think they show an inflammation unless it is a very bad one and walls get swollen. If it was bad the pain would be excruciating and I would end up in the hospital. If this is just a small inflammation I am not sure how to check. The trick is to catch it early whatever it is.
The plan is to have a capsule endoscopy to check the small bowel. I am worried. I read some older posts in this forum about the capsule getting stuck.
Posted 9/5/2021 11:39 AM (GMT 0)
A normal MRI is pretty conclusive here. I would follow your GI's advice on the matter but I would press him for follow up and not to leave things lie.

When my UC was bad 10 or so years ago I had similar left sided issues as you during that time. I ascribed them to a sports injury however it was noticeable that when my UC was out into remission these left sided issues also went away. I'd be careful not to rule too much out on the muscular or nerve side. Pain presents in very different ways and it is a complex process.

I'd be interested in hearing further about your follow up on this issue. Please do post more.
Posted 9/5/2021 5:43 PM (GMT 0)
I would push for an MRCP...still.
q
Posted 9/10/2021 1:16 AM (GMT 0)
I had my physical and asked my PCP to check my lipase and GGT again. I fasted and didn't take my supplements a day prior to blood work.
My lipase was 42 ( upper range value 60) and GGTP 43 ( upper range value 45). This was done at a different lab than the results I posted earlier. Maybe fasting did the trick? It is strange that the results were normal a week later.
I also had a test done to check for Entyvio antibodies. It has been 9 days and my doctor still doesn't have results. I believe the test was sent to Labcorp. Does anybody know how long it takes for results to come back?
I started Entyvio in June last year. This is the 1st time this test was done. How often should it be checked?
I still don't have an approval for capsule endoscopy. Supposedly my doctor's office submitted paper work a month ago but my insurance claims they don't have anything.
I try to eat a lot of starch but no success in gaining weight. It won't go over 100 lb no matter how hard I try (eating rice, bread, potatoes, pasta)
Posted 9/10/2021 3:17 PM (GMT 0)
I’m on entyvio and have only had my levels checked once. My drs thinking is to test only if there are problems or symptoms.
Posted 10/12/2021 12:09 AM (GMT 0)
Insurance wouldn't approve capsule endoscopy to check the small intestine after so many months. I guess you need to have crohn's diagnosis for them to approve.
I had endoscopy and colonoscopy done. Waiting for my pathology report. According to my GI I have normal colon and normal terminal ileum. Entyvio test also came back with good levels and no developed antibodies.
Endoscopy showed erosive gastritis. It explains my pain. But doesn't explain fecal fat/malabsorption and weight loss.
This was my 3d round of endoscopy/colonoscopy since 2020 when I was diagnosed with UC. Each time endoscopy showed stomach erosions. I took PPIs (different ones) last year and this year. Taking famotidine. Since I was diagnosed with UC I am on diet, seeing nutritionist. Erosions are not healing. What to do? Has anybody experience persistent stomach erosions?
I will be having MRCP. Thank you quincy.
Posted 10/12/2021 5:00 AM (GMT 0)
For the erosive gastritis, what have the biopsies there shown? That would be important to know.

Do you take NSAIDs like aspirin or ibuprofen? Do you drink a lot of alcohol? Those can cause erosive gastritis.

Other causes are h. pylori infection (the bacteria that causes stomach ulcers can also cause gastritis), or Crohn's disease (I have Crohn's in my stomach that causes mild gastritis), and something called Zollinger-Ellison syndrome.

Those last two (Crohn's and Zollinger-Ellison) could lead to fat malabsorption. The MRCP is a good thing - it should help diagnose Z-E in the unlikely event that that is what you have.

One last question: How far did they go in for the upper endoscopy? Did they enter and view the entire duodenum? If so, was that clear?
Posted 10/12/2021 3:01 PM (GMT 0)

beave said...
For the erosive gastritis, what have the biopsies there shown? That would be important to know.

Do you take NSAIDs like aspirin or ibuprofen? Do you drink a lot of alcohol? Those can cause erosive gastritis.

Other causes are h. pylori infection (the bacteria that causes stomach ulcers can also cause gastritis), or Crohn's disease (I have Crohn's in my stomach that causes mild gastritis), and something called Zollinger-Ellison syndrome.

Those last two (Crohn's and Zollinger-Ellison) could lead to fat malabsorption. The MRCP is a good thing - it should help diagnose Z-E in the unlikely event that that is what you have.

One last question: How far did they go in for the upper endoscopy? Did they enter and view the entire duodenum? If so, was that clear?

I am still waiting for biopsies. I don't take NSAIDs. If needed I take tylenol. I don't drink alcohol. I drink only water and herbal tea. I specifically asked my GI if I have Crohn's in my stomach. He said from what he saw I don't have it. But again it is one person/GI opinion.

beave, how did they determine you have Crohn's in your stomach?

I asked my GI after procedure about esophagus and duodenum since only antral erosions were listed. GI said both were fine. This was EGD not ERCP. Don't they always include duodenum as the last point with EGD?

I started PPI today. I was on famotidine 20mg X 2 a day for a month prior + very bland diet (rice, potatoes, oat meal, cream of wheat, boiled or grilled chicken, fish, overcooked greens, cooked carrots, bread, gluten free brown rice pasta, water and camomile tea). My diet has been boring since last year. The picture of antrum looks horrific on the picture, completely erosive.
Posted 10/12/2021 5:02 PM (GMT 0)
I dont think MRCP will diagnose esophageal issues...it's a biliary MRI..but your GI could also request it be imaged at the same time. Did you have biopsies of your esophagus and stomach?... looking forward to the results.

q
Posted 10/12/2021 11:12 PM (GMT 0)

quincy said...
I dont think MRCP will diagnose esophageal issues...it's a biliary MRI..but your GI could also request it be imaged at the same time. Did you have biopsies of your esophagus and stomach?... looking forward to the results.

q

MRCP was ordered to root cause fecal fat.
Btw, I had pancreatic-elastase elisa stool test again since sometimes it is not accurate and for the 2nd time it was normal.
GI didn't see any issue with esophagus.
Tests were done yesterday. I probably will get the pathology report next week.
Posted 10/13/2021 5:01 AM (GMT 0)

GloriaD said...

I am still waiting for biopsies. I don't take NSAIDs. If needed I take tylenol. I don't drink alcohol. I drink only water and herbal tea. I specifically asked my GI if I have Crohn's in my stomach. He said from what he saw I don't have it. But again it is one person/GI opinion.

beave, how did they determine you have Crohn's in your stomach?

I asked my GI after procedure about esophagus and duodenum since only antral erosions were listed. GI said both were fine. This was EGD not ERCP. Don't they always include duodenum as the last point with EGD?

I started PPI today. I was on famotidine 20mg X 2 a day for a month prior + very bland diet (rice, potatoes, oat meal, cream of wheat, boiled or grilled chicken, fish, overcooked greens, cooked carrots, bread, gluten free brown rice pasta, water and camomile tea). My diet has been boring since last year. The picture of antrum looks horrific on the picture, completely erosive.

Let us know what the biopsy report says when you get it.

With upper endoscopies, they usually go into the duodenal bulb (the very first part), but they may or may not go past that.

For me, the doc did a push enteroscopy through the stomach and all the way through the duodenum, into the beginning of the jejunum. Visible inflammation was seen in the duodenum and was confirmed on biopsies. The stomach looked ok but biopsies showed inflammation there too, consistent with Crohn's.
Posted 10/25/2021 1:12 AM (GMT 0)

beave said...
For the erosive gastritis, what have the biopsies there shown? That would be important to know.

Do you take NSAIDs like aspirin or ibuprofen? Do you drink a lot of alcohol? Those can cause erosive gastritis.

Other causes are h. pylori infection (the bacteria that causes stomach ulcers can also cause gastritis), or Crohn's disease (I have Crohn's in my stomach that causes mild gastritis), and something called Zollinger-Ellison syndrome.

Those last two (Crohn's and Zollinger-Ellison) could lead to fat malabsorption. The MRCP is a good thing - it should help diagnose Z-E in the unlikely event that that is what you have.

One last question: How far did they go in for the upper endoscopy? Did they enter and view the entire duodenum? If so, was that clear?

GI didn't view the entire duodenum only 10 cm. GI said to go further would require some special tooling.
Pathology report (upper endoscopy) states no active gastritis neither in antrum or body of the stomach. All looks good. Biopsy was taken: duodenum, stomach antrum, stomach body, esophagus distal, esophagus proximal.

How is it possible to have erosive gastritis, erosions with heme stains with normal biopsy? The biopsy from 2020 indicates "gastric type mucosa" for antrum and stomach body. Has anybody had anything like this?
I feel like my pathology report is messed up. What do you think? I sent my doctor a message to check with the lab.

Pathology report (colonoscopy) all is good also. My GI said he pushed 10 cm further into ileum, no sign of Crohn's. My UC is under control with Entyvio.

MRCP was normal.

In meantime, I am down to 95 lb and can not gain weight. It is a puzzle why I have fecal fat. I will be following up with my doctor but was wondering if anybody on this forum have any advice what else to test or who to see, etc?
Posted 10/25/2021 5:36 AM (GMT 0)
Hmm, I'm not sure what to tell you. I don't understand how the GI can say there was erosive gastritis seen on endoscopy but biopsies were normal - unless the gastritis is spotty, and they happened to biopsy a spot that was clear and not inflamed. I would expect them to biopsy an area with visible gastritis, not a clear spot. This needs clarification from your doctor.
Posted 12/10/2021 12:02 PM (GMT 0)
GloriaD....how are you doing on this issue. I've recently posted on similar issue as yours. Any updates? Have you gotten to the bottom of this? in particular what was causing your left sided pain?
Posted 12/12/2021 1:11 AM (GMT 0)
Charlie, I went through colonoscopy and endoscopy again and I am still in remission with UC but have erosive gastritis. My left pain right now is under my left rib which radiates to my shoulder blade.
The other left pain at least the most of it just faded out on its own. I had all of it what you described in your other post. I am on a very strict GERD diet right now, maybe it helped.
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