Questions to ask GI

[dynamo83]

Hi all, apologies for the long intro post but I want to make sure I am properly advocating for myself and asking the right questions. I hope this is the right forum section for this post.

I'm a 38 y.o. female in Canada, normal BMI, family history of ulcerative colitis, and personal history of endometriosis with hysterectomy in 2008. It took 7 years of suffering before I finally got a diagnosis and surgical help for widespread Stage 3 endo (including on my bowel), so I want to be sure I avoid a similar scenario with my digestive issues.

I finally got a telehealth appointment with a GI specialist last month after years of escalating GI problems. I'm not even sure if I accurately described my history to him over the phone... I was rambling a bit. But whatever I did tell him, he is suspecting Crohn's and I have a colonoscopy scheduled 2 weeks from now. He tested me for celiac already, which was negative. Upper GI ultrasound and barium swallow showed nothing except mild reflux (these were ordered by my GP because I developed LPR last year). A quick rundown of my symptoms and history:

2015-2016 -- started getting abdominal pain, mostly lower right, thought it might be endo coming back. Called surgeon, he said highly unlikely. Ignored as maybe ovarian cysts or something. Some bouts of loose stool, nothing dramatic.

2016 - developed anal fissures and skin tags. Went to proctologist for dx. Was given ointment from compounding pharmacy. Pain got better. Was offered surgery, decided no. Took stool softeners to keep stool soft until blood stopped.

2017 - Appendicitis. Ignored for a week, thinking ulcers, pain near belly button. Tried omeprazole, no improvement. Pain got worse, moved to lower right. Went to hospital, had appendectomy. CT scan also showed thickening of terminal ileum and cecum, recommended follow up. Never followed up because I moved and then forgot.

2016-2019: started getting pain after eating (30 mins to 1 hour after starting to eat) right side middle to lower abdomen. Could not identify triggers. Lay down on couch until it went away. Also started getting occasional severe but fleeting (10 to 20 seconds) episodes of stabbing rectal pain.

2020: developed chronic cough in late March, several bouts of night sweats and low grade fever (100F). Pain after eating sometimes still, though waxes and wanes. Rash on shins... small red bumps, slightly tender but not itchy. Thought it was Covid, tested negative. Increasingly loose stools.

2021: a couple instances of crippling abdominal pain not associated with eating (like I could not stand up straight, lasted an hour or so). Also dxed w/ LPR as cause of cough by ENT. Barium swallow and upper GI ultrasound normal except for mild reflux.

Symptoms in general:
5+ years of loose stool, periods of increasing frequency and urgency. Type 6 most of the time. Now sometimes 4-5 BMs per day, but usually 2-3. Sometimes very urgent. Never constipation, rarely a solid poo at all.

Abdominal pain and tenderness, mostly around navel and below/right. Sometimes severe, sometimes nausea.

Vit D deficiency for years, despite supplements and outdoor recreation... not seasonal.

Gas/bloating/gurgling often

Anal fissures and skin tags.

LPR

Occasional severe stabbing rectal pain

Feeling like I have to poop sometimes, but no poop

Occasionally unexplained skin rashes on abdomen or lower shins. Not itchy, small red bumps. No blisters.

Okay, that's all. So my question is: if my scope comes back clean, what sort of things should I be asking my GI on follow-up? What might be relevant and/or what should I ask for? I'm sure some of these things I did not mention to him, since I'm always afraid of being dismissed as a hypochondriac (trauma from my years of being dismissed for crippling endo, I'm sure). He did mention on the phone if the scope comes back clean that he'd probably order a CT scan... anything else I should request in terms of testing? I live in a rural area, so I'm fairly sure he is not an IBD specialist...

Thanks in advance. I'm really tired of having constant GI problems and would like to get to the bottom of it, whatever it is. Endo forums were a godsend when I was waging that battle, so I thank you all for your time and support.

 

[Scipio]

2017 - Appendicitis. Ignored for a week, thinking ulcers, pain near belly button. Tried omeprazole, no improvement. Pain got worse, moved to lower right. Went to hospital, had appendectomy. CT scan also showed thickening of terminal ileum and cecum, recommended follow up. Never followed up because I moved and then forgot.


Okay, that's all. So my question is: if my scope comes back clean, what sort of things should I be asking my GI on follow-up? What might be relevant and/or what should I ask for?

Hi Dynamo,
It certainly looks like you've suffered a lot. And it also looks like a lot of your symptoms are consistent with IBD, although IBD is almost never diagnosed based on symptoms alone, since there are other things that can cause these symptoms.

I copied your point about the appendicitis because that is exactly what happened to me. I had a ruptured appendix and emergency appendectomy. The surgeon spotted on X-ray some thickening of the small bowel in the ileum area and told me to follow up with a GI - which I did not do. My Crohn's was diagnosed 1 year later thanks to a severe case of anemia. It was through the investigation of the cause of the anemia that the Crohn's ulcers were finally spotted in the small bowel (the colonoscopy was clear).

As for follow-up assuming a clean scope, ask the GI what the plan is to resolve your symptoms. Suggest getting a look at your small bowel via MRE and/or capsule camera endoscopy (pill cam). That's how mine was finally diagnosed - pill cam.

The good news is that if you get diagnosed with IBD there are several good medicines available now that that can get you into a solid remission and reduce your symptoms to zero or near zero and help you avoid surgery. Uncontrolled or untreated Crrohn's almost always eventually leads to having some devastated part of your bowel surgically removed. And there are more new drugs coming online all the time.

And more good news is that there are some excellent, in fact world renowned, IBD specialist GIs in Canada. I can recommend some for you if you live anywhere near either Toronto or Montreal.

But the key step is getting a diagnosis. Once you have that the path forward is much clearer. And the key first step to a diagnosis is getting that colonoscopy. Let us know how that comes out. Good luck!

 

[dynamo83]

Hi Dynamo,
It certainly looks like you've suffered a lot. And it also looks like a lot of your symptoms are consistent with IBD, although IBD is almost never diagnosed based on symptoms alone, since there are other things that can cause these symptoms.

I copied your point about the appendicitis because that is exactly what happened to me. I had a ruptured appendix and emergency appendectomy. The surgeon spotted on X-ray some thickening of the small bowel in the ileum area and told me to follow up with a GI - which I did not do. My Crohn's was diagnosed 1 year later thanks to a severe case of anemia. It was through the investigation of the cause of the anemia that the Crohn's ulcers were finally spotted in the small bowel (the colonoscopy was clear).

As for follow-up assuming a clean scope, ask the GI what the plan is to resolve your symptoms. Suggest getting a look at your small bowel via MRE and/or capsule camera endoscopy (pill cam). That's how mine was finally diagnosed - pill cam.

The good news is that if you get diagnosed with IBD there are several good medicines available now that that can get you into a solid remission and reduce your symptoms to zero or near zero and help you avoid surgery. Uncontrolled or untreated Crrohn's almost always eventually leads to having some devastated part of your bowel surgically removed. And there are more new drugs coming online all the time.

And more good news is that there are some excellent, in fact world renowned, IBD specialist GIs in Canada. I can recommend some for you if you live anywhere near either Toronto or Montreal.

But the key step is getting a diagnosis. Once you have that the path forward is much clearer. And the key first step to a diagnosis is getting that colonoscopy. Let us know how that comes out. Good luck!

Hi Scipio,

Thanks for your response and encouraging words. Sounds like indeed you had a similar situation with the appendicitis! At the time it did not occur to me that it could be related to something more nefarious (I mean, lots of people get appendicitis), or that my fissures could also be related. The LPR and fatigue were my last straw... I'm otherwise healthy, not at high risk for reflux, eat healthy home-cooked food, exercise daily, etc. It wasn't until the GI doc said he suspects Crohn's that the light bulb went off, and then I thought OMG, all this gastro stuff could be connected. For years.

Thank you for the suggestions. I will ask the doc about those things if my scope come back clean. I'll let you know what I find out! Are you in Canada too? I'm in BC, so nowhere near Toronto. Vancouver probably has a decent specialist if IBD is indeed what is going on with me. I learned with endo that specialists can make a huge difference!

 

[Scipio]

Nope, not in Canada. I live in San Diego, California. But I've read enough IBD research papers to learn who and where some of the big names are.

 

[paddywack]

Suggest getting a look at your small bowel via MRE and/or capsule camera endoscopy (pill cam). That's how mine was finally diagnosed - pill cam.

I agree, for the same reason. I was finally diagnosed after a pill cam.
My problems so far have been limited to the small bowel.

Chronic anemia. I get iron infusions every year and a half to two years when my iron stores get low.

 

[dynamo83]

I agree, for the same reason. I was finally diagnosed after a pill cam.
My problems so far have been limited to the small bowel.

Chronic anemia. I get iron infusions every year and a half to two years when my iron stores get low.

Good to know! Do they start with the colonoscopy just because it's cheaper?

I don't have anemia, but I do have chronic Vit D deficiency and I've had low Alkaline phosphatase, too. All my other bloodwork has been normal.

 

[paddywack]

Good to know! Do they start with the colonoscopy just because it's cheaper?

I don't have anemia, but I do have chronic Vit D deficiency and I've had low Alkaline phosphatase, too. All my other bloodwork has been normal.

Good question. I don't know if it's cheaper, but it does carry a risk of needing surgical retrieval if it can't get all the way through, because of stricture, etc.

They may start with a colonoscopy because it's easier to access.
Why put you through a pill cam or MRI if they find the answer the easier way?

I had extremely low vitamin D years ago and I've been on a high daily dose ever since.
But I live in Minnesota. We should all probably take extra vitamin D.

 

[xmdmom]

I am very sorry that you have been dealing with all of these troubling symptoms and glad you have a gi md who is listening to you now.

Has recurrent endometriosis been ruled out? I understand your surgeon thought it was highly unlikely in 2015 so it probably isn’t that. However bowel endometriosis can occur after hysterectomy and can have similar symptoms as IBD. From what I’ve read, colonoscopy would generally not see endometriosis so if your colonoscopy is normal, you might ask about imaging that could look for crohns and also bowel endometriosis if it hasn’t been ruled out. I think it might be something other than CT.

Wishing you all the best!

 

[dynamo83]

I am very sorry that you have been dealing with all of these troubling symptoms and glad you have a gi md who is listening to you now.

Has recurrent endometriosis been ruled out? I understand your surgeon thought it was highly unlikely in 2015 so it probably isn’t that. However bowel endometriosis can occur after hysterectomy and can have similar symptoms as IBD. From what I’ve read, colonoscopy would generally not see endometriosis so if your colonoscopy is normal, you might ask about imaging that could look for crohns and also bowel endometriosis if it hasn’t been ruled out. I think it might be something other than CT.

Wishing you all the best!

Hi xmdmom. Thank you for your response. Yes, I certainly am thinking about endo, especially after my very protracted and awful struggle with it in my 20s. I've been keeping a symptom diary, and the pain and other symptoms do not seem to follow a monthly cycle like my endo did, plus the fissures... But of course, endo is a sneaky disease that loves to mimic other things. If the GI search comes up empty, I will likely return to my endo specialist to see if that is the culprit. General surgeons, GIs, and most GYNs will miss a lot of endo even when looking for it.

I was wondering about CT... the GI said that would be his next step, but it sounds like MRI is better, and pill cam better than that? The CT back in 2017 saw the TI and cecum thickening, but what I'm guessing is that CT wouldn't be enough to make a diagnosis? The only definitive way to dx endo is laparascopy (preferably with a specialist prepared to do excision at the same time), which is why I'll wait until other possibilities that don't require surgery have been ruled out. Ugh.

The other fun part is that there is an associative link between endo and IBD... you're almost twice as likely to develop IBD if you've had surgically confirmed endo, not to mention a long list of other autoimmune disorders. :/

 

[dynamo83]

Well, it's prep time! Oh, joy. Fortunately, not my first rodeo (third time I've done bowel prep in my life, thanks to endo) so I know the drill, but always so fun. I've previously had to do the drinking of that nasty gallon of prep stuff in the States, but now I'm doing split dose Pico-Salax here in Canada. Something new! And I get to be up all night! Ugh.

I am finding, however, that just being on the clear liquid diet is reducing my normal gut symptoms... Other than the 4 BMs I've already had today (and I haven't even started the laxatives yet), all the other unpleasantness (pain, gas, pressure, etc) is greatly reduced. I do get very weak from not eating, though... have had that problem fir a long time -- if I go too long without food (like 6 hours or more when awake), I get cold sweats, shaky, pale, will even pass out if I exert myself. I don't know if this is because my system moves food through so quick, or what, but it's annoying. So I'm watching movies on the couch all day.

Anyway, wish me luck tomorrow. Not nervous about the actual scope, but of course a little nervous about what's in there. But always better to know! I'm certainly crossing my fingers there is nothing, but then the mystery digestive saga continues.

 

[Scipio]

I do get very weak from not eating, though... have had that problem fir a long time -- if I go too long without food (like 6 hours or more when awake), I get cold sweats, shaky, pale, will even pass out if I exert myself.

Sounds like low blood sugar. I've always had similar symptoms when fasting even long before I came down with Crohn's. Some people can skip breakfast and just keep on going. If I skip breakfast I'm about ready pass out by about 11:00 AM - and it causes bad headaches too

Good luck tonight and tomorrow!

 

[xmdmom]

Good luck!

 

[dynamo83]

Sounds like low blood sugar. I've always had similar symptoms when fasting even long before I came down with Crohn's. Some people can skip breakfast and just keep on going. If I skip breakfast I'm about ready pass out by about 11:00 AM - and it causes bad headaches too

Good luck tonight and tomorrow!

Yes, same. Have never been able to fast, carry snacks with me everywhere, and must eat breakfast before 10. I barely eat any sugar because it seems to make it worse, so all this juice is a bit strange for my system. But that's the deal for a day! Thanks, Scipio. A minor inconvenience compared to many.

 

[dynamo83]

PS... Pico-Salax is WAY easier than the dreaded gallon of nasty. Things have improved in the decade since my last colonoscopy!

 

[dynamo83]

Well, all done. The sedation here is not nearly as pronounced as in the States, so I watched my colon movie in real time. Ha. Doc said mostly looks good, took biopsy from terminal ileum and a random section of colon. Also found a polyp in transverse colon. :/ Have to wait 3-4 weeks for follow-up to discuss pathology.

 

[dynamo83]

Update: Talked with GI doc today. Biopsies came back clear except for one, which showed minor non-specific colitis. Polyp was tubular adenoma.

Plan: treat "as if" for bile acid malabsorption to see if it helps, while waiting for MRI to look at small intestine.

 

[Jacamanda]

Hi all, apologies for the long intro post but I want to make sure I am properly advocating for myself and asking the right questions. I hope this is the right forum section for this post.

I'm a 38 y.o. female in Canada, normal BMI, family history of ulcerative colitis, and personal history of endometriosis with hysterectomy in 2008. It took 7 years of suffering before I finally got a diagnosis and surgical help for widespread Stage 3 endo (including on my bowel), so I want to be sure I avoid a similar scenario with my digestive issues.

I finally got a telehealth appointment with a GI specialist last month after years of escalating GI problems. I'm not even sure if I accurately described my history to him over the phone... I was rambling a bit. But whatever I did tell him, he is suspecting Crohn's and I have a colonoscopy scheduled 2 weeks from now. He tested me for celiac already, which was negative. Upper GI ultrasound and barium swallow showed nothing except mild reflux (these were ordered by my GP because I developed LPR last year). A quick rundown of my symptoms and history:

2015-2016 -- started getting abdominal pain, mostly lower right, thought it might be endo coming back. Called surgeon, he said highly unlikely. Ignored as maybe ovarian cysts or something. Some bouts of loose stool, nothing dramatic.

2016 - developed anal fissures and skin tags. Went to proctologist for dx. Was given ointment from compounding pharmacy. Pain got better. Was offered surgery, decided no. Took stool softeners to keep stool soft until blood stopped.

2017 - Appendicitis. Ignored for a week, thinking ulcers, pain near belly button. Tried omeprazole, no improvement. Pain got worse, moved to lower right. Went to hospital, had appendectomy. CT scan also showed thickening of terminal ileum and cecum, recommended follow up. Never followed up because I moved and then forgot.

2016-2019: started getting pain after eating (30 mins to 1 hour after starting to eat) right side middle to lower abdomen. Could not identify triggers. Lay down on couch until it went away. Also started getting occasional severe but fleeting (10 to 20 seconds) episodes of stabbing rectal pain.

2020: developed chronic cough in late March, several bouts of night sweats and low grade fever (100F). Pain after eating sometimes still, though waxes and wanes. Rash on shins... small red bumps, slightly tender but not itchy. Thought it was Covid, tested negative. Increasingly loose stools.

2021: a couple instances of crippling abdominal pain not associated with eating (like I could not stand up straight, lasted an hour or so). Also dxed w/ LPR as cause of cough by ENT. Barium swallow and upper GI ultrasound normal except for mild reflux.

Symptoms in general:
5+ years of loose stool, periods of increasing frequency and urgency. Type 6 most of the time. Now sometimes 4-5 BMs per day, but usually 2-3. Sometimes very urgent. Never constipation, rarely a solid poo at all.

Abdominal pain and tenderness, mostly around navel and below/right. Sometimes severe, sometimes nausea.

Vit D deficiency for years, despite supplements and outdoor recreation... not seasonal.

Gas/bloating/gurgling often

Anal fissures and skin tags.

LPR

Occasional severe stabbing rectal pain

Feeling like I have to poop sometimes, but no poop

Occasionally unexplained skin rashes on abdomen or lower shins. Not itchy, small red bumps. No blisters.

Okay, that's all. So my question is: if my scope comes back clean, what sort of things should I be asking my GI on follow-up? What might be relevant and/or what should I ask for? I'm sure some of these things I did not mention to him, since I'm always afraid of being dismissed as a hypochondriac (trauma from my years of being dismissed for crippling endo, I'm sure). He did mention on the phone if the scope comes back clean that he'd probably order a CT scan... anything else I should request in terms of testing? I live in a rural area, so I'm fairly sure he is not an IBD specialist...

Thanks in advance. I'm really tired of having constant GI problems and would like to get to the bottom of it, whatever it is. Endo forums were a godsend when I was waging that battle, so I thank you all for your time and support.

 

[dynamo83]

The saga continues. Sigh. The bile acid malabsorption treatment did nothing, so I discontinued that. I had one bout of extreme LRQ pain in November that woke me in the middle of the night and kept me awake for 3 hours... if I hadn't already had my appendix removed, I would have thought it was that. Did not go to hospital because there was a Covid outbreak there, and the pain did subside eventually.

As of Jan 1, I altered my diet significantly, eliminating all grains, refined sugars, and legumes. All veggies are cooked, too. This has helped quite a bit with symptoms -- down to 1-2 BMs per day now, much less urgency, and some even formed. Amazing. Have not experienced abdominal pain since the switch. That's the good news. I had a MRI last week, also, and just got the results. Mostly normal, but wall thickening and hyperenhancement of the terminal ileum with restricted diffusion. Non-specific, of course. My CT in 2017 also showed wall thickening here, so could be idiopathic or chronic? I also had a CRP test a couple months ago, unrelated... I had strange left knee pain and swelling that the clinician thought would be RA or a Baker's cyst. It was neither -- CRP came back normal range (<5), as did RF, and ultrasound showed no cyst. So probably just regular osteoarthritis or some tendonitis or something. Who knows. Anyway, still no answers on the GI front, as everything comes back "non-specific"... Waiting for a call from the GI, but not optimistic he will have any insight. I am going to try to continue to manage with diet for now...

 

[my little penguin]

@dynamo83
Spondyloarthritis is RF negative
It can cause pain in the joints that move from joint to joint
Especially the tendons and ERA
Sometimes it causes sub clinical Gi inflammation (not enough to be called crohns ) but inflammation none the less
My kiddo has juvenile ERA (spondyloarthritis)
Abd his crp is not raised
https://spondylitis.org/about-spondylitis/types-of-spondylitis/

You need to see a rheumatologist who specializes in ERA

 

[dynamo83]

@dynamo83
Spondyloarthritis is RF negative
It can cause pain in the joints that move from joint to joint
Especially the tendons and ERA
Sometimes it causes sub clinical Gi inflammation (not enough to be called crohns ) but inflammation none the less
My kiddo has juvenile ERA (spondyloarthritis)
Abd his crp is not raised
https://spondylitis.org/about-spondylitis/types-of-spondylitis/

You need to see a rheumatologist who specializes in ERA

Thanks for your response, My Little Penguin. It did not occur to me that it could be related, and the clinician who ordered the CRP and RF and US for my knee was at a walk-in clinic (the pain was quite marked, and my husband was nervous about a blood clot), so no follow-up. I guess I could ask my GP. He probably thinks I'm a hypochondriac by now, but I'll attempt to get another referral.

Perhaps it is not coincidence that my GI symptoms really started in earnest around the same time I started having more joint problems? I had steroid injections into my SI joints in 2015 after X-rays showed problems, then two hip surgeries, and then in 2017 that CT which showed the TI thickening at the time of my appendectomy. I also had biceps tendonitis for quite a while. I have had back pain for many years which is worst at rest and feels better when I'm moving. But I did have a spine MRI in 2013 that only showed osteoarthritis.

I'll wait to see what the GI doc says, and then try to talk with my GP.

Thanks for the tip!

 

[dynamo83]

It continues...

GP ordered ANA, which came back positive, as did anti-dsDNA. This is highly suggestive of lupus, but not definitive. Waiting on results of fecal calprotectin and a knee x-ray. Was told the wait for a rheumatologist here is 2.5 years unless the x-ray comes back with serious damage. Ugh. Have follow-up with GI in a couple weeks... GP said it's possible that it's inflammatory arthritis related to Crohn's. So anyway, still no idea. Sigh.

 

[dynamo83]

Next installment:

Knee x-ray came back clear, no damage or osteoarthritis. But the bad news is that now I am having joint pain in additional joints: other knee, elbows, wrists. It comes and goes. And the fatigue is starting to escalate and interfere with my life significantly. Booo. My BMs have gone back to type 5/6, some with urgency, but still only 2-3/day. I have started to reintroduce "normal" foods into my diet, so maybe this has something to do with it.

Rheum referral did not take 2.5 years, thankfully. Rheum says he thinks the anti-dsDNA was a false positive, and is retesting. ANA can be positive for all sorts of reasons, including nothing. He thinks joint pain is arthralgia related to Crohn's, and my other symptoms like fatigue and low-grade fever also could be IBD-related. He does not think I have lupus (phew!)

Hilariously (and/or infuriatingly), the hospital lab LOST my FC sample the first time 2 months ago, so I redid it a month ago, and then the courier LOST it again in transit to the reference lab! No joke. Like, how do you even lose a cup of poop? Is it rolling around in the back of a van somewhere? So now I have to go do it AGAIN, and it takes 4 weeks to get results back. My GI doc said that if it comes back high, he is likely to dx mild Crohn's based on CT+MRI+FC+symptoms.

Sigh. More soon!