Bob I'm sorry to hear what you're going through.  Hopefully you can find better medical care soon.  You might find some helpful information here Natural Healing for Crohn’s and Ulcerative Colitis (crohnscolitislifestyle.com).  I've worked with Dane and he is excellent at knowing what tests help monitor inflammation.  Calprotectin for sure. (Mine used to be off the charts, now it's almost zero.)  Also your sed rate or CRP in blood tests can be important markers.  Sending you all my best. 

@lynne Thank you for the wellwishes. Is that site you linked free of charge? If I contacted them, would they be able to tell me what signs to observe for bowel inflammation, or better answer my queries without a fee?

Bob, welcome and thank you for sharing that into. 

Your symptoms mirror much of what I went through, but I didn't experience nearly as much frustration with getting help as you have been, especially not through a pandemic. 

A few thoughts:

If you're still looking for referrals for a doctor who can assess what's going on (and you can go through as many doctors as you want, until you find one who understands you), be sure that it's a GI who specializes in IBD - not all GI doctors do.

Your symptoms do sound like Crohn's (especially the mouth ulcers) but you'll likely need a biopsy in addition to any other tests you're doing, as they don't usually rely on a single marker to make a diagnosis. 

If your bowels are inflamed, it's true that you may or may not show symptoms. Many people will experience loose or more frequent bowel movements, but I don't think there's a "right time" to take a sample for your Calprotectin test. 

Since you're also in Canada, connect with Crohn's and Colitis Canada to find additional resources or medical professionals in your area who can help: https://crohnsandcolitis.ca/

I went through several doctors before I found one who was willing to really try.

I don't personally endorse any alternative therapies, especially after I sunk thousands into them when I was really sick, but I understand how desperate you likely feel right now. Do your best to take care of you, and if you have someone who can make the calls on your behalf, please ask them for help. 

You're more than welcome to start new threads with different questions. Hang in there! 

@veganostomy Thank you SO much for the welcoming and the encouraging words of support, I really appreciate it. And thank you for creating this forum!!

Hi there Bob... welcome to VO ! I'm  so sorry for what brings you here but know your in a good caring place.  It may take a day or two to get replies sometimes but eventually you will get them. So sorry your experiencing such a lack of time & desired results on doctors parts & the run around!! Thats tough enough for what your dealing with.

A few things that may help. Keep a journal or spread sheet, of symptoms & even foods & even activity at the time of attacks.  Take your weight daily & in the mornings if possible.  Maybe a journal can help nail down foods that could cause a situation with your guts. I went thru way too many years of waiting for apts. & wishy washy doctors who couldn't think outside the box . Several telling me it was Irritable BS or all in my head when  I knew deep down in my guts that things were not right, so do not doubt your inner voice.  

Are you near a University or Teaching Hospital?  Are you able to show up in their Emergency Room at the time of an attack?  Please do not drive yourself in the midst of pain to any hospital. An ambulance most always  gets you seen & a bed before the waiting room crowds. Don't be afraid to use this service & always say how much pain you are in or how ill your feeling & unable to *safely drive* when calling 911. 

It was the teaching hospital specialists & doctors that made the difference for me as they keep up to date on new testing,  procedures & symptoms & new disease regularly.  ((... Uh, once In agony & not wanting the usual runaround  but...ever so unfortunately... while "visiting family" near a big Teaching Center I was in a terrible attack & in so much pain we decided to go there instead of the usual low staffed hospital as making the trip home was way too painful for me to make.)) This is when I was finally taken seriously & proper tests done & in turn results that proved issues were not in my pretty little head.  Know that results as you experienced can be hit & miss. I still have times when & please don't apologize, but when I read what someone like you are going thru that it brings back those feelings of supreme inadequacy, rude comments & judgements by inadequate physicians.  I feel led to share a few things that got me thru those desperate years... such as that little trip above to "visit family".

Unfortunately  it is going to take time either way to get  diagnosed. Keeping journals of things such as foods,  duration & activities at time of attacks pain levels from 1 to 10 or worse, what was your stool like,  length of time in attack , how you felt before & after & how long... will help in a diagnoses. Document your apts.  I learned of this from Eric & the others here after my diagnoses & surgeries but it will help you & has helped me since. Keep your journals preferably on something the doctor can read.  If they ask, Never leave your original journals with them, but offer "them" to make photocopies & always glance that you have back everything you lent *while you waited & never say take your time as they will. I've missed an apt. afterwards because I said take your time to a receptionist who went to lunch before photocopying 5 pages! Ugh!   If you have no one to go with you to these apts.  then do a voice recording on your phone so you can make notes later & not forget what your told. Always ask Permission 1st. I was never turned down especially when I said I didn't want to forget anything.  It's is a stressful time, plus often **family who can't be there will want to know later what was talked about & ask questions you may forget answers to.  I always asked the Drs. permission to record (while recording with my phone recording & in a pocket)... then turned it on when he said yes.   No mix up or  forgotten answers later if talking to a concerned party. Oh how I wish I had recorded that one doctor that was particularly rude to me. 

Know who you are seeing in terms of their ability & how it can help you. Ask the referring doctor why this person? Is it someone they would send family to?  How ling have they been in practice. The newer Docs often have more up to date knowledge are more  eage.  There is a difference between a  Gastroenterologist &  a Gastroenterologist Surgeon. Two years were wasted there. Don't be afraid to request to be seen by a specialist at a University or Teaching Hospital. You have that right & the worst they can say is no, if they do say no ask why & if its not a good enough reason for you ... move on. You are allowed as Eric said to see & request to be seen as you need to be. Be upfront with questions to referring GPs. 

Do you have family history of any bowel disease or disorders?   Intestinal or Stomach cancers?? Allergies. Start asking questions of family if you haven't already. I live in B.C., hello neighbour! I have many family in Alberta, Saskatchewan  & Manitoba that I don't know as an adult. In later years I found out I have family with Crohns & several with undiagnosed bowel issues.  Crohns in the family will also get the Doctors attention. So start chatting with those who are close to you & make a few unexpected *phone calls* to those you are not.    Be willing to share your experience with them.  Its amazing how many people will open up that have  suffered in silence because its embarrassing or they have been put off by Doctors or someone who used the hypochondriac word on them.  

I certainly understand your frustration & you are so  right to reach out. There are a few things doctors do understand well.  Your **Quality of Life** and missed work  are a few. Don't be afraid to talk about these things with them.  Missed work can mean food & home purchasing issues.  If you live alone it puts you at risķ. Are you Anemic??   Symptoms of Anemia can be... your more tired then usual,  can you discern if it's lack of sleep or from pain or an increase in darker stools? I'm sure by know you know that the darker stools can mean loosing blood in your gut, this can lead to Anemia. If this is a concern for you tell this to your GP & if you find one you like try & nail them down as a permanent GP you or maybe they can recommend someone to save you the riffraff.  If your dizzy, feel like you can't catch your breath at times, are you eating as well as usual? If not, is it because of pain or too dizzy to safely cook a meal? All these things are important. Hair falling out? Skin drier then normal, your nail health, chipping , cracking?  Are your feet & lower legs unusually dry? You may wish to journal these things also. You should be tested for Anemia & if you haven't been, make sure to set up so you can check your lab results on your phone or¿ to know what your lab results are. 

This is long, my apologies. But I hope it helps you in some way or another. Please don't be a stranger here & keep us in the loop. Your experiences may help another newbie down the road..  if not now. Unfortunately covid19 does  mean longer waits but if you need to be seen in emergency please do not hesitate.  The more they can document & look back on may help in diagnoses. Plus you may meet that one doctor who will make the difference for you. Tip, Our hospital is able to send a patient home in a taxi if we went by ambulance & need a ride home.  All the best Bob, stay strong.

Hi Bob, Welcome to the forum, I really hope that you will get answers and treatment. I had a period of not getting the right answers. I echo what Eric has said about alternative treatments. Don’t go there on the promise of a quick fix. You have great advice here and support. Ask plenty and best wishes 💪💪