Unsure if Crohn's

[kokonutz]

Hi guys,

I've had these symptoms for the last 2 months:

Occasional diarrhea (10 instances in the last 2 months)
Mainly LRQ pain with some LLQ pain(doesn't seem tender to touch)
white stringy substance in stool twice
Lower back pain
On and off sharp stabbing pains in rectum that last 1 second


Saw about 3-4 different doctors, had a blood test and occult fecal blood test, all negative. None seemed under the impression it was anything serious, last doctor referred me to a GI. I have an apt tomorrow.

CT with IV contrast showed diverculosis with no inflammation(but a kidney stone)
Rectal exam fine
CBC and other bloodwork fine

I did get tested for H-pylori and tested positive, finished my 2 weeks of triple-therapy 2 weeks ago.

The pain is still there, and I am really scared I have an IBD. I have been reading these forums vehemently and feel like I might have Crohn's. What else would cause this kind of abdominal pain for this long? The doctors don't seem to believe the kidney stone or H-pylori is related to my abdominal pain.

I have no fever, a lot of solid stools, and sometimes the pain seems to spread to my groin area and lower back.

I used to get IBS like cramps on the left in high school, but those would always go away after a bowel movement. These don't seem to. Could it be IBS symptoms that changed?

 

[kokonutz]

Just saw my GI specialist today.

I mentioned that I had IBS throughout my youth, and that it was very easy to differentiate this pain and IBS pain.

She said that abdominal pain and back pain was pretty unspecific. She said that a colonoscopy at this point would be low-yield, although she is willing to do both EGD and colonoscopy for me as soon as I want it. If my symptoms go away before then, I can cancel it. She wants me to relax, as I voiced the anxiety that this is giving me. She did say however that the upper abdominal pain from my h-pylori related gastritis should have gone away, and that my doctor should have given me 6-8 weeks of Omeprazole instead of 2. Here is the manner in which she addressed my concerns:

Occasional diarrhea (10 instances in the last 2 months)

Depends on your diet. Consistent diarrhea is more of a red flag. Although this does not mean I should ignore it, it does not necessarily mean I have Crohn's.

Mainly LRQ pain with some LLQ pain(doesn't seem tender to touch)

Didn't seem to have that good of an explanation for this, but said abdominal pain can be mysterious and to keep an eye on it. Didn't seem to think it was IBS.


white stringy substance in stool twice

She is believes that this may be related to previous issues with IBS.


Lower back pain

Lower back pain does not mean I have Crohn's. It is non specific and she may recommend me to a spinal doctor.

On and off sharp stabbing pains in rectum that last 1 second

This is relatively normal for people. It is a muscle spasm.


She also said that while possible, it is very rare that a Chinese man (I am chinese) is diagnosed with Crohn's. She also said this inhibits the usefulness of a genetic marker test.

I mentioned that I used to take a lot of AdvilPM from Jan-July (finished my bottle of 200 capsules). She said I may have had damage to the small intestines from this as well that would take some time to heal.

I know that a lot of you have had a lot of pain and suffering all these years, but I have another question:

Upon browsing these forums, it seems like almost everyone who has any suspicion of Crohn's is here for a long time either getting a diagnosis or ends up having Crohn's. With Crohn's being as rare as it is, why do I feel like anyone with a suspicion of Crohn's ends up getting it?

 

[DJW]

Hi and welcome.

Sorry, just saw your post. With regards to your question. Why does anyone suspected of crohns end up being DX with crohns? I think that has everything to do with the nature of the internet and this site. People are suspected of crohns and aren't diagnosed with it aren't coming back. Its the same reason you find all the worse case scenarios here. Others not experiencing complications are out enjoying life.

Its really a double edged sword. You can get great info but if you're newly diagnosed all the stories could leave you feeling hopeless. I want (along with other ibd vets) want newley DXpeople their IS hope for the future .

 

[kokonutz]

Hi and welcome.

Sorry, just saw your post. With regards to your question. Why does anyone suspected of crohns end up being DX with crohns? I think that has everything to do with the nature of the internet and this site. People are suspected of crohns and aren't diagnosed with it aren't coming back. Its the same reason you find all the worse case scenarios here. Others not experiencing complications are out enjoying life.

Its really a double edged sword. You can get great info but if you're newly diagnosed all the stories could leave you feeling hopeless.

Hi DJW,

That's what I suspected initially. Reading this site makes me think my RLQ pain and lower back pain is certainly Crohn's. I looked over almost the entirety of the undiagnosed forum, and found very little people that said their symptoms eventually went away. Those with 2-3 posts, I checked their post histories.

Some said they had IBD and never came back.
Some said they were pending results and never came back.

But when I think about it, 2 months of RLQ pain and lower back pain shouldn't immediately point to Crohn's, given how rare it is compared to other diseases that could present these symptoms.

The thing I was scared about from joining this site the most was people making me worry further, I see many posts in the undiagnosed forum with people asking questions if their symptoms match Crohn's, and everyone always said yes.

Thanks for taking a step back and giving me a more neutral possibility.

 

[DJW]

I was DX with severe crohns at a young age. I stayed away from support groups for that reason.

Sending you my support.

 

[Catherine]

Welcome to the forum.

I am still here. I had scopes and have accepted my dx of IBS. Yes I still have symptoms which could be some more.

After my scopes I removed most wheat/gluten and lactose from diet and I am feeling so much better. Do NOT do this if you are going ahead with the scopes.

There is a test called faecal calprotectin which help me accept a dx of IBS.

I would have also left the forum but I have a 19 year daughter with Crohn's, so I stayed.

 

[kokonutz]

Welcome to the forum.

I am still here. I had scopes and have accepted my dx of IBS. Yes I still have symptoms which could be some more.

After my scopes I removed most wheat/gluten and lactose from diet and I am feeling so much better. Do NOT do this if you are going ahead with the scopes.

There is a test called faecal calprotectin which help me accept a dx of IBS.

I would have also left the forum but I have a 19 year daughter with Crohn's, so I stayed.

What were your symptoms?

 

[tzvia]

Kokonutz, did you schedule the colonoscopy? That's really one of the best ways to diagnose crohns or rule it out. Also, have you had your blood tested for inflammatory markers?

 

[Catherine]

I have a long history of IBS 25+.

I have diarrhea on and off. Severe reflux and a almost constant lower left side stomach pain. All my blood tests normal except for B12 but this was easy corrected with supplements.

Upper scope showed chronic gastritis with cell changes.

On a very low gluten and low lactose diet my reflux is almost completely gone which me was the worse symptom.

 

[kokonutz]

I was very gassy last night, and woke up in the middle of the night. My rectum also ached a little as well as my abdomen. I'm not sure if I woke up due to the pain or woke up and felt a little pain, but I started having CD related nightmares.

I hope it's from the Omeprazole, since I just started it again after being off for 3 weeks.. I think I will schedule my colo and egd.

 

[kokonutz]

Man,

I feel like I most certainly have Crohn's. Every day I spend 5-6 hours looking at Crohn's sites, and IBS, UC, etc sites for the source of my RLQ pain. I don't seem to match any symptoms for any other differential diagnoses...

Scared...

 

[DJW]

Crohns can take a while to diagnose. Can you get a second opinion?

 

[kokonutz]

I am going to wait to see how my colo/egd turn out next Tuesday. Can SIBO cause RLQ pain?

 

[DJW]

I think so. But I'm not 100% sure.

 

[kokonutz]

I think so. But I'm not 100% sure.

Darn it, I've been so tired. I don't think I've ever been this tired and I got a full 8 hours of sleep. My symptoms just keep pointing more and more towards it.

 

[UnXmas]

There is a vast number of things that could cause your symptoms. Your doctor is right that your symptoms are not specific. If you search the Internet for digestive system symptoms, Crohn's will keep coming up because it is one of the most common conditions that causes digestive symptoms. There are many many other digestive conditions, but most are not common enough to have online forums with hundreds of members. It's also possible that the more you read about a particular condition, the more convinced you will become that you have it.

Let doctors do some of the work rather than self-diagnosing. Make sure your doctor fully understands your concerns. If you don't feel you're being taken seriously enough, try and find another doctor. But tests are the only way you'll get a diagnosis. If you can get tests scheduled, you'll be far closer to working out what's wrong with you than reading online will ever get you. Even negative test results can rule things out. However, some tests are invasive and do come with some risks, so sometimes doctors may advise that they're unnecessary. This is where you have to make sure your doctor knows the extent of your symptoms, their impact on you, etc., so you can be confident they're giving you appropriate advice.

It can take a long time to get a diagnosis. Make sure you don't focus on it so much that it causes you unnecessary stress.

I feel like I most certainly have Crohn's. Every day I spend 5-6 hours looking at Crohn's sites, and IBS, UC, etc sites for the source of my RLQ pain. I don't seem to match any symptoms for any other differential diagnoses...

Real life illness is often a lot more complicated than a list of symptoms given on a website. I've had side effects from medications that were not listed among the side effects those medications were known to cause. I have other medical conditions besides Crohn's, and they have caused me to have symptoms that those conditions were not known to cause. I have many times had test results which contradicted what my symptoms suggested the results should be.

You can't determine the cause of your pain by reading online sites. Crohn's, UC and IBS are common causes of digestive symptoms. There are far more uncommon ones you most likely won't have come across searching these sites. Digestive symptoms can also be caused by conditions not categorised as gastroenterological; they can be caused by conditions classified as, for example, neurological, or rheumatological. If you were to search sites of diseases under these classifications, you'll find even more potential causes - too many for you to research.

Reading this site makes me think my RLQ pain and lower back pain is certainly Crohn's. I looked over almost the entirety of the undiagnosed forum, and found very little people that said their symptoms eventually went away. Those with 2-3 posts, I checked their post histories.

Spending five or six hours a day reading Crohn's websites, and reading the whole of the undiagnosed forum and checking posters' histories, is worryingly obsessive. Please take a break from medical sites, and from thinking about your illness altogether! Maybe you do have Crohn's - you will still only be able to know if this is true by having it identified by tests, not by reading about it. This is just a suggestion, if you want to try it: before your next medical appointment, set a period of time - say an hour - in which to plan out what you want to say to the doctor. Try limiting the time you spend thinking about your illness to this hour and to the appointment itself. There may also be times when your symptoms demand your attention whether you like it or not, but even then, try to think of other things and to push thoughts about your symptoms to the back of your mind. Dedicate the rest of your time and energy to something more enjoyable!

 

[Axelfl3333]

You need to stop the dr google thing it's never good news and let your doctors do there job if you keep endlessly googling symptoms it may end up influencing what you tell them and lead them astray.good luck

 

[kokonutz]

You are all right. I had my colonoscopy + EGD on Tuesday. Everything appeared normal but pending biopsy. I am going to try to stay off crohns forum until further developments and stop googling things. The discomfort and pain is still there, so I guess it won't help to keep researching things.

 

[UnXmas]

Enjoy your time away from the forum, kokonutz! Do come back if you need support...just keep a limit on the time you spend here. (And don't worry about the negative scopes - it's quite common for people to feel disappointed if they're expecting answers and don't get them. If that is how you're feeling now, don't stress about it. Sooner or later you'll get diagnosed, or you'll get better.)

 

[kokonutz]

Thanks UnXmas.

So my biopsy results came back. All clear for everything. I don't even have gastritis.

She was able to get to the terminal ileum and biopsy that as well. She does not have an explanation for my pain and all she found was some diverticula without evidence of diverticulitis. Perhaps this is causing my pain?

She advises that I address a 4.5mm kidney stone, as they may somehow be causing my pain.

 

[Axelfl3333]

That's great news this is a club no one wants to join!

a GP friend of mine who is now retired used to be totally upfront with patients who had undiagnosed pain after all sorts of tests to eliminate anything bad.he would tell them " to be cautious and aware of any changes and give it time,they rarely needed further treatment.".....

all the best