Not Diagnosed Yet

[MorningBell]

Hello Everyone! Thank you for being so welcoming! Sorry if this gets long!

I have been dealing with digestive issues on and off for what seems like my entire life. My mom even talks about how when I was a kid I would complain about my stomach hurting a lot and she rarely believed me, thinking I was trying to get out of eating something I didn't like.

Most of my pain and issues that I can really remember started when I was between 16-20. It's hard to pinpoint exactly when it all started because it didn't come on suddenly. I've always been someone to have bowel movements a few times a day, but at some point they started becoming more loose and my stomach pain got more painful.

When I was about 20, I had enough of the pain. Immediately after I would eat, and sometimes before I would even finish, I would start getting horrible stomach cramping and sharp pains like gas/diarrhea, but more extreme and frequent. Then I would need to get to the restroom IMMEDIATELY and would have diarrhea or very loose, sticky stools. I went a GI who did a colonoscopy and and upper GI follow-through, as I was experiencing a lot of acid reflux as well. They told me nothing came up on the colonoscopy and that I digested more quickly than most people and sent me on my way.

So I lived with it for awhile, and then I guess at some point it got better (maybe went into remission?). Off and on I would have issues here and there, but I just assumed it was something everyone dealt with, that it was "normal." To be honest, I also smoke marijuana recreationally a lot during that time, but stopped when I got pregnant and had my son 8 years ago.

For about the last 6 years, I've been dealing with long bouts of diarrhea, cramping, abdominal pain, and loose, sticky bm's. Then 7 months ago (I'm now 32) I developed what I later found out to be a fistula. I thought it was hemorrhoids and waited entirely too long to go to the doctor to have something done about it and had a surgery to put in a seton (which finally fell out the other day!) 4 weeks ago. After my surgery, the surgeon said that she believes I very well could have Crohn's. I had spoken with her before about my family history: my grandfather had Crohn's, my grandmother has diverticulitis, and so do 2 of her sisters and her other sister (my great-aunt) also has Crohn's.

So tomorrow I go back to my surgeon to check on the fistula, and she set me up with an appointment with a GI on Thursday. I'm nervous about the possibility of having Crohn's, but also feel like maybe that's not it.

Do you all have any suggestions of what I should be prepared with when I see the GI on Thursday? What questions should I ask? Should I tell him all of what I just told you all? I feel like I'd be talking to him forever!

Thank you so much in advance for any advice you may have!

 

[Scipio]

Definitely tell your GI, or the medical assistant who takes down your info, all your digestive history. It's an important part of the pattern.

Also, have you recently had anything other than symptoms and a fistula to indicate Crohn's? Repeat colonoscopy, lab tests, MRI, capsule camera endoscopy, or anything like that? I think your symptoms combined with having a fistula are strongly suggestive of IBD. Some or all of those tests and procedures may be needed to fully diagnose and characterize your condition.

And if it does turn out to be Crohn's then you have an answer and a path forward. There are many new and more effective therapies available now compared to 10 or 20 years ago and more on the way.

Good luck.

 

[MorningBell]

Definitely tell your GI, or the medical assistant who takes down your info, all your digestive history. It's an important part of the pattern.

Also, have you recently had anything other than symptoms and a fistula to indicate Crohn's? Repeat colonoscopy, lab tests, MRI, capsule camera endoscopy, or anything like that? I think your symptoms combined with having a fistula are strongly suggestive of IBD. Some or all of those tests and procedures may be needed to fully diagnose and characterize your condition.

And if it does turn out to be Crohn's then you have an answer and a path forward. There are many new and more effective therapies available now compared to 10 or 20 years ago and more on the way.

Good luck.

Thank you so much for your response!

Other than the family history, symptoms and fistula, nothing else would indicate Crohn's. My last colonoscopy was when I was about 20 and they didn't run any other tests back then except to test me for celiac disease, which was negative. I have found that eliminating gluten and soy from my diet helps quite a bit, and has also almost eliminated my cystic acne and the mouth sores that I would get so frequently (which I'm wondering if those could also somehow be related to whatever is going on in my digestive tract).

My symptoms are:

• Loose, sticky stools 3-4 times per day
• Diarrhea several times per week
• Severe cramping and sharp pains in my lower abdomen after I eat (sometimes all day)
• Feeling like I'm unable to get all of a bowel movement "out", so I sit on the toilet A LOT
• Obviously sore anal area due to all of the bowel movements
• Drainage maybe? I have been having issues with keeping my underwear clean (before the fistula) for about a year or so
• And the fistula, of course

 

[Scipio]

Other than the family history, symptoms and fistula, nothing else would indicate Crohn's. My last colonoscopy was when I was about 20 and they didn't run any other tests back then except to test me for celiac disease, which was negative.

In that case I think your GI will likely order some of those tests I mentioned. If not you should ask for them, starting with a colonoscopy. A colonoscopy 12 years ago tells you nothing about what your colon looks like now. Some initial lab tests would be a good idea too: CRP, sed rate, and fecal calprotectin.

I'm pretty sure your GI will order these on his/her own, but be prepared to bring them up if not.

 

[MorningBell]

Thank you so much! That is very helpful for me! Back when I was 20, I didn't know what to ask for or do, and so nothing was done, so I want to make sure I'm prepared to find a solution this time. You have been very helpful!