No Results after Colonoscopy, What now?

[MorningBell]

Hello everyone! Again, thank you all for being so welcoming and nice!

Yesterday I finally had my colonoscopy. After dealing with diarrhea, severe cramping, and 2-5 bm's per day off and on for most of my life, then a fistula, I thought I was finally going to get an answer. I obviously don't WANT to have Crohn's or IBD and would much rather them tell me something else, but what I was so scared of hearing, after all these years and another negative colonoscopy years ago, was for them to tell me they found nothing.

And that's what they told me. They found nothing.

I broke into tears and my mother just couldn't understand why I would be upset that I didn't have Crohn's. I tried to explain that I wasn't upset about that, just upset that I still have no answers.

Has anyone else gone through this? My doctor also ordered a bunch of blood tests and some breath tests, but I am just so worried that they aren't going to be able to find out what's wrong with me, and I'm going to continue suffering the rest of my life with no answers.

Maybe I'm being dramatic and I know I need to try to stay positive, but I just thought this would be it. Even my doctor's were 99% sure it would be Crohn's given my symptoms and family history.

Thank you so much for your support.

 

[Scipio]

I know what you mean about wanting answers, even if it's bad news, because at least then you can plot a path forward instead of being stuck in limbo.

One thing to consider is that you might still have Crohn's but that it is confined to the small bowel too far upstream to be seen via colonoscopy. So in addition to the lab tests already ordered, I suggest you talk to your GI about getting either an MRI or a capsule camera endoscopy to get a better assessment of the small bowel.

 

[ronroush7]

I am sorry there hasn't been an answer yet. Keep pushing for an answer. You might ask for a MRI. There are other people on here who don't have a diagnosis yet.

 

[MorningBell]

I know what you mean about wanting answers, even if it's bad news, because at least then you can plot a path forward instead of being stuck in limbo.

One thing to consider is that you might still have Crohn's but that it is confined to the small bowel too far upstream to be seen via colonoscopy. So in addition to the lab tests already ordered, I suggest you talk to your GI about getting either an MRI of a capsule camera endoscopy to get a better assessment of the small bowel.

Thank you for that advice! Once these tests come back, I was going to ask my GE what the next steps would be, as I don't have another appointment set up with him until July! It will be nice to be able to go ahead and ask this of him.

Thank you so much for the advice and support everyone!

 

[Bufford]

Don't give up hope, but rather be glad that they did not find anything. So now with the scope out of the way, the next step is to look at other parts of the GI tract further up. As mentioned an MRI might be the next step to see if anything is going on in the small bowel.

 

[MorningBell]

Thank you Bufford! I'm trying to stay as positive as possible about it all!

I also forgot to mention that the doctor mentioned that I have "very twisty" intestines, and that I could be getting some blockages, with liquid coming around and causing my diarrhea. Has anyone ever heard of anything like this before?

 

[Bufford]

Yes twisted bowels can be a symptom of problems, ones that can mimic CD or IBD, but not necessarily the disease.

 

[scottsma]

There is an "Undiagnosed" thread on here that you might want to have a look at.You can chat with others that are having similar problems,which might put your mind at rest.

 

[MorningBell]

Thank you scottsma! I actually had just found it not too long after posting this. I'm so sorry that I posted this in the wrong area.

 

[scottsma]

No need for apologies.I sure didn't mean you were in the wrong place.Non of us want to be here at all,but it's the best forum there is for IBD.I hope you get some results soon and begin to feel better.Let's know how things turn out,won't you ?

 

[my little penguin]

Did they take biopsies during the colonoscopy?
You can have a normal looking scope but have inflammation found on biopsies .
This is DS
Second MRE and pill cam
Good luck

 

[MorningBell]

Did they take biopsies during the colonoscopy?
You can have a normal looking scope but have inflammation found on biopsies .
This is DS
Second MRE and pill cam
Good luck

They did. I don't think I've gotten the results from those back yet. I get all of my results back online and it's sometimes hard to tell what is what, but I'm quite certain those aren't back yet.

This week I'm doing these breath tests to test for lactose-intolerance and 2 other things (fruculose is one I think). After I send those in, I'm going to call and ask what the next steps will be and demand SOMETHING be done before July, which is my next scheduled appointment with him.

 

[ronroush7]

That seems like a long time to wait. Ask if they can fit you in if there are any cancellations.

 

[MorningBell]

That seems like a long time to wait. Ask if they can fit you in if there are any cancellations.

It is SUCH a long time! I am definitely going to ask if that can be moved up somehow.

After my colonoscopy, apparently my doctor told me (my mom remembered, I did not) to let him know IF I have more diarrhea. It's not a question of IF, it's a question of WHEN. I'm not sure why I have to explain that I've been dealing with this since I was a child, and they are still saying IF. I'm just so frustrated with this all still.

So sorry to complain and vent so much.

 

[SN8888]

I've heard it said that most cases of IBS-D could also be described as mastocytic enterocolitis. Did they do a mast cell count on your biosies? Even if they didn't there are some things you can do if you suspect it - avoid mast cell triggers like caffeine, alcohol and a long list of foods especially those notorious for being troublesome (gluten, casein, soy, eggs, etc). Even if you've been told that you don't have celiac, you may still have some issue with gluten. The Persky Farms microscopic colitis forum (google it) has lots of people dealing with this sort of thing.

 

[MorningBell]

I've heard it said that most cases of IBS-D could also be described as mastocytic enterocolitis. Did they do a mast cell count on your biosies? Even if they didn't there are some things you can do if you suspect it - avoid mast cell triggers like caffeine, alcohol and a long list of foods especially those notorious for being troublesome (gluten, casein, soy, eggs, etc). Even if you've been told that you don't have celiac, you may still have some issue with gluten. The Persky Farms microscopic colitis forum (google it) has lots of people dealing with this sort of thing.

The biopsies apparently just came back yesterday. I'm able to view the results online but I'm not sure what most of it means, and the doctor's office called me, but I missed the call, so I'm waiting to call them back today when they open. I'll ask about that if they don't say anything though. Thank you for the suggestion!

 

[Kendra2276]

have you done a capsule endoscopy?

 

[Anna's Bandit]

Morning Bell : I feel the same way. Just had a colonoscopy /endoscopy today and my fear is that they will say they found nothing ! I have had UC for 20 years but my symptoms have changed drastically over the past 3-4 months. They took biopsies. I will probably get a CT Scan too. July is way too long for you to wait for a follow-up with your doctor, I think. Hope you find the answers. Lots of smart people here on the forum to help you ( not me, but I learn from others.) Lynda

 

[Lop Eared Smiles]

MorningBell, I know how you feel, it is frustrating. I've got a swathe of symptoms throughout my whole body, and everything appeared on my colonoscopy last Sunday, but they have taken biopsies. It could well be that they find something on them that they couldn't see with the camera. I hope you've made sense of the results and that you're able to get some treatment.

 

[MorningBell]

Thanks so much for everyone's support! I hate to hear others are in the same or a similar boat as me, but hopefully you will get answers soon.

I got a call from my doctor yesterday that I tested positive for Fructose Malabsorption, where my body is unable or has a lot of trouble absorbing or processing fructose. I knew the test would be positive because within less than an hour of taking the fructose substrate for the test, I had horrible diarrhea. I'm going to assume my SIBO test will be positive as well, as I had the same issue with that test. Thankfully I didn't have that issue with the lactose test. I should hear the results back for those two next week though.

So, my doctor has started me on a low-fructose diet and no coffee or tea for 3 months. Once those 3 months are up, we will test everything again and see if there is any improvement.

I plan on doing the low-FODMAP diet during these 3 months, as it seems a little more strict than the diet my doctor gave me and I'd rather eliminate all possibilities and then start slowly adding some things back in to see what I can handle. I also plan on keeping really good food and symptom journals during this time, just in case this isn't my only issue.

Has anyone else been put on a low-fructose diet before or been told they had fructose malabsorption?

 

[MorningBell]

have you done a capsule endoscopy?

I haven't. I assume after the three months of m diet change, I will start asking for more tests such as that, if I'm not seeing the improvements I'd like to see. I'm just so tired of running to the bathroom and my bottom hurting all the time!

 

[Anna's Bandit]

I haven't. I assume after the three months of m diet change, I will start asking for more tests such as that, if I'm not seeing the improvements I'd like to see. I'm just so tired of running to the bathroom and my bottom hurting all the time!

I understand what you are talking about. Right now I feel like a prisoner in my apartment because I need to be near the toilet. It gets frustrating for all of us because it takes so long to get answers or we don't get any answers at all. Hope you are feeling better today. Lynda:heart: