Do my symptoms sound like Crohn's Disease?

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chronicallysarah
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/10/2017 9:07 AM (GMT -6)   
Hi Everyone!

I have yet to be diagnosed with anything specifically but am in the process of getting one. about 6 months ago I started experiencing my first (what I call) flare. Extreme stomach pain (right upper quadrant and abdominal--already got my gallbladder tested and it isn't that), nausea, diarrhea after eating anything (often beige / yellow in color with fine grounds or lots of mucous, black and tarry, or loose and watery with undigested food in it), upper right back pain, low grade fevers (99.4-100) usually at night, body aches and chills, severe exhaustion, and mouth sores that come and go.

I went to the hospital and they thought it was my gallbladder, when they found out it wasn't they gave me morphine and lots of IV fluid and sent me on my way home with the name of a gastro doctor.

Made my first appointment with the gastro, did a stool sample (they found blood and lots of mucous). I had a colonoscopy that came back normal (with the exception of a few bumps on parts of my intestine). I am going in for an endoscopy on Tuesday.

This past Monday I was in the hospital due to the same severe pain that I had felt the first time around--again, they gave me a CAT scan and found nothing.

I do not have these symptoms all the time--they, for the most part, come and go quite frequently (in 'flares'). I do, however, have constant diarrhea (and sometimes vomiting) after ingesting ANYTHING and severe exhaustion.

My doctor believes that this sounds like Crohn's, but I just want to know if anyone else had similar symptoms and also did not have anything show up on the Colonoscopy.

Thank you!

Post Edited (chronicallysarah) : 9/10/2017 5:59:14 PM (GMT-6)


Bulmanboi123
Regular Member


Date Joined Aug 2017
Total Posts : 48
   Posted 9/10/2017 12:07 PM (GMT -6)   
What did they say the bumps were thag they found on the colonoscopy ?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 9/10/2017 12:44 PM (GMT -6)   
Hi CS, sorry to read about what you have going. I know you mentioned stool testing, did the drs check for parasites & possible infections? When you had your colonoscopy did the dr do biopsy's. The biopsy pretty much determines if you have crohns or not, as it is considered the gold standard for dxing crohns. These bumps you mention really doesn't tell us much. Why is these bumps located?

I do suggest that you obtain a copy of your biopsy report. His office can give you a copy. If you get the report please let us know what it says. Does the dr have you on any medication?

Sorry for so many questions but right now we have a pretty blank canvas to make any comments or suggestions. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Surfer21
Regular Member


Date Joined May 2017
Total Posts : 61
   Posted 9/10/2017 2:29 PM (GMT -6)   
Hi I'm sorry you're going through this, I know how frustrating it can be when you're in so much pain and they can't find anything. I'm 19 and had the same problems since I was 14. 2 colonoscopies and 2 endoscopies between the ages of 15-18 found absolutely nothing wrong with me. It was so frustrating! Until in may this year my flare had gotten the worse it had ever been and it lost 25lbs in a weeks and half. I was admitted to the hospital and my new GI did a colonoscopy and finally found crohns in my ileum. I was relieved it wasn't in my head! Just got my capsule endoscopy results back a few days ago and I have tons of ulceration throughout my small intestine and end of my stomach. I am on proper medication now. So I would say don't give up until you get a clear answer, whether that is good news or bad news, at least you'll be at peace of mind. I hope the best for you and that you'll get some answers.

chronicallysarah
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/10/2017 5:49 PM (GMT -6)   
This is exactly what I am going through!!!!!
What do I do? I am in so much pain and am literally in and out of the hospital constantly. They just give me morphine and anti-nausea meds and send me on my way. I've tried diet changes, etc. nothing.


Surfer21 said...
Hi I'm sorry you're going through this, I know how frustrating it can be when you're in so much pain and they can't find anything. I'm 19 and had the same problems since I was 14. 2 colonoscopies and 2 endoscopies between the ages of 15-18 found absolutely nothing wrong with me. It was so frustrating! Until in may this year my flare had gotten the worse it had ever been and it lost 25lbs in a weeks and half. I was admitted to the hospital and my new GI did a colonoscopy and finally found crohns in my ileum. I was relieved it wasn't in my head! Just got my capsule endoscopy results back a few days ago and I have tons of ulceration throughout my small intestine and end of my stomach. I am on proper medication now. So I would say don't give up until you get a clear answer, whether that is good news or bad news, at least you'll be at peace of mind. I hope the best for you and that you'll get some answers.

chronicallysarah
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/10/2017 5:52 PM (GMT -6)   
Susie,

My first GI was an absolute idiot, first of all. I never received the physical reports of my colonoscopy and therefore have no idea what he meant by the bumps or where exactly they were located. He basically told me that he had found 'bumps' did some biopsies and that was the last I heard. This, and other reasons, is why I switched to my current GI. I have, however, heard that many people with Crohn's don't always show anything on the colonoscopy or endoscopy at first. I just would like to know what direction I should be heading in with my GI. I am in and out of the hospital constantly and it is always morphine and anti-nausea and then I am sent on my way.

straydog said...
Hi CS, sorry to read about what you have going. I know you mentioned stool testing, did the drs check for parasites & possible infections? When you had your colonoscopy did the dr do biopsy's. The biopsy pretty much determines if you have crohns or not, as it is considered the gold standard for dxing crohns. These bumps you mention really doesn't tell us much. Why is these bumps located?

I do suggest that you obtain a copy of your biopsy report. His office can give you a copy. If you get the report please let us know what it says. Does the dr have you on any medication?

Sorry for so many questions but right now we have a pretty blank canvas to make any comments or suggestions. Take care.

Post Edited (chronicallysarah) : 9/10/2017 6:06:39 PM (GMT-6)


chronicallysarah
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/10/2017 6:03 PM (GMT -6)   
Unfortunately my last GI was a total idiot. He did not physically give me any copy of the colonoscopy. He just said that he noticed some "bumps" and did several biopsies. Switched GI's very, very quickly and my new one is wonderful. Getting an endoscopy Tuesday so hopefully some answers will be had! (May get another Colonoscopy or one of those cameras that you swallow if nothing shows on the Endoscopy)




Bulmanboi123 said...
What did they say the bumps were thag they found on the colonoscopy ?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 9/11/2017 12:29 PM (GMT -6)   
CS, all you have to do is call the old gi's office & tell them you need a copy of the biopsy report. They will have a copy available for you without a problem. Your new gi would welcome a copy plus you should always keep a copy for yourself.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 951
   Posted 9/12/2017 10:41 AM (GMT -6)   
Hi Sarah, I have not had EOE but I've come cross info about it online while looking up other issues I have. I haven't seen it specifically connected with crohns but more its own condition related to allergic reactions. Its hard to say about the polyps because there are different types of inflammation, which is why the pathology report will be so important. It's possible. I hope you get some answers soon!

chronicallysarah
New Member


Date Joined Sep 2017
Total Posts : 8
   Posted 9/12/2017 12:18 PM (GMT -6)   
Hello! Thank you so much for the reply. Regarding my other symptoms--do they sound like Crohn's? I am looking for answers as I am so incredibly sick all the time and have no idea what direction to go in.


Labradorite said...
Hi Sarah, I have not had EOE but I've come cross info about it online while looking up other issues I have. I haven't seen it specifically connected with crohns but more its own condition related to allergic reactions. Its hard to say about the polyps because there are different types of inflammation, which is why the pathology report will be so important. It's possible. I hope you get some answers soon!

Sarah

POTS (Dysautonomia) / CFS / Undiagnosed GI Issue

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 9/12/2017 12:56 PM (GMT -6)   
Sarah, I suggest that you go to MayoClinic.com & read about EOE if you haven't looked it up online. I prefer the Mayo Clinic when looking up info because there is too much garbage on the internet.

In all honesty it is difficult for any of us to comment whether you have crohns or not. Once again, you should call the old GI's office & ask for medical records. Just tell the person you would like to come by & pick up a copy of your biopsy report. They will not give you a problem with this request. You can come back here & tell us what the biopsy report says. The report will be helpful to your new dr. By the way, drs rarely just offer up a copy of records, a patient has to request them from the office.

Were you ever checked for infections & parasites when having a stool test done?

Take care.


PS: You may want to delete the 2nd thread you started about the endo, otherwise you will have people posting on both & it may get confusing, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 9/12/2017 1:01:49 PM (GMT-6)


Surfer21
Regular Member


Date Joined May 2017
Total Posts : 61
   Posted 9/12/2017 3:24 PM (GMT -6)   
Hey Sarah,

That was exactly me!! In the er in pain, dehydrated, and basically a skeleton and all they would do is give me morphine, zofran, and fluids and send me off. It was the most frustrating thing ever. I was starting to think it was all in my head and I felt crazy. I knew it was something more though so I didn't give up, and you shouldn't either! Keep pushing your GI ago do test like colonoscopy, endoscopy, and for me the pillcam saw more than has ever been seen in me before so I recommend that. I guess crohns can be tricky in the way that if you're in remmission it won't see anything , so you have to time it right. But I have heard that if a flare goes away on its own than its most likely not crohns. Just keep pushing you GI until he finds something, or even better doesn't find anything and hopefully it's just IBS. I wish you the best and that you get some answers! I know it's a horrible way to live. Surprisingly, I'm still in and out of the er sometimes and even though I am diagnosed and have major ulceration currently, they still tend to send me on my way, so you just have to stay positive.

Surfer21
Regular Member


Date Joined May 2017
Total Posts : 61
   Posted 9/12/2017 3:29 PM (GMT -6)   
Also, I would do a liquid diet for a few days if I were you, it always seems to help my pain level. You should look into the SCD diet
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