• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

PLEASE HELP!! give your opinion

I am 16 years old and I have been having stomach pain (Awful), blood in stool, sores in my mouth, swollen lips, diarrhea, weight loss and no appetite for the past 6 months. It just keeps getting worse. My mom brought me to a gastro and he did stool samples and blood work but it showed nothing. Oh and by the way my aunt has one of the worse cases of crohn's Hopkins has ever seen and she got it when she was 16 and my two uncles (all on my moms side) have ulcerative colitis. So he decided to do a colonoscopy and an endoscopy which again showed nothing. He diagnosed me with IBS and put me on dicyclomine which doesn't do anything. And the other day I had some sort of scan to check for bleeding I guess.. It was some sort of x-ray thing i'm not sure what it was called. Do you think its possible I could have crohn's because thats where my symptoms point me to but all the tests come back normal.. It's really frustrating and I feel like since they don't have any proof they don't care. Someone help me please.. I just feel like they think i'm a hypochondriac or something..
 

Cat-a-Tonic

Super Moderator
Hi Molly, welcome to the forum. I would definitely get a second opinion from another doctor, it does not sound like IBS. For one thing, you do not get bleeding or unintentional weight loss with IBS. I've had multiple tests myself and I have also had all normal test results, so I understand how frustrating that can be - and I was also put on Dicyclomine for a little while, and it does nothing for me either. If I were you, I would ask your general practitioner for a referral to a new GI, one who takes your symptoms more seriously and doesn't dismiss this as being IBS. Don't give up looking for answers, you deserve to get some relief and a proper diagnosis! Good luck.
 
I see him at the end of this month and he said he still has some tests he wants to try or something..the doctors are not the best here so my mom said that if I don't get an answer in a month that I'm going to Dartmouth. Its just annoying them being so positive its not Crohns because the tests come back normal. I researched IBS and like you said unitentional weight loss and bleeding are not symptoms it makes no sense..
Thank you so much for your response!
 

Cat-a-Tonic

Super Moderator
That's good that your mom is fighting for answers for you and is going to get a second opinion if this doc can't help you. I really feel for you, having "normal" test results is so frustrating when something is obviously very wrong! I've been down that road repeatedly, all of my tests have come back normal. Fortunately, I have a good doctor who knows that my pain & symptoms are real and that they are more than IBS, and he's put me on some crohn's-specific medication (Entocort) which is working for me. So it's possible to get some relief from symptoms, even without a diagnosis. But for your sake I do hope you get a proper diagnosis soon, it is really difficult to deal with this kind of illness and not know for sure what you're dealing with or how to treat it! Let us know how your next round of tests goes and if you do end up getting a second opinion.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome Molly!! No one on here knows more about the Undiagnosed club than Cat! You're in good hands. I see you've already found her club. Best of luck to you!!
 
Hello!

Welcome :)

I hope that you get a diagnosis soon, so that you may feel well again! Did the biopsies come back from the colonoscopy and endoscopy. Sometimes when they go in it may not show much. When the samples are viewed at the lab inflamation may be present, and the biopsies can come back with results of inflamation, and or many other things.
If you are not happy or comfortable with your doctor, get another opinion. Someone that you have confidence in is important for your care.
 
When you see them ask them to tell you where the bleeding is coming from(not IBS-you don't bleed from ibs unless it has given you haemorrhoids or an anal fissure). If they can't answer that it may help them reconsider their diagnosis.
 
Thank you everyone! The biopsies did come back and they came back normal. I feel like every time I see the doctor I feel great... I feel like there not taking this seriously because they don't have any proof which is really annoying and he doesn't seem to care that I have lost 20 pounds in the past 2 months... So frustrating but thank you all for your help :)
 

Astra

Moderator
Hi Molly
and welcome

Really hope you get a second opinion and some answers soon, in the meantime, we're here for you!
lotsa luv
Joan xxx
 
This may be TMI, but I have been known to take pictures of my bloody diarrhea so that I have proof of the days I lose blood. I just use my cell phone then transfer the pics to my hard drive. That way I have something to show my gastro, if ever necessary, haha! But it's mostly a record for me and something I use to gross out my wife.:biggrin:

Maybe you can do something similar, at least with the blood in the stool, to show your doc.

EDIT: I guess you could actually document everything between visits to your doc. Then you have a record of what happened on what day. Take pics of the swelling and mouth sores and such...
 
Last edited:

e13 boy

Banned
Hi Molly

Please get yourself another opinion.If the next GI can't tell you what is wrong then go to another one & don't stop until you find out what is really going on.
The mistakes of some of the Dr's i was under when i was 3 years older than you are now led to me losing sections of my intestines.
You don't bleed if you have IBS & losing 20lb in 2 months is not a good sign.

I wish you well

e13 boy Serovera AMP Loperamide(due to short bowel)
21 yrs of CD 9 ops
Failed meds Steroids,Aza,6mp,Pentasa
 
Hi Molly. I can tell you that most of us here didn't get the diagnoses of Crohns right away. It took me 2 yrs and 4 Drs later to get the right one that knew what he was looking for. Good luck.
 
Thank you all and I have been taking pictures of my "symptoms" haha so he won't be able to say there isn't any proof. I am gonna wait till my next appointment to see what he wants to do, but if no luck in the next couple months I will seek other help. I feel like he is just so sure that it isn't Crohn's because all the tests are negative but all the symptoms point to it and it runs in my family..
 
Keep up the fight girl. I've had crohns (axial arthritis, peripheral aethritis, apthous ulcers, erythema nodosum, ulcerated bleeding colon, uveitis, depression, and insomnia) for 17 years now. Just yesterday I found a doc that listened. It's a journey that can get rough, and none of us know if it'll end. I tell you what though, you're not crazy. I'm an elite fitness trainer and always in fantastic shape and normal results. Took 15 years until I had GI symptoms, and even after they photographed and biopsied my ulcerated colon they still refused a diagnosis. It was only when the uveitis popped up did the tune begin to change. You know your body, don't take no for an answer :)
 
Your first instinct if very important and if you feel they are not diagnosing you properly, do what you have to do to feel more at ease. Its you who has to live with this body and this disease, not them, so please trust yourself and stay strong.
 
Went to the doctor today. I told him the meds he put me on are not doing anything and i showed him the sores in my mouth and the pictures I had taken of my stools.. He said that everything points to Crohn's and the fact that I have a family history of it is also a factor as well. He also said that since the stool samples and scope and other tests all came back normal it would be very rare for me to have Crohn's. He put me on 3 new meds so I will see how those work and I had more bloodwork and another x-ray scan is scheduled for next week. I also lost 10 pounds since my last appointment which was about a month and a half ago. I don't know what to think it's all very confusing and frustrating..
 
Capsule Endoscopy

Have you asked that he do a camera pill (capsule endoscopy)? My Crohn's was not visible in either upper or lower endoscopy. I really think you need this done to rule things out.
 
Had an upper GI yesterday. Not the most pleasant experience.. Again it came back normal..they said it was strange how fast it went through me about an hour ish..Other than that they didn't find anything. Blood work comes back on Monday testing to see if I have the Crohn's Gene or something..Not sure..Very frustrated not sure how much more I can deal with
 
Hi Mollypp sorry to hear about your rough road. You asked for opinions so here I go.With close to 25yrs under my belt with Crohns, I hope I can give you some food for thought.You may have heard some of this before or not . There can be info overload so just relax and use what you want. Here are some things you can consider,it has put my Crohns into remission.Lets say you do have Crohns to some degree or other.First have you been tested for Celiac disease?---Next do you drink cows milk?Have you tried to adjust your PH to more basic from acidic.Do you drink water thats chlorinated?Do you eat wheat ?I found all these and more had a big factor in my everyday well being including Crohns.Thats a few questions to start with.
 
Hi Molly! Many of us have felt the way you feel right now. Your symptoms are real and one day someone will figure out what is going on with you. Don’t give up!

Welcome to the forum!
 

ameslouise

Moderator
Hi Molly - Hang in there, girl! I hope you get some definitive answers very soon!

In the meantime, we're here for ya and there's plenty of folks here that know what it's like to have symptoms and all the signs but no dx.

- Amy
 
Saw new doctor last week. He seems to think that its still IBS despite the red flag symptoms of weight loss, fever and blood in stool. He thinks they could be unrelated to my other symptoms. So irritating. He said that crohns and ulcerative colitis are not being ruled out but just pushed to the side or something.. He put me on amitriptyline. All it does is make me super exhausted. Doesn't help with the stomach. I feel alright as long as I stay away from food...Tired of this nonsense.
 

Crohn's 35

Inactive Account
Hi Molly, welcome! I am so sorry you are being pushed to the limit. IBS is a syndrome IBD is a disease, test after tests, where showing nothing for me after blood work, ct scan, ultrasounds, colonoscopies, exploratory surgery,,, small bowel follow through and went on for a year!!!!! It took so long and it runs in my famly too. Normal bowels dont bleed and have diahreah for days on end. Dont give up and if you can get a second opinion from a well respected Gi. In the meantime get some Ensure to help you keep your nutrition going and keep the weight on. Keep fighting girl, something will show up sooner or later! :hang:
 
Hi Molly, meet Molly! And it's not just the name we have in common! Like you I suffer with terrible mouth sores and have done for years went to numerous doc's and dermatoligists but Crohns was never mentioned then the bleeding from the bowel started and dr told me i'm too young for it to be anything serious (25) after going back and forth several times and the dioreah and bleeding getting very bad (up to 30times a day) I went straight to A&E where I was first diognosed with UC but after biopsies was told it was actually Crohn's, alot more has happened since then so I wont bore you with the details but my point being your symptoms being so much like mine at the start and waiting a long time for answers I can see how awfully frustrating it must be for you, don't give up ongetting the answers you need even if it means seeing 10 different doc's! Take care and all the best.... xxx
 

ameslouise

Moderator
Hi Molly - Are you taking the Ami at night? Best to take it just before bed.

Have you had an upper GI series, small bowel follow thru and/or pill cam? These would show issues in your small intestine.

Where are you located in VT? (I lived in Burlington for 7 years). Do you have a good GI associated with a good hospital?

- Amy
 
wow, it seems I was lucky in my diagnosis! I was diagnosed at 7 and very quickly too because all the blood tests came back abnormal and pointing towards Crohns and my endoscopy showed lesions and inflammation in my ilium so they just diagnosed it on the spot pretty much! I really feel for you, it must be so frustrating.
I'm just wondering why your tests are coming back normal if you're ill?
Ask the doctor if he has done a serum C reactive protein level test (not sure what it might be called in America but he/she should know from that anyway) as this indicates your inflammation levels and is an indicator of Crohn's. also an erythrocyte sedimentation level test which also indicates inflammation. It's worth asking, these may have been the tests they missed out which could lead to a long awaited diagnosis?
xxxxxxxxxxxxxx
 
Top