Crohn's Disease Forum » General IBD Discussion » Need advice, stomach pain not my crohns

01-02-2013, 04:23 AM   #1
tixbut's Avatar
Join Date: Mar 2012
Location: Melbourne, Victoria, Australia
Need advice, stomach pain not my crohns

So i have had crohns for a while now and i am on humira injections.
Basically in June i started getting all the same symptoms as my crohns flare up (except no bleeding), so i had a colonoscopy which came back clean and not crohns.
my specialist just said it was ibs and sent me away. I saw a dietitian in July because i am fructose intol and have been on the 'low fodmap' diet ever since. I'm in constant pain and can hardly eat.
Now it's January and i'm just wondering what you guys think? Im seeing a new specialist in 2 weeks, what sort of questions should i bring up with him? and has anyone else gone through something like this?

Thank so much for taking the time to read.
01-02-2013, 06:02 AM   #2
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acheallova's Avatar
Join Date: Sep 2012
Location: Clark, Wyoming
Hey tix, sorry to hear about your ailments.
Don't have any great words of wisdom but curious what other meds you're on? Have they done other testing_ MRI/MRE or CT to look for other causes? Have you seen an OB/GYN? Sometimes there are women issues going on that can cause serious pain, or gallstones/ kidney stones, infections etc.... might be worth asking about.
Have you tried heating pads/hot water bottle or tolerable hot baths to help lessen the pain? Are you on any pain meds currently? Might talk to doc about this.
Keep your head up! Best of luck to you. Hope the new doc listens to you, works with you to help find the root cause and get you out of pain. Keep us informed . Thoughts and prayers with you. -hugs-
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01-02-2013, 06:15 AM   #3
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Hi Tixbut, sorry you are having symptoms :-( I agree, it might be useful to have some other tests. There's a chance it might be Crohn's pain but the inflammation is lurking somewhere that they can't reach with the colonoscopy. How have your blood results been? Unfortunately, they are not always a reliable marker of disease activity either.
Dx Crohn's terminal ileum April 2011
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01-02-2013, 06:59 AM   #4
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As grumble says the Crohn's could have moved elsewhere as it can effect us anywhere from the top to the bottom
Could be worth asking for a pill cam ?

I still find it hard to understand why anyone with Crohns would be given an IBS diagnosis at all.
It is a symptom-based diagnosis with no known organic cause - I think once you have been diagnosed with Crohns that's your physical cause for tummy trouble right there !
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01-02-2013, 07:31 AM   #5
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Location: philadelphia, Pennsylvania

Have you ever had an MRI of your abdomen? What tests have the doctors preformed?

I have UC and had to deal with a similar situation for over 10 years. I had intermittent episodes of abdominal pain, that at first I thought were associated with my UC. I had every test under the sun more than once through out the years. I was even scheduled for abdominal surgery on 3 separate occasions, but each time the surgeons cancelled the procedure when they didn't know what was wrong or what organ what to remove.

My physicians would constantly tell me either my UC was in remission or that I had relatively minor inflammation and that I should not be experiencing abdominal pain with the severity that I was describing. Like you, I was given a diagnosis of IBS as well, but that diagnosis was meaningless because it did nothing to address my abdominal pain.

Several years later, after I was hospitalized for 5 days with the most gut wrenching abdominal pain that I ever remember experiencing, I got fed up with everyone telling me that the pain I was wasn't there, or that it was due to anxiety and all in my head. I had started keeping a journal of everything I ate, along my daily activities and also recorded when I experienced any symptoms, whether I thought they were related or not. Turns out that after a few months of keeping that journal I discovered that it was porphyria that was complicating the problem in my case, not IBS. For me, keeping that journal was very useful for identifying what was actually going on.

I am not suggesting that Porphyria is causing your symptoms, in fact it should be near the bottom of the list since it is a very rare disorder. However, doing something as simple as keeping a journal may point you or your doctors in the right direction for a proper diagnosis.

The list of differential diagnosis for abdominal pain is pretty wide. So if you record relevant events you may be able to rule one diagnosis out over another and may even find subtleties that could help point you in the right direction. For example you might want to write down if the pain localized to one part of your abdomen or if it moves around, if you experiencing diarrhea or constipation or both. How severe is the pain? Does the pain ever get so severe that it wakes you up while you are sleeping? Also, keeping tracking of when you are having the most severe symptoms in your log with respect to your menstrual cycle may be particularly useful. Sometimes stress can be a precipitating factor for abdominal pain so you may want to note when or if you are experiencing a lot of stress in your log as well. Note any inconsistencies. In other words, try record your daily activities along with any symptoms you may have, particularly if you experience any symptoms that you think might not be related.

I think that keeping a journal is an invaluable tool for establishing patterns and/or identifying relevant subtleties which may help to significantly narrow the differential diagnosis window.

Good luck, and keep us posted I hope you get some relief soon!
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01-02-2013, 09:23 AM   #6
tixbut's Avatar
Join Date: Mar 2012
Location: Melbourne, Victoria, Australia
firstly i want to thank you guys for responding so quickly
I have only had a test to check if it is a bacterial infection(other than the colonoscopy) because i MADE my doctor do it (for piece of mind).
I am on anti-depressants (Ciprimil) 2 a day, Humira every 2 weeks and pain meds ranging from panadol to morphine.
My doctors never even said anything about an MRI i am definitely going to bring that up, they just kept saying they don't know and give me more pain meds :|
I do use heat packs i actually swear by them
I had no idea that if your colonoscopy came back clear that it could still be crohns. I swear no one is telling me anything (maybe my fault as i haven't been speaking up)
and I AGREE stop saying we have IBS so it makes your job easier, i am more than happy to pay for the tests to get it done they just need to explain it all to me.

For the diary i think thats a great idea! i have a food one that lasted 7 weeks which showed when i had pain and what i was eating, but i might start a new one with the scale of pain.

Again thank you so much! it's so nice to have somewhere i can come and get support from people who understand whats going on.

I will keep you posted on how it all goes.
01-02-2013, 10:42 AM   #7
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Hmm, this sounds familiar! I'm having similar problems. My Crohn's is supposed to be in remission (colonoscopy, pill cam, and blood tests all clear) but I'm still experiencing symptoms on a daily basis. I had to cut back my hours at work because of it. When I see my GP about it, he tells me to talk to my GI and my GI tells me to talk to my GYN. It's like I'm a hot potato.

Honestly, I don't know what advice to give you because I'm in the same boat. I did want to stop in and let you know you're not alone, though!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

01-02-2013, 11:31 AM   #8
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Before I was diagnosed with crohn's, I had stomachaches every single day for 6 months. No matter what I ate. I went to my GP and he sent for a colonoscopy and they saw ulcers and inflammation in ileum and aroungd colon area. CROHNS!!!! That was my only symptom besides occasinal bouts of diarrhea when I ate certain things!
Now the Dr. says I have IBS because my catscan didn't show any abnormalities of the intestines. Do they show inside as well as outside? Anyone know? I'm so sick of the run around.
01-22-2013, 06:55 AM   #9
tixbut's Avatar
Join Date: Mar 2012
Location: Melbourne, Victoria, Australia
hey guys! im back to update you with what has happened...I went to a new GI (HE IS AMAZING) He thinks my pain is due to nerve damage in my gut so im off to try gut hypnotherapy, to help stop the nerves pain connecting to my brain.
I cried in his office because he listened to me and didn't just say it's IBS!
Im really excited to try the hypnotherapy as im a big believer in those things anyway, so anyone out there that is having no luck with a diagnoses from pain, ask you GI about Gut Hypnotherapy
Again thanks for all of your caring words
01-22-2013, 07:02 AM   #10
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Join Date: Dec 2012
Location: Georgia
Oh that is just a wonderful feeling in itself - knowing you have a professional on your side!! My first GI was meh, but my second GI, when he said "let's figure you out, I think we can do it" I was so happy.

Personally I think hypnotherapy helps with the mental aspect of what's causing your symptoms...which is just as real in causing them. Stress, worry, depression all contribute. Best of luck with this! Whatever works, works.
Dx Gastritis/GERD/maybe IBS - Jan. 2013
01-22-2013, 09:29 AM   #11
Join Date: Jan 2013
Location: East Stroudsburg, Pennsylvania
Tixbut, sorry to hear your not doing well, oddly enough, I am experiencing the same situation. I too started Humira recently (3 months ago) and when they do the testing its not my crohns so now I have crohns like symptoms but no crohns present. I too am looking for a new specialist however it is hard after going to the same doctor for 14 years. Some questions I would ask is every question that comes to mind even if it feels like it is simple or not relevant. There are so many times that I wish I had asked a question after I leave the doctors office. It helps me to write down my questions I have. Good luck and I wish you well
01-22-2013, 09:31 AM   #12
Join Date: Jan 2013
Location: East Stroudsburg, Pennsylvania
So good to hear! I am def going to ask my doctor because I believe I have the same thing because no matter what ibs medicine they put me on it doesnt work.

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