Crohn's?

[smallpkg7]

Hi! First time here--
To make a long story short, I'm wondering (and have wondered for a long time) if I could have Crohn's.

A few facts: I have another autoimmune disease, T1 diabetes. For years I've had symptoms that I've seen relate to Crohn's disease. In 2002, I had a bowel obstruction (intussusception which was found on CT scan), but thankfully during tests over a couple of days it resolved on its own. Upon colonoscopy, ulcerations were found (I have pictures) in the area of the ileocecal valve. The GI doc was trying to rule out Crohn's, but I stopped going to him since he was not very helpful and not very good at listening.

I have symptoms most of the time, but they are worse about three times/year. They include diarrhea, lack of appetite, bloating/discomfort, right-sided pain (the same area as the ulcerations), epigastric cramping, mouth ulcers, aching joints, chills, extreme fatigue. When the symptoms are less severe, I almost feel human!

Do you think I should find a doctor to take me seriously? I need to feel better!

Thanks to everyone who responds...

 

[GoJohnnyGo]

Those are classic symptoms. I'd seek a second opinion.

 

[jed]

never know what it could be, we are not doctors here

keep persisting a doctor till you get some relief.

 

[Guest]

i agree - i think that if its something which recurs time & time again, it needs diagnosing. good luck, and let us know how things go.

 

[smallpkg7]

Those are classic symptoms. I'd seek a second opinion.

Thank you! I think I'll make an appt with my internist who I haven't seen for awhile. She was the one who diagnosed the intussusception.

 

[smallpkg7]

i agree - i think that if its something which recurs time & time again, it needs diagnosing. good luck, and let us know how things go.

It has recurred time and time again over the years. I remember experiencing symptoms when I was in my early 20's and I'm 57 now (yikes!). :eek2:

 

[smallpkg7]

It sounds like it could be but you really need to rule out other things. If you are looking for a quick diagnosis, it usually doesnt happen. There are tests, blood work and more tests to show the markers for Crohns. It can take up to a year, depends on your stages and meds you are on. Prednisone really masks symptoms, anti inflammatories do too. Good luck,hope you find a GI that is helpful. Welcome to the forum.

Thank you for the good wishes and the welcome! I do take NSAIDs regularly for lower back problems, but prednisone only when getting spinal injections. Prednisone screws up my blood sugars too much, so I like to stay away from it as much as possible.

Mary

 

[katiesue1506]

Hey... welcome to the forum! I thought I'd let you know that NSAIDs are very bad on the gut. They are processed through the stomach and can cause ulcers, generally people with Crohn's are told to avoid these at all costs. I know you don't have a diagnosis, but if you are having intestinal problems I'd switch to Tylenol. We aren't supposed to take Advil or Ibuprofen either. Tylenol is processed in the liver which is why it is allowed. Just thought I'd let you know!

 

[smallpkg7]

never know what it could be, we are not doctors here

keep persisting a doctor till you get some relief.

Thank you Jed. I understand the "we're not doctors" thing. I spend some time on Diabetes Daily.com, and we see people there wanting a diagnosis too. I appreciate your input--I need to have some encouragement to persist since I'm not always trusting of the doctors, especially if I can manage something on my own.

Oh, I am right in thinking that Crohn's is genetic, aren't I? I think that's what I've read...also Celiacs. My diabetes doctor tested me for celiacs, but the blood tests came back negative.

 

[smallpkg7]

Hey... welcome to the forum! I thought I'd let you know that NSAIDs are very bad on the gut. They are processed through the stomach and can cause ulcers, generally people with Crohn's are told to avoid these at all costs. I know you don't have a diagnosis, but if you are having intestinal problems I'd switch to Tylenol. We aren't supposed to take Advil or Ibuprofen either. Tylenol is processed in the liver which is why it is allowed. Just thought I'd let you know!

Oh, thank you Katiesue! I took Celebrex for probably 9 years to enable me to continue working full-time, but have changed it down to Naproxyn. If I don't take it, all my joints ache so much within a day and I have difficulty sleeping. My job is very physically challenging...but if it's bad for me I guess I should try Tylenol. I'll start tomorrow with that. I really appreciate you and others taking the time to clue me in!

Mary

 

[jed]

no probs matey

there is a bigger knowledge base in the people here than virtually any doctor i've ever talked to about crohns, but yeah, the docs are the ones with your blood tests and their fingers up your butt, so their the ones i'd be listening to

Crohns does seem to have some genetic components, but there are many of us here with no family history at all. just luck of the draw i suppose, and we got the short straw.

if your trusting of your doc's opinion, find another i say keep going untill you find one which you trust. personally i'd rather a diagnosis from a doctor that seems knowledgable about the disease, rather than a doctor i like that keeps going for the run around.

keep us up to date.

and enjoy the preperation if you go for a colonoscopy

 

[smallpkg7]

no probs matey

there is a bigger knowledge base in the people here than virtually any doctor i've ever talked to about crohns, but yeah, the docs are the ones with your blood tests and their fingers up your butt, so their the ones i'd be listening to

Crohns does seem to have some genetic components, but there are many of us here with no family history at all. just luck of the draw i suppose, and we got the short straw.

if your trusting of your doc's opinion, find another i say keep going untill you find one which you trust. personally i'd rather a diagnosis from a doctor that seems knowledgable about the disease, rather than a doctor i like that keeps going for the run around.

keep us up to date.

and enjoy the preperation if you go for a colonoscopy

Will do Jed. I've had a couple of colonoscopies--what fun! But it's been over 6 years now so I'm overdue. We have docs that do them at our surgery center, but I don't know if I want my close coworkers involved. :blush:

Mary

 

[D Bergy]

I would see a Gastroenterologist if possible. This is beyond the ability of most General Practitioners to diagnose.

Dan

 

[smallpkg7]

A Gi is better than an internist, at least I found that.

I saw my internist yesterday. She's ordered stool tests (which I did today--yuck) and blood tests. She told me to make an appt with the GI, so I have one scheduled on Dec 11th. We'll see what happens now. She said he should do a gastric-emptying test.

 

[smallpkg7]

Gastric-emptying test???? That is a new one.

That test would be done to test for gastroparesis since I've been diabetic for many years.

 

[smallpkg7]

Oh my double whammy.... would be not wise to ever be on prednisone. What ever tests you need to have to see if you are officially dx, it will help your mind a bit at ease.

Yes, at this point I'm less concerned with what it is--I just want relief!

 

[soupdragon69]

Hi there and welcome to the forum!

I had gastric emptying test - had to eat mildly radioactive scrambled egg and then jump up and down off a scanning table for 3hrs every 30mins whilst they tracted it through my gut. My GI said I had fast emptying from my stomach then it slowed during the first part of my small bowel and speeded up again towards the last bit of my small bowel into my large. Overall he said I was at the very very fast end of normal. Made him curious.

I also had a bile salts test where I swallowed a radio tagged "pill" and had 2 scans exactly to the hour one week apart. It showed I wasnt reabsorbing my bile salts hardly at all. This can contribute to diahorrea and also my GI said it showed there was something going on with my terminal ileum. I had a colonoscopy within a few mins of us discussing those results that day and was confirmed crohns ileitus. He pulled me into clinic within 2wks of it and was commenced on treatment - that was Dec 06.

Just some thoughts that might help. Hope you get answers. If its any consolation I was also tested for Coeliac and came up negative but they now think I have big intolerance to gluten and dairy along with multiple other foods. So I try to stay away from them as much as possible and am on a very strict regime.

Welcome. Keep us posted.

 

[smallpkg7]

Hi there and welcome to the forum!

I had gastric emptying test - had to eat mildly radioactive scrambled egg and then jump up and down off a scanning table for 3hrs every 30mins whilst they tracted it through my gut. My GI said I had fast emptying from my stomach then it slowed during the first part of my small bowel and speeded up again towards the last bit of my small bowel into my large. Overall he said I was at the very very fast end of normal. Made him curious.

I also had a bile salts test where I swallowed a radio tagged "pill" and had 2 scans exactly to the hour one week apart. It showed I wasnt reabsorbing my bile salts hardly at all. This can contribute to diahorrea and also my GI said it showed there was something going on with my terminal ileum. I had a colonoscopy within a few mins of us discussing those results that day and was confirmed crohns ileitus. He pulled me into clinic within 2wks of it and was commenced on treatment - that was Dec 06.

Just some thoughts that might help. Hope you get answers. If its any consolation I was also tested for Coeliac and came up negative but they now think I have big intolerance to gluten and dairy along with multiple other foods. So I try to stay away from them as much as possible and am on a very strict regime.

Welcome. Keep us posted.

Sure will--thank you! I wonder if they use anything but egg--that's one thing that gives me almost instant D! hmmm..
I'm glad you got your answers! It must have been a relief to begin treatment.

 

[soupdragon69]

I think they can use something else but not sure what... they told me in the letter prior to the test to tell them asap if I had an egg allergy so I am assuming they have an alternative.

I find if I eat eggs certain ways they cause me to run. Fried in particular trigger me and sometimes scrambled too. I seem to be ok with poached or boiled in moderation. Probably something to do with fat being added to the first two.

Yes it was a relief to finally be diagnosed as I was told it was all in my head and was making mountains out of molehills. Thankfully I have a great GP and gastro cons now but took me 3 years to get the courage up to tell my GP I was having such difficulty and pain because of how I had been treated previously.

Please hang in there. You will find someone who will find out what is causing the problems you have and you will have the appropriate treatment too. Keep asking them questions and us too! We will help where we can even if its just as a sounding board or somewhere to have a yell! We do all understand what you are going through.

 

[smallpkg7]

I think they can use something else but not sure what... they told me in the letter prior to the test to tell them asap if I had an egg allergy so I am assuming they have an alternative.

I find if I eat eggs certain ways they cause me to run. Fried in particular trigger me and sometimes scrambled too. I seem to be ok with poached or boiled in moderation. Probably something to do with fat being added to the first two.

Yes it was a relief to finally be diagnosed as I was told it was all in my head and was making mountains out of molehills. Thankfully I have a great GP and gastro cons now but took me 3 years to get the courage up to tell my GP I was having such difficulty and pain because of how I had been treated previously.

Please hang in there. You will find someone who will find out what is causing the problems you have and you will have the appropriate treatment too. Keep asking them questions and us too! We will help where we can even if its just as a sounding board or somewhere to have a yell! We do all understand what you are going through.

Thank you Jan, I sure appreciate your willingness to help.

Mary