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New to forum because the crohns is getting old

Hi. I joined last month after perusing the forum regularly when ill looking for answers. I was finally like, well I'm here often enough- may as well join.

I was diagnosed with crohns (I don't capitalize it on purpose, and I don't call it 'mine') and GERD in the fall of 2004 on turning 18 and entering college. At the time I had somewhere in the neighborhood of 50 bleeding ulcers. Oddly enough, I didn't go to my doctor about pain but because I had blood in my stool...which I only knew to be a sign of cancer. My doctor did not believe me and characterized me as depressed and having difficulty adjusting to going away to college due to the weight loss, poor nutrition and extreme fatigue. The blood kept appearing and when I was home for Thanksgiving I finally just brought my mom into the bathroom to 'show her something'. She was horrified. She started crying and apologizing profusely for not taking me seriously and in to the doctor we went. This time when he said it was depression she said, "No. I've seen it. Something is wrong and I want tests run." And of course they found loads of inflammation.

Fast forward to today. I've been having a flare for about 2-3 years. Not even sure- time flies when you're having fun. There have been periods in the meantime that have been good, relatively speaking, but not without the assistance of my handy-dandy friend Prednisone. My love.

In the past year I started getting mouth sores at the corners of my mouth generally indicating Flare to Come. Even the sores inside my mouth became more elaborate than the usual canker sores I've had all my life; I get sores lining the very edge of my inner lip in almost a line (I've discussed this elsewhere on another thread). Last fall my eyes started getting so dry at night that I would awake throughout the night from a deep sleep due to discomfort and in the morning they'd be swollen (swelling would usually go down relatively quickly, from 15 min to about an hour). This is still happening to a lesser degree and almost never waking me at night anymore. So, on to the next!

I've always had periodic joint pain, especially as a swimmer in highschool. Last 6-9 months have been incredible. I have had days I roll myself out of bed in order to get the momentum necessary to get out of bed without bending my knee(s) (plural depending on the day). My hip gave out about two weeks ago when I stood up from sitting on the couch watching a show. I almost fell over, had a hard time walking for a while and was in quite a bit of pain. My favorite one is this new thing where I wake up in the middle of the night with my whole body aching in torturous pain. Did I mention I'm 25? These bouts don't happen in any predictive manner, or even necessarily on consecutive days. I do notice that the likelihood and severity of my joint pain seems to be an accompaniment to the crohns.

Also my potassium levels are consistently low. As such, I was put on a prescription supplement in the fall during a bad flare. I also took it upon myself to add a magnesium supplement (to properly utilize the potassium I get) and emphasized potassium rich foods in my diet. They re-tested me after that and I had a 3.6 on the scale of 3.6-5.2 for a safe range. They rechecked my potassium levels a little over a month ago and I was low again. My doctor said it was probably due to issues of absorption from the crohns so he put me on a liquid prescription supplement and retested 2 weeks later. Again, I tested at 3.6 so he said I'm good. I'm not so sure. With all of the care I take to eat potassium rich foods in addition to the prescription and taking the magnesium....and my test results from the colonoscopy last Thursday (later noted, sorry for the disorganization, I did this on my phone) not displaying any alarming crohns issues... I just dont know.

So last week, having a TON of nausea, diarrhea (mild to moderate), pain where I get crohns pain, mouth sores and intermittent joint pain I finally called my GI. I insisted that rather than putting me on prednisone and then checking me out after my immune system has been knocked on its ass that he take a look in me first. I had stricturing of the esophagus which he opened up, a hiatal hernia and inflammation in my right colon which he classified as mild. He indicated that I don't need to go on any of the scary Meds given the tour. This was relieving but frustrating. My pain and symptoms don't seem to match what he saw. I have a follow up appointment to discuss it with him this Friday.

I don't know what to do. I am concerned we are missing some third variable that my intestines can appear so mild while everything seems to be going wicked on me. I absolutely positively have crohns, there is no question about that. But I'm really concerned we are missing something. And my sick days are so far gone that I used
a vacation day for my colonoscopy and EGD last week, if that's not the most hysterically ironic thing ever.

So basically, I have no idea what's going on. My fatigue is rampantly out of control and I know I need to be seen. Does anyone have any pointers or ideas? There's so much knowledge among us...anything you may have could help. I appreciate it.
 
Last edited:

Trysha

Moderator
Staff member
Hello
What a terrible time you are having.
Have you had all the lab workup given to Crohns patients like B12, Calcium, Ferritin
CBC. ESR, CRP, etc.
When things are really bad have you thought of going to ER, it might give you a different slant on things and perhaps pick up where your present doctor leaves off.
Seem to be maybe something is missing on the investigational side, but I could be wrong.
What other kinds of investigations have you had to examine the small bowel, for instance MRI enteroscopy, Capsule endoscopy, barium studies etc?
The scopes are good for large bowel evaluation and upper GI, but you don't mention any tests of your small bowel.
Maybe you need another GI opinion.
Sorry I can't be more helpful
Feel better soon
Hugs and best wishes
Trysha
 
Hi TWSS,

Sorry to hear you are having so much trouble. Getting proper diagnosis will go a long ways, and that means getting scoped. Then the goal is finding the right combination of meds to keep you back on your feet. I'm sure it's all overwhelming and no fun, but you are certainly doing a good job trying to eat potassium rich foods. I have an ileostomy now (total colectomy many years ago), so I can get dehydrated. Two things I do which are very easy- I make my own gatorade and I am an avid juicer. Here is a great recipe for homemade gatorade: http://www.instructables.com/id/Make-Your-Own-Damn-Sports-Drink/ Very easy to make, it's cheap and a good source of potassium.

Good luck!
Hobbes650
 
Wow I am sorry to hear about everything you're going through. Did you say you got a colonoscopy already? If not then def do that.

What is annoying is to have your doctor say you are "fine" when you know your not. I just went to the ER and wasn't really helped because my blood work was good, and pee test negative...whatever they were testing for..

Just like you, I had really bad hip pain. I could hardly walk straight or sleep well. Got xrayed, my hips were "fine". Just given Vicodin. What I read, is that when you have an autoimmune disease, your immune system starts attacking other parts of your body, such as your healthy tissues in between your joints hence joint pain. Try to get tested to see if your bones and tissues are still healthy, or at least mention that to your doctor. It is not just the intestine that you want to have checked out anymore when it seems to have spread to the rest of your body.

Sorry I can't be more help. Stay strong :]
 
Yeah, I had an EGD and a colonoscopy last Thursday. My appointment to discuss with my GI is Friday morning. I think I want a full 'work-up' of labs and blood tests. I mean, I am already going to discuss going to the Mayo clinic or something to make sure we aren't missing something, but first I would like lab work I think so that I have a more clear picture. I still attribute my issues to the crohns despite my GI's skepticism about the severity of my symptoms and what he saw Thursday.

I have vicodin for the pain as well. But it gives me anxiety because of the panic disorder. I know, probably one of the only people who gets anxiety from vicodin. Yesterday morning I felt kind of good. Today, not so much. It's like a little hamster wheel of hell.
 

David

Co-Founder
Location
Naples, Florida
Hi there and thank you for sharing your story!

Sorry for centering in on just one thing, but does the line at the corner of your mouth, does it look something like this:



I'm so sorry you're having so much trouble :(

*hugs*
 

David

Co-Founder
Location
Naples, Florida
Some will refer to it as angular stomatitis, others will call it angular cheilitis. The most common causes are iron deficiency anemia and vitamin B2 (not 12, 2) deficiency. If ThatsWhatSheSaid has this and mouth ulcers as well I'd surmise they're likely deficient in various B vitamins.
 

David

Co-Founder
Location
Naples, Florida
Please don't blindly supplement. In my opinion, supplements should be treated as medications and only taken when necessary. If you're low or not in the optimal range for iron then sure. But please do it under the care of a doctor who is regularly monitoring your levels :)
 
Yes that's basically what it looks like. So it is B2 levels that may be at issue then? I know that last time my B12 was checked (no idea when that was because I have draws so frequently) it was 673 which I believe was actually normal though I don't recall the range off the top of my head. My Vit D was 35 which the nurse said was normal but I was on the nih.gov site yesterday and it indicated there that 30-50 is 'inadequate for overall bone health'. So that will definitely be a topic of discussion tomorrow. I actually have a list going this time though I dreamt last night that I forgot it.
 

David

Co-Founder
Location
Naples, Florida
It could be B2, it could be another B vitamin, it could be iron. It could be due to a completely different reason. :) It's something to look into in my opinion.

We only allow signatures to show once per page of threads.
 
David, I saw my GI today and he said that he hasn't ever seen B2 being low and as such doesn't check. He did have my B12 checked and Vit D. I asked about the corner mouth sore issue and being related to possible B2 and iron deficencies and he said that the corner sores are likely caused by stress.

The thing is, this doctor is truly a great doctor. But I don't know if he has already made up his mind or if it is just something in communication....like that he has checked a bunch of factors that I am not aware of and they would raise the necessary flags or what? I made another thread going into it a smidge (Desperate. Really.). He actually sat there with the lab order and asked what I wanted to be checked. It wasn't condescending but it was a little overwhelming because I was crying (which is how he sees me 9 times out of 10). I know he did a CBC, B12 and D3 check. I don't know what to do.

I also contacted Mayo Clinic in MN and got a call back today about scheduling and they wanted to know if I wanted an appointment with the GI specialists or Internal Medicine. I said Internal Medicine because my GI believes that the crohns is not severe enough to cause my symptoms and as such I should be having other things considered (he mentioned fibromyalgia multiple times). But I am wondering if I would be better off calling back and requesting to see the GI specialists there (since I still think everything is related). I don't know.
 

David

Co-Founder
Location
Naples, Florida
"I've never seen it low so I never check"

Hmmm. How could I possibly debate this logic?

This is my fault, I'm really sorry :( I need to better prepare all of you for requesting these types of tests. I'll ponder how I'm going to do that so situations like this can be avoided in the future. Now, your sores can be caused by various issues, but people with CD often have nutritional deficiencies and that should be evaluated when such symptoms present themselves. For example, this highly reputable source says"
Riboflavin deficiency is rarely found in isolation; it occurs frequently in combination with deficiencies of other water-soluble vitamins.
Crohnies are commonly deficient in other water soluble vitamins such as B9 and B12. In addition, B2 is shown to play an important part in iron handling and contributes to anemia which is chronic in Crohnies. Riboflavin (vitamin B2) intake is significantly lower in IBD patients than in controls.

I could do this all day long but will end with this one:
For patients not responding to simple therapeutic measures, the next appropriate step is to arrange full hematological screening with measurements of hemoglobin, mean corpuscular volume, folate, vitamin B2, vitamin B6, vitamin B12, serum iron, ferritin, transferrin, and fasting blood glucose. Nutritional deficiencies, especially of iron and B vitamins, are important in the development of angular cheilitis.
Crohn's Disease is characterized by malabsorption and nutritional deficiencies. When the signposts are staring doctors in the face for these deficiencies they damn well better know what they are so they can act on them.

Stress? Pffffffffffffffft.
 

David

Co-Founder
Location
Naples, Florida
Yes. I read what you wrote far too often here:

In the past year I started getting mouth sores at the corners of my mouth generally indicating Flare to Come
This forum is an absolute wealth of information as to what people with IBD truly experience and when.

I'm actually of the opinion that if they did some studies monitoring patients in remission, one of the things they'd find in patients who later come out of remission is a drop in various vitamin and mineral levels. I think they're warning signs and in some cases, contribute to the immunodeficiency we see with Crohn's Disease.
 
I know. I guess because he didn't see anything big going on it makes me doubt what I think I know about my body. Which makes me worry that something else is wrong too (ie Lupus) and if that's the case I don't want to miss it and have damage done by not treating it. But I don't want to have damage done by not treating the crohns either. I know a decent amount about fibromyalgia and it definitely does not sound like what I am experiencing.
 
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