Body pain and funky looking eyelids

[Arin B]

Hi Friends,
My illness is taking over! Your wisdom is greatly appreciated!
My symptoms range from extreme fatigue, random diarrhea (my personal favorite), a dysfunctional and since removed gallbladder, mild fever, nausea (really intense at times), pain in abdomen and in my knees/shoulders/wrists, funky looking eyelids (it's like they swell up or something?), heartburn, loss of appetite, weight loss, etc. I've been dealing with symptoms for years, but it's gotten so bad lately that I can't work. I've always been an athlete but I can't get enough calories to maintain any kind of exercise.

My internist says he thinks I've got an immune disorder. My colonoscopy came back normal. Endo came back as swollen/cobblestone patterned stomach. Capsule came back normal. My GI now says he thinks I've got severe IBS, which he diagnosed me with like 5 years ago. The IBS drugs didn't help then, and I dont think they'll help now. I've bawled my eyes out and am beginning to wonder if I'm going crazy. Crohnies are the only people I can relate to so here I am.... Anyone had this hard of a time diagnosing Crohn's (or whatever else was plaguing them)? Any thoughts?? THANK YOU SO MUCH

 

[Arin B]

Nope, my Dr hasn't offered anything to help the inflammation, nausea, etc. I'm going to see an immune specialist next week... so maybe he can shed some new light on the matter? My symptoms don't seem to match IBS.
Thanks, Peaches!! I appreciate your perspective!

 

[imisspopcorn]

:welcome: Erin

Wow, there are quite a few people here with out a definitive diagnosis...I can't imagine how frustrated you are.
Cobble stone lesions in the stomach really sounds crohn's like to me...But I am not a doctor???

I hope you get some answers soon. I hope you can look through some of the other threads for similar symptoms. It might help you.

We are gald you found this forum. Good luck

 

[Guest]

hi Arin, & welcome

sorry you're having such troubles just now. i know Crohn's can be really difficult to diagnose accurately sometimes, so maybe it is simply a case of them not finding the affected part yet. but on the other hand, IBS can be pretty traumatic at its' worst, so maybe your GI is right.

has he given you any indication of which drugs he's thinking of putting you on?

 

[shazamataz]

Hi Arin, sounds like a very frustrating situation to be in - sorry you are feeling so unwell.
I guess what you do is keep pushing until you get answers!
good luck with getting some relief

Shaz

 

[NatalieMT]

Hey Arin - welcome here! Big hugs, so sorry to hear you are having such a hard time at the moment.

Crohn's is a very weird disease, it's up and down and can really hide in your body as far as I'm aware. Just because you've had a normal colonoscopy I wouldn't say a diagnosis of Crohn's or another form of IBD should be ruled out - especially given all your other symptoms and those cobblestone lesions - they don't sound good. However from what you have said you have had extensive testing done. What about your bloods? I was initially diagnosed with IBS but then I became very sick, so I ended up hospital for a couple of weeks - mainly due to rectal bleeding and my electrolytes being totally off whack. It was only then it was obvious my symptoms were down to something more sinister than IBS and it was confirmed I had Crohn's by a later colonoscopy.

What medication have you been put on? I'd be tempted to see how it goes and if it doesn't help go back to the GI and ask him to consider something else. Steroids are probably the first line treatment to calm an IBD flare and personally for me they've always been really effective and brought some great relief. After that it's about maintenance. I'm really hope you get some answers soon though!

 

[pewpewlasers]

Have they looked into Celiac Disease?

 

[Cookie]

It was only then it was obvious my symptoms were down to something more sinister than IBS and it was confirmed I had Crohn's by a later colonoscopy.

Sinister...I can't think of a more appropriate word to describe this disease.

Arin, good luck finding the answers you need. This may be a really stupid question, but have they done bloodwork?

 

[Arin B]

Hi All,
In repsonse to your questions: Yes, they've done bloodwork, and the only thing they've found is general signs of imflammation...? Elevated C-reactive-protein-something? But my GI didn't give me anything for the inflammation, and he wants to put me on Lotronex for IBS. I did some research and the drug has apparently been pulled from the Euro drug market and some people have died taking it. Plus, I don't know what it's going to do for my eye problems, my fevers and fatigue, spontaneous arthritis, etc. Anyone ever used this Lotronex?? THANKS A TON FOR YOU RESPONSES, IT REALLY HELPS

 

[Arin B]

Thanks, Peaches. Those are all the questions that I'm asking myself and I'm wondering if my GI has just been out to lunch for the last couple weeks... Q for you all: Do you get really, really fatigued with this disease? Like so much so that it's hard to get out of bed? I slept for 14 hours last night and woke up with a new sore in my mouth and fever again...
Wow, it's amazing how much this forum helps the spirits! You guys are awesome!

 

[NatalieMT]

Your GI seems like a real pain in the butt. I don't understand why if you have an elevated CRP and signs of inflammation they wouldn't taken action to help you. Have you considered a second opinion? I know it might seem like a lot of hassle but things didn't move forward for me until I found a specialist who was really knowledgable and who was really positive about finding a solution for me and getting my life back on track.

I don't know anything about Lotronex though sorry, apart from what I have read online, I've never taken it either so I can't give any advice on that one.

I do get very very tired with my Crohn's - it's normal for me to sleep during the daytime due to sheer exhaustion. Hence why I can only work 12 hours a week at the moment, not great considering I have no other source of income. Funnily enough I can't sleep at night though due to being in so much pain, both in my lower right quadrant and in my joints. It's too painful for me to turn over because my neck, shoulders, elbows and wrists lock up. My gastroenterologist has told me however that when my condition is more stable they would hope this improves too.

 

[Arin B]

Wow, Natalie, sounds like our symptoms are familiar. I too, have pain in my neck and shoulder that is so severe sometimes that I totally lock up. I'll missed days of work from it... and then it just disappears! i thought it was a slipped disk or something, but my MRI didn't really slow much "slippage" for all the pain I've had. I really, really hope you can get some relief!

 

[Ransom5909]

Arin, I'm new to the forum too, actually just joined today. I'm somewhat in the same boat as you, but I have just started into the tests and speculation. At first I thought mine was reproductive related because I have a history or ovarian cysts, they said the pain was due to possible Endometriosis and wanted me to have surgery, whether I had it or not for sure.

I went for a second opinion to a highly recommended OBGYN, told her my symptoms...constant dull abdominal pain with spurts of sharp shooting pain in the lower right and sometimes left, extreme fatigue, painful joints, nausea, hot flashes/fever that did not last long, irregular bowels, feeling of tearing and or pain during bowel movements and some blood, loss of appetite due to pain or for no reason at all, sometimes can't sit because the pain is so bad and have to change positions to try and make it feel better.

But no one can give me a definite answer. Blood work is normal. Went to see a GI doctor, who thinks its IBS, put me on Bentyl to "calm my system" which it does not do, still have the pain, tiredness, irregular bowels, etc. I called the office yesterday and got the blood work results and told them that the medicine is not working and am waiting to hear back. Hopefully they call today. I have not had a colonoscopy yet, but I am kind of wanting them to do one to see if I have Crohn's or not, my grandmother had it pretty bad and I know it runs in families sometimes.

I'm just ready for answers.

 

[Cookie]

When I was initially diagnosed, by doctor sent me to a GI for a colonoscopy based on my bloodwork showing signs of inflammation. He said this was an indicator of IBD over IBS.

Another little story (to be taken at face value): When I first started having symptoms and had no GP, I picked a random doc from the internet. He turned out to be this like 80 year old guy and a bit of a quack, but something that he said sticks out in my head. I was having constant (20+) episodes of D per day and he asked me if I ever wake up in the middle of the night with D. I told him I did, and he said (matter of factly), "then you have colitis in your colon, because you will not wake up at night with IBS". I didn't totally understand his explanation, something along the lines of IBS having a neurological component that is inactive while you sleep. At any rate, he treated me with old school sulfa drugs (that made me vomit) and that was that. I finally went to a new doc who help me get a definitive diagnosis.

The only reason I mention this is because this guy was old and may be resorting back to the days when modern means of diagnosis weren't available. Bottom line is, he was (almost) right.

 

[farm]

IMO that cobblestone effect is synonamis with Crohns and/or UC!

 

[Arin B]

Thanks so much for all your perspectives!! This gives me some hope for a diagnosis and to know that I'm not (probably) going crazy. I see a new GI/Immune Specialist on Tuesday, will keep you all posted!

 

[Crohn's 35]

Congrats, and Welcome, hope you get some answers and some relief!

 

[Cog]

Also talk to your doctor about colestipol - excess bile acids can cause a lot of the big d too good luck

 

[imisspopcorn]

Another little story (to be taken at face value): When I first started having symptoms and had no GP, I picked a random doc from the internet. He turned out to be this like 80 year old guy and a bit of a quack, but something that he said sticks out in my head. I was having constant (20+) episodes of D per day and he asked me if I ever wake up in the middle of the night with D. I told him I did, and he said (matter of factly), "then you have colitis in your colon, because you will not wake up at night with IBS".

The only reason I mention this is because this guy was old and may be resorting back to the days when modern means of diagnosis weren't available. Bottom line is, he was (almost) right.

That is in one of my old nursing text books as well...Funny thing is, there was less than 1 whole page devoted to IBD back in the late 80's early 90's. Now maybe there is 3 pages...Things are improving