Strange Symptoms?

[xtine]

I really need help.. I really don't know what to do next. I am in a catch 22 with my GI Dr. he wants me on meds and i want to make sure this is what i have.. i was wondering if my story or symptoms sound familiar with anyone else??

I was diagnosed back in May and it was quite unexpected as I wasn't having major symptoms for long.. they did find a small ulcer in the TI which they biopsied.. they said it was inflammation but didn't quite conclude it was CD until I saw the gastro. He is 'certain' that I have mild CD- I however am not totally convinced.

First- I get no D. I do have constipation quite regularly.. I was told that it's possible to have this with CD.. I also have some mucus in my BM now and then.. another clue something is abnormal. Besides constipation, sometimes I just find it difficult to push out a BM. I really strain.. it almost feels like something is blocked.. i can't figure out what is going on.. when i take a softener, it improves so maybe it's just CD??

Second- I have SI joint pains, lower (lumber) back pains, plus my hip muscles or ligaments really ache. I am not sure how much of this can be CD. When my lower back hurts- it practically burns.. i can feel the warmth when i touch it. If i lean on anything too long it hurts and is sensitive. I guess this is a clue it's inflammation but is this CD??

3rd- i get a low grade fever always before my period.. it takes a few days for me to feel normal again... aches and pains seem to be worse during my period and the warm/painful back usually hits me after.. it seems to all fit into a cycle.. but not any stomach issues.

last- i have had some stomach pains on and off.. sometimes i get gassy.. sometimes i have some pains around my stomach upper and lower areas. i get reflux on and off.. but i never get pains that last too long or occur directly after eating. i gave up gluten and am really watching what i eat.. but if i have CD i was expecting more stomach issues.

the only thing i can think is that i have a mild case of CD that causes constipation and also arthritis- it just seems like there is more than one thing going on..

also a couple of other things that are going on which i can understand at all are:

the hair on my head is thinning... it's looking pretty noticeable and it's freaking me out

my iron is low- but has been for 5 years and i have been supplementing for 5 years on and off.. i usually know what symptoms are brought about with my low iron and hair loss has never happened to this degree

i bruise easily

my muscles ache if i use them a lot

fatigue

occasionally ( maybe 3 times in the last year) i have lost my appetite and have felt 'sick'

i have a constant pain in the right side of my buttocks along with tailbone pain.. this is the reason i got the colonscopy in the first place. it hasn't improved.. it hasn't gotten worse.. but i am worried there is something like a tumor in there.. they did give me a pelvic xray a while ago.. but could something be missed?? does anyone have pains like these?

i'm sorry if i missed something.. i'm very tired today but wanted to get this message out... i'm so confused by my symptoms and never expected to have such bad aches and pains.. if anyone can relate please let me know.

regards,
chrissy

 

[Trysha]

Hi Xtine
I can relate to your description.
My Crohn"s is in the sigmoid area, now proven with two colonoscopies, one sigmoidoscopy,virtual colonoscopy, several ultrasounds multitudes of repeated blood tests, barium enema
and two CAT scans.Inflammatory markers gave high results ie ESR and CRP. Events have not been straightforward for me due to co existing diverticular disease.
Initially, three years ago I had much diarrhoea and bleeding which responded to cortifoam.Over the years this has been the extent of treatment, since I reacted to imuran, and until now refused any other treatment.The course of events has never been straightforward.
Currently I have had a lot of pain, tendency now is towards constipation and the GI insists I need Remicade treatment, and I have agreed very reluctantly to this.
I have never believed it was Crohn's but it is staring me in the face with the biopsies and
it could be getting worse corroding my insides while I do nothing except the cortifoam. This steroid cannot be continued forever since there is a small uptake into the system with it..
I get lots of abdominal pains and joint aches and pains also., lots of fatigue at times.
The diagnosis is hard to believe and accept but in the end we have to follow the advice of experienced GI specialists.
I fully understand your feelings---been there---done that----
Feel better soon
Hugs and Best Wishes
Trysha

 

[Farmwife]

You sound close to what my three yr. old has.
She also has constipation.
I hope you get answers.

 

[xtine]

Hi Xtine
I can relate to your description.
My Crohn"s is in the sigmoid area, now proven with two colonoscopies, one sigmoidoscopy,virtual colonoscopy, several ultrasounds multitudes of repeated blood tests, barium enema
and two CAT scans.Inflammatory markers gave high results ie ESR and CRP. Events have not been straightforward for me due to co existing diverticular disease.
Initially, three years ago I had much diarrhoea and bleeding which responded to cortifoam.Over the years this has been the extent of treatment, since I reacted to imuran, and until now refused any other treatment.The course of events has never been straightforward.
Currently I have had a lot of pain, tendency now is towards constipation and the GI insists I need Remicade treatment, and I have agreed very reluctantly to this.
I have never believed it was Crohn's but it is staring me in the face with the biopsies and
it could be getting worse corroding my insides while I do nothing except the cortifoam. This steroid cannot be continued forever since there is a small uptake into the system with it..
I get lots of abdominal pains and joint aches and pains also., lots of fatigue at times.
The diagnosis is hard to believe and accept but in the end we have to follow the advice of experienced GI specialists.
I fully understand your feelings---been there---done that----
Feel better soon
Hugs and Best Wishes
Trysha

Thanks for your help trysha!

this is what confuses me- i never had a history of D or bleeding.. i have never had any history of any digestive issues.

i do worry that this is corroding inside of me too.. but how to tell? i don't feel anything is wrong.. expect for the pains i get around my hips/back. hardly any abdominal pains... i think my hubby who isn't diagnosed with anything has more issues than me..

i dunno..i just feel that this is the first thing they looked at and the first thing that came up... nothing else has been looked at (except blood tests) and i just don't know if they have it right. or if they're overlooking something. my only option is to try the meds to see if that helps.. but then they can just keep trying meds on me to try to diagnose that way.

 

[xtine]

You sound close to what my three yr. old has.
She also has constipation.
I hope you get answers.

so sorry to hear about your 3 yr old. it's not fair that someone so young should have to deal with this. is there a family history of CD? I don't know of anyone in my family with it. I have 3 kids and I'm worried that they might develop this in the future... not sure how to stop it from happening but i just want to keep them eating healthy and cut junk/sugar etc. it's hard because my oldest has big eating issues and is very picky. he'd rather starve than eat certain foods so i have to feed him less than idea foods to keep him going.

is your daughter on any meds? do they help? how did they diagnosed CD in her?

 

[Farmwife]

She's still undiagnosed. She's been this way for so long, it wasn't till 9 mo. ago we were pointed the IBD direction.
But we're getting close to one. We hope.
She's on loads of v-mins and some stomach meds.
We've tried diet changes for her but nothing help in the long term yet.

 

[karj]

Hi Xtine
Yes I can relate to a lot of your symptoms too. I have was diagnosed with CD in the small bowel but that settled, but it moved to sigmoid colon and rectum. My iron is also low and i am pretty run down at the moment. I also get back joint pain in my fingers, and bad lower back pain. i also bruise very easily. Crohn's just seems to have so many other things that it can cause i often think the doctors can put practically everything we get down to it somehow!

 

[xtine]

I read about Mastocytic enterocolitis and from what i can tell my symptoms fit more with that. i am putting together the pieces but i believe that estrogen dominance might be contributing to a histamine intolerance. going on a low histamine diet might help my symptoms. i'm still researching but just to let you all know in case any of this can help you. it might be worth getting your hormones tested as well.

 

[lola99]

I would say that you should get more testing to determine wether you have crohns disease. Like deep biopsies of your colon,small bowel series,egd,blood test. When i first starting having symptoms i didn't have diarrhea at all. I was actually having a hard time going the bathroom and got fissures as a result. I didn't have pain or anything that would say "crohns". I did however suffer from gerd. Over the years it went away and came back. Even when i got a blockage and at my worst i didn't get diarrhea ( i did get more frequent softer bowel movements) and i always had mucus. I didn't get any joint pain until i was in full flare and that passed when i got on meds. My hair starting falling out during my flare too. Never had any low grade fevers even though that is a typical crohns symptoms. I think with everyone their symptoms vary and its just best to find a doctor that is willing to do all the appropriate testing to determine your condition.

 

[annawato]

Hi chrissy, sorry to hear about your problems. I have severe crohn's and I can identify with a lot of your symptoms the only difference is that I do get a lot of stomach pain during flares. Diahorrea was never a problem for me (i was always constipated too) until they removed so much of my bowel that i don't absorb liquids properly. I get joint and muscle pain and all my symptoms are worse pre menstrually which I believe is quite common. I always lose hair during bad flare ups too.I think cos I'm not getting enough nutritionally. Fatigue, tiredness are all just part of it. So a lot is similar to what you describe. The SI pain you mentioned - is that sacro iliac? cos that is caused by crohn's too. i guess you just have to trust what the doctors say and go from there - see if any of the meds help and if you are still unsure get some follow up testing as lola suggested. the pain in your right buttock and tailbone sounds like sciatica - there are some exercises you can do to stretch the muscles in the buttock that would help, a physiotherapist should be able to help here. Good luck with everything and take care,

 

[Farmwife]

Hi, remember in order to dx ME they have to take biopsy anyway, then they have to stain the biopsies to see what they need to see. Meaning if you have crohns or UC they'll be able to tell. right away. Some medical professions are theorizing that ME is a stepping stone to full blown Crohns or UC. In the case of my daughter she still hasn't been scoped because the GI thinks because her labs are normal we still have "time". Well now our GP is starting to push way more for answers including getting a second opinion. He also is studying ME and think this is a very REAL possibilities.
If you wish for more info on ME I have some medical papers for your doctor and you to view. Just PM if you want.

 

[bittsybug]

I can relate to alot of ur symptoms,,,i was recently Dx with Mastocytic Entercolitis,,,and ive been sick for 3 months, lost 20 lbs,, been to the ER 2x,, had fever almost every day(low grade) and burnin in my back extremely,, was backed up , then had D for 2 months,,, the longer the days goes on,,the worse i feel,,hurtin in my R shoulder,,,all the way to my hip,,,hi blood pressure, heart racing,,(both) ,toe joint pain,,and no sleepin ,

I really need help.. I really don't know what to do next. I am in a catch 22 with my GI Dr. he wants me on meds and i want to make sure this is what i have.. i was wondering if my story or symptoms sound familiar with anyone else??

I was diagnosed back in May and it was quite unexpected as I wasn't having major symptoms for long.. they did find a small ulcer in the TI which they biopsied.. they said it was inflammation but didn't quite conclude it was CD until I saw the gastro. He is 'certain' that I have mild CD- I however am not totally convinced.

First- I get no D. I do have constipation quite regularly.. I was told that it's possible to have this with CD.. I also have some mucus in my BM now and then.. another clue something is abnormal. Besides constipation, sometimes I just find it difficult to push out a BM. I really strain.. it almost feels like something is blocked.. i can't figure out what is going on.. when i take a softener, it improves so maybe it's just CD??

Second- I have SI joint pains, lower (lumber) back pains, plus my hip muscles or ligaments really ache. I am not sure how much of this can be CD. When my lower back hurts- it practically burns.. i can feel the warmth when i touch it. If i lean on anything too long it hurts and is sensitive. I guess this is a clue it's inflammation but is this CD??

3rd- i get a low grade fever always before my period.. it takes a few days for me to feel normal again... aches and pains seem to be worse during my period and the warm/painful back usually hits me after.. it seems to all fit into a cycle.. but not any stomach issues.

last- i have had some stomach pains on and off.. sometimes i get gassy.. sometimes i have some pains around my stomach upper and lower areas. i get reflux on and off.. but i never get pains that last too long or occur directly after eating. i gave up gluten and am really watching what i eat.. but if i have CD i was expecting more stomach issues.

the only thing i can think is that i have a mild case of CD that causes constipation and also arthritis- it just seems like there is more than one thing going on..

also a couple of other things that are going on which i can understand at all are:

the hair on my head is thinning... it's looking pretty noticeable and it's freaking me out

my iron is low- but has been for 5 years and i have been supplementing for 5 years on and off.. i usually know what symptoms are brought about with my low iron and hair loss has never happened to this degree

i bruise easily

my muscles ache if i use them a lot

fatigue

occasionally ( maybe 3 times in the last year) i have lost my appetite and have felt 'sick'

i have a constant pain in the right side of my buttocks along with tailbone pain.. this is the reason i got the colonscopy in the first place. it hasn't improved.. it hasn't gotten worse.. but i am worried there is something like a tumor in there.. they did give me a pelvic xray a while ago.. but could something be missed?? does anyone have pains like these?

i'm sorry if i missed something.. i'm very tired today but wanted to get this message out... i'm so confused by my symptoms and never expected to have such bad aches and pains.. if anyone can relate please let me know.

regards,
chrissy