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A typical Crohn's??

I just wanted to post my story from the beginning to see if anyone can relate to it and identify with the symptoms I'm experiencing... I still am not sure about my CD diagnosis and would love to hear everyone's opinions.

2 years ago

i discovered i had gallstones and developed a gall attack after eating some chips

i changed my diet and managed to keep the gallstone attacks to a minimum

1.5 years ago

i began experiencing pain in my sides and SI joints- the pain was a stiffness felt in the AM usually after a long day of exercise and walking so it seemed to be inflammation.. i just had a baby and was carrying her around on my hips so i felt this somehow contributed to the pain.


1 year ago

i developed some pains in my upper stomach.. just under the breasts. i went through several days of feeling sore, nauseous and unable to eat. i suspected it was a more intense gallstone attack or an ulcer. the pain eventually subsided and things went back to normal. i think i experienced this again another time but more mild the second time.

i did noticed that every now and then i'd get a stabbing stomach pain in the upper GI after eating... especially if i bent over.

i also noticed that usually before i caught a virus my left nostril would flare up in pain and feel sore for a day or two... this still comes and goes.

i also noticed that my eyes would feel clouded with discharge in the AM as well as my eyelids seemed to be inflamed and purple... this comes and goes still

6 months ago

i noticed my infrequent bowel movements worsened and i had pretty bad constipation. it felt difficult to pass a BM and when I did there was some bleeding from hemorrhoids.

I cut back on my iron supplements thinking it was contributing to my constipation and when i did i noticed my BM were more regular. they didn't really feel too normal tho-- i was more regular and they were formed but it just felt that on occasion i had a bit more of an urgency to go. also, when i did go i didn't feel finished. these symptoms lasted a few weeks as i tired to get my hemorrhoids under control .. i felt that this might have been contributing to the having to go feeling.

at this time, i also developed some pain around my tailbone area and a feeling of a pulled ligament just to the right of my anus in my buttocks.

i also felt that i was gassy more than usual.

with all the strange changes of my BM's and the pain i requested a colonscopy. that is when they discovered inflammation of the TI and did a biopsy. it came back positive for inflammation which the dr. who did the colonscopy says was crohn's. she referred me to a GI specialist but in the meantime wanted to put me on meds. she said it looked to be mild and her opinion, the possibility of the start of crohn's.

over the last few months

i have noticed some digestion issues like GERD and constipation.. even if I drink prune juice it eventually comes but seems that my BM gets held back somewhere. I have near constant pain around my SI joints, flanks etc.. it seems some aches and pains float around my body. I now have a constant pain on my left side, lower ribs and it hurts to touch. ( i'm getting it scanned tomorrow.)

over the last 2 months

i have had mild fevers as well as frequent phlem in my throat. i had a uti infection and a burst cyst. i do feel pains now and then in the lower areas of my stomach/ovaries but it's hard what/if anything sets it off. most of my pains feel more constant and have worsened over the last few months.

i am just wondering how soon CD can set it. before my gallbladder attack i had no GI symptoms what so ever.. never did expect for infrequent BMs. i gave up gluten and that really helped with my pain... i am still at a loss tho.. i am not sure if this is CD. when i asked my GI dr. about it, he said the inflammation in my TI could also indicated lymphomia.. that freaks me out.. but my blood tests came back normal expect for slightly elevated inflammation.

now it's safe to say i have anxiety from all the strange symptoms that are going on with my body. my fever has been constant all weekend- i'm not sure if i'm fighting something off or if it's related to what i have. i feel attacks of inflammation in my eyes and joints but it doesn't really relate to any D. last night i had a burning sensation all in my upper GI which felt very odd- almost like an infection - didn't feel like GERD. i also developed sores in my mouth when this happened but they were gone the next day.

also i have noticed i'm bruising easily and my hair is falling out faster.. i have low iron but it's been lower before plus i don't have any other low iron symptoms like heart palpitations which i normally get if it drops low.

anywho- i am just wondering if this sounds like your experience with CD. I know something is going on but I just can't tell what. it seems pretty intense at times and is slowly worsening... if it is CD I plan on treating it with meds.. i see my dr. again in 2 weeks and will discuss with him.. i the meantime, i need someone to tell me to calm down and relax.. i'm afraid of getting terminally ill and leaving behind my family.
 
Welcome to the forum and so sorry that you are going through all of this. There are sure to be many by with advice and experience for you. When you had your colonoscopu and they took biopsies did they tell you that they found granulomas or you tested CD positive. When my son's terminal ileum was biopsied, the GI said it was being sent off for biopsy and he was fairly certain we were dealing with CD but the biopsy would rule out lymphoma and other infections. So when the biopsy came back it confirmed CD.
Fever is common among IBD's when they are flaring, my son kept one at night on and off for months before he was diagnosed. My son's CD located in his TI and tends towards constipation, although he has become more regular and loose with medications. My son also had anemia and he was bruising fairly easily at onset. As for the hair loss I might suggest at your next appointment you see about getting your vitamin levels checked, D, b12 maybe folate. I know hair loss can be due to vitamin deficiency. Also, IBD'ers can have malabsorbtion issues so checking your vitamin levels can't hurt in general.

The other things you are experiencing can be extraintestinal manifestations of IBD and are common among those with CD/UC. Of course, it varies greatly with each individual but many on here have ocular issues, skin issues, joint pain associated with their IBD.
This can all be a bit overwhelming and there are many wonderful people here to support you through this CD journey.I'm no expert at this and someone else may be able to answer this question but when my son was biopsied and it came back CD(presumably there were granulomas present) so automatically lymphoma was thrown out. So I'm not sure why if your biopsies have come back and they have said CD, that lymphoma would still be in the picture. Any concerns, fears or questions you may have you should write down and have your doctor go over them with you until you feel comfortable that he has explained everything to your satisfaction. That may help some with the anxiety.
 
I've ALWAYS had GI issues and have been under the care of a gastroenterologist since I was 18 months old, but whenever I had my gallbladder removed when I was 13, all hell broke loose and the moderate discomfort/pain I had turned into a WHOLE other level of pain of what I now know as Crohn's Disease and Junior Rhuematoid Arthritis. Apparently my gallbladder caused sepsis and a outpatient surgery turned into a week stay at the hospital.

I can't tell you if your pain is simmilar to my pain because everyone experiances pain differently. All I know is, there is pain, there is gallbladder pain and then there is CROHN'S. Crohn's is rarely fatal so I honestly would not be worried about that. People can deal with the painful symptoms of Crohn's for YEARS before getting a diagnosis and still be 'fine'. With that being said, I can understand your frustration and would talk to the GI about running a few tests such as CRP, Sed rate, a stool test to check for Cdiff/occult blood, CT, Xray & most importantly, a HIDA scan. The HIDA scan will show if your bile ducts are causing your issues. It is very common for the bile ducts to still be inflamed after removal of the gallbladder and that can cause horrid pain, D, and malabsorption known as bile salt diarrhea.

Having GI issues is very common after GB surgery and my case was a bit atypical. I don't know if you have Crohn's because I'm not a doctor but it sounds like the pain you are describing is bililary pain. Did you know it is also possible to still have stones after GB removal? The stones can scrape against your intestines and cause pain anywhere from your small intestine down. It can even cause bloody bowel movements.

Look into Habba Syndrome. It commonly affects people with a cruddy gallbladder or those who have just had it removed. The malabsoprtion from bile salt diarrhea can also cause fatigue, hair loss, brittle nails etc.

http://habbasyndrome.com/_wsn/page2.html
 
Thank You both- I am going to call where I got my scope and ask about the biopsy.. i never thought of that. In fact, I don't even know if my GI got all the results.. he didn't when I saw him.. so he's only working with 1/2 a picture. All i was told was that it showed active inflammation.. but doctors tend to try to dumb things down.. i should have asked the proper questions and done some research before. Thank You so much Clash!! this could really help with my anxiety levels.

Also, KeepingFaith.. thank you so much for coming to my rescue again!! I should mention I never had my gallbladder removed.. it stopped bothering me.. but now I'm thinking I should get it tested or something... maybe it was dumb but i thought i could dissolve the stones naturally.. i doubt i have.. i better get another scan and think about removal.. maybe that is causing me some issues. Sepsis certainly scares me... I saw it infect my father as he was in a coma fighting it for several weeks-- it was after being air lifted from west africa after a surgery gone bad. It was close but thank God he made it... I would never want to put myself or my kids thought that again.

Either way, I'm reminded that my issues do matter and that I still need to be my own advocate and talk to these doctors further. sometimes, it's difficult for me to question them but i'm once again reminded that i need to ask more questions.. even if it's as the risk of seeming annoying.

Chrissy
 
I find it really interesting reading your story as I have frequently had hip pain at times etc and have never put it down to Crohn's but now I am rethinking it... Like you I have never had a lot of D and I seem to be sick with colds or fevers pretty constantly. I also get a weird rash that I am thinking maybe down to the crohn's as well. There are so many symptoms and its really hard to tell what's what. Totally understand where you are coming from!!!!
 
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