Not sure if I am posting in the right place but.... it seems most everyone on this forum suffering from Crohn's deals with quite a bit of pain. I have never had this issue. Mine is constant bleeding (which scared me to death initially). Was diagnosed using one of those crazy amazing swallowed cameras. Have been on humira for about 2 years and it seems to stop the bleeding within hours and I don't have the issue again until about 3 days before my next injection (2 weeks apart). Doc is ordering the Prometheus test (I think that's the spelling). Other than weight loss when off Humira (and weight gain when on) and a constant B12 anemia and D efficiency I really have no other symptoms. Anyone in the same boat? Just trying to ensure I'm not killing a mosquito with a hammer.
Crohn's without the pain
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scottsma
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Hello and welcome.We're all different,in symptoms,diagnosis and treatment.I only have pain in my stomach when going to the loo,otherwise it's always chronic lower back ache.
I expect there will be others along soon who have similar symptoms to you and of course there are many,many more who spend their lives in constant pain.I will just say though,don't be too complacent.This damned disease has a habit of creeping up on you.:shifty:
I expect there will be others along soon who have similar symptoms to you and of course there are many,many more who spend their lives in constant pain.I will just say though,don't be too complacent.This damned disease has a habit of creeping up on you.:shifty:
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I can only agree with Scottsma there. I never suffered any pain when I was diagnosed because I could barely eat, and all I had was pretty much potatoes in one form or another, and cheese strings/babybels.
Now I'm on treatment and trying to be better at eating a varied diet, I do get fairly substantial cramps. However, my diagnoses was delayed massively because I never get diarrhoea so they never thought to investigate the bowel at first. Funnily enough I had severe Crohn's in the ileum, duodenum and caecum and to this day I still don't get diarrhoea....ever!
Stupid disease!!
Now I'm on treatment and trying to be better at eating a varied diet, I do get fairly substantial cramps. However, my diagnoses was delayed massively because I never get diarrhoea so they never thought to investigate the bowel at first. Funnily enough I had severe Crohn's in the ileum, duodenum and caecum and to this day I still don't get diarrhoea....ever!
Stupid disease!!
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To give you a bit more insight I only have deficiencies, weight loss and ridiculous fatigue. It's only since I've been diagnosed I get pain which thankfully passes pretty quickly, and some bleeding but not a lot. If they didn't have biopsies from each end on different dates confirming Crohn's I'm not sure I would have believed it myself [emoji15]
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My son started with pain, night fevers, and severe fatigue before dx. There wasn't blood seen in his stool nor did he have D. In fact, his bms were once a day or every other day. The pain and fatigue kept him in bed and not able to function.
After dx he was started on remicade. Within the day, all of his symptoms abated. It has been this way since then even though he has been through several meds (remicade, remicade + methotrexate, humira + methotrexate and now stelara + methotrexate) and surgery. None of the meds so far have been able to bring about remission. The disease is still quite active yet he is asymptomatic.
He recently experienced nausea, fatigue and vomiting. I figured he was experiencing flare symptoms. The GI felt since he had surgery to remove part of the terminal ileum, the IC valve and a bit of his large bowel bacteria and/or bIle was coming into the small bowel at the point of the missing IC valve. He placed him on a month of cipro and questran which seems to have worked. So, maybe he's still asymptomatic as far as active inflammation symptoms or maybe not only time will tell.
When he was on humira and tests(scopes and imaging) showed it wasnt reigning in the inflammation he was moved to weekly doses. Maybe this is an option your GI could implement to stop the bleeding between doses.
After dx he was started on remicade. Within the day, all of his symptoms abated. It has been this way since then even though he has been through several meds (remicade, remicade + methotrexate, humira + methotrexate and now stelara + methotrexate) and surgery. None of the meds so far have been able to bring about remission. The disease is still quite active yet he is asymptomatic.
He recently experienced nausea, fatigue and vomiting. I figured he was experiencing flare symptoms. The GI felt since he had surgery to remove part of the terminal ileum, the IC valve and a bit of his large bowel bacteria and/or bIle was coming into the small bowel at the point of the missing IC valve. He placed him on a month of cipro and questran which seems to have worked. So, maybe he's still asymptomatic as far as active inflammation symptoms or maybe not only time will tell.
When he was on humira and tests(scopes and imaging) showed it wasnt reigning in the inflammation he was moved to weekly doses. Maybe this is an option your GI could implement to stop the bleeding between doses.
My symptoms don't often involve pain, and almost never any bad pain, but bleeding is a problem. I still find it terrifying! My understanding is that if your disease is lower down, ie in the colon, then pain often isn't a big issue but bleeding and diarrhoea are, but if it's in the small bowel higher up, pain can be very severe. Lack of pain doesn't mean the disease isn't serious, unfortunately. Bleeding can lead to a lot of trouble.
Thanks so much for the reply. On the lower vs upper GI thing, is that something your doc said or something you might have a source for? I can't find anything using everyone's favorite physician - Dr. Google
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You're right there, I'm on here all the time asking silly questions lol. Sometimes it's best to speak to others in the same boat rather than doctors/nurses who are very knowledgable but can't actually relate to the toll it takes.
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Thanks so much for the reply. On the lower vs upper GI thing, is that something your doc said or something you might have a source for? I can't find anything using everyone's favorite physician - Dr. Google
I would be interested in that too, even if it's anecdotal. My GP has never been able to understand why I wasn't in pain around the time I was diagnosed. It's only since I've been on here and got some insights from fellow sufferers I know I'm not the only one!
The thing about Crohns in the ileum generally being more painful than Crohns in the colon is something I've read on the internet in what I think are reputable sources. On Healthline.com, Crohns Disease, symptoms to look out for, it says that disease in the ileum can be extremely painful. I've definitely seen more detail elsewhere, but can't find it this minute. There are differences between the two types of Crohns, I'm sure that's an established fact, like you're more likely to have severe constipation if it's in the ileum and diarrhoea if it's in the colon (though there's overlap and many people have the disease in both areas). Hope someone will correct me if I'm mistaken!
I'm really interested in this. Colonoscopy found nothing (I assume that would cover Crohn's in the colon) but camera found extensive issues in small intestine. But I have bright red blood. I mean ridiculous amounts (in my opinion). My research (term used lightly here) is that small intestine issues should cause dark blood. Doc does not seem nearly as concerned as patient (that would be me).
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This is a helpful post. One child with Crohn's and other genetic conditions - who had many GI symptoms / pain that really reduced ability to have quality of life but blood and stool tests always showed normal. Really needed the colonoscopy and capsule endoscopy to confirm it - which both did.
However, I have another child who hasn't had GI issues in a few years, but has mystery illness and many symptoms /tests results that could be Crohn's (fatigue, some vitamin absorption issues, growth) and we just have several vague diagnoses. After one child was diagnosed with Crohn's, Doctors say Crohn's is a possibility. I haven't taken him to a GI specialist yet - and if I do, wondering how much to push for capsule endoscopy or colonoscopy.
(Other children, show GI issues - just not at the level of Crohn's and seems to be manageable with diet).
However, I have another child who hasn't had GI issues in a few years, but has mystery illness and many symptoms /tests results that could be Crohn's (fatigue, some vitamin absorption issues, growth) and we just have several vague diagnoses. After one child was diagnosed with Crohn's, Doctors say Crohn's is a possibility. I haven't taken him to a GI specialist yet - and if I do, wondering how much to push for capsule endoscopy or colonoscopy.
(Other children, show GI issues - just not at the level of Crohn's and seems to be manageable with diet).
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scottsma
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I don't know if you've noticed but we have a "Parents of children with Crohns"thread that you might find a great help.
Nope - been checked for that many many times.
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How strange! Bright red blood would seem to suggest inflammation lower down in the tract. Let us know if you get to the bottom of it (sorry no pun intended!)
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My experience is the real bad pain comes when I have obstructions. My Crohns is at the Terminal ileum, so in both the small intestine and the Colon, but mostly in the Small Intestine. I have not had the really bad, severe pain since I had my surgery in 2010. But my disease has not been silent. I had some lower right quadrant pain recently and a colonoscopy found an ulcer at my surgery site. The Ulcer appears to be Crohn's related. My GI found the Humira was not at therapeutic levels and switched me to weekly injections. Since then the lower right pain has subsided.
We are all different. Don't back off because you are not in pain. This disease can cause significant damage without being painful.
