Hi it's 2 years since my first resection(dsx oct 2012 resection march 2013 2 feet removed )was on humira for 9 months but then had an allergic reaction so have been on simponi for the last 9 months and 1 3mg if entocort a day,also have AS, asthma and high bp I'm 46. Over the last 2 years I've had 6 pillcams(part of a study here in IReland)inflammation always seen at site of the resection. With last pillcam(april2015)things are strange and ibd nurse more cautious speaking to me and will jst say doc will discuss what they r going to do with me.Have an app later this month, since oct of last year I've been complaining of left side pain thought it was a gyny problem but had a d&c and hysteroscopy and all was good. Pain still there though and worse now, recent bloods show I'm anemic(never see blood cos of the D(have B12 injections quarterly and folic acid daily)now I've constant gurgling and pain on left side and most recently( for the last week) soreness below belly button sometimes extreme, any ideas anyone as to what might b happening? Sorry about going on and on P.S believe I've had crohns for 20+years but was misdiagnosed with ibs
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What Might be Causing this Lower Left Abdominal Pain?
- Thread starter Toni68
- Start date
- Location
- London, UK
Never worry about giving us lots of details or asking questions! That's what the forum is here for! 
It's always tricky to say what is causing pain in a particular location or a particular type of pain or symptoms because there can be multiple causes. I know it's frustrating and I think a lot of us look for there to be a one to one correspondence between symptoms or pain location and potential causes because we so desperately want information but in my experience it rarely works like that That being said it could be that you have a stricture but I would try to hold off on any judgements until you've spoken to your doctor.
Please do let us know what your doctor says! I hope they have a good treatment plan for you.
The pill cam study sounds very interesting and useful to have all that information about your disease activity but did you feel like that knowledge that there was inflammation seen at the site of resection each time was being used well by your doctors to adjust or escalate your treatment?
Best of luck
It's always tricky to say what is causing pain in a particular location or a particular type of pain or symptoms because there can be multiple causes. I know it's frustrating and I think a lot of us look for there to be a one to one correspondence between symptoms or pain location and potential causes because we so desperately want information but in my experience it rarely works like that
That being said it could be that you have a stricture but I would try to hold off on any judgements until you've spoken to your doctor.Please do let us know what your doctor says! I hope they have a good treatment plan for you.
The pill cam study sounds very interesting and useful to have all that information about your disease activity but did you feel like that knowledge that there was inflammation seen at the site of resection each time was being used well by your doctors to adjust or escalate your treatment?
Best of luck
No not really ... To start with they never seem to have the uptodate pillcam result in front of them but because the study is actually in another hospital the doc who is running it ALWAYS rings me personally and tells me how it went and I usually relay the findings to my consultant. What Reealy annoys me is their dependence on blood findings which I've wrote about in another topic. My bloods are nearly always normal even before my emergency resection when instead if needing 6 inches removed they actually needed to take 24 cos it was such a mess ie abscesses,ulcers bowel perforation etc.
- Location
- London, UK
That's such a shame that it doesn't all come together to give you a well informed treatment plan. I mean having frequent imaging and all the information about what's actually going on inside is what we all want isn't it? But you need to have doctors who look at the results, interpret them sensibly and make decisions accordingly.
It's definitely not good that your doctor doesn't show awareness that your disease activity is not reflected by inflammatory markers in your blood. It sounds like that's been clearly established to be the case for you so it's very dismaying that your doctor's ignoring that.
What does your doctor say when you point out that normal bloods don't reflect a lack of disease activity for you?
It's definitely not good that your doctor doesn't show awareness that your disease activity is not reflected by inflammatory markers in your blood. It sounds like that's been clearly established to be the case for you so it's very dismaying that your doctor's ignoring that.
What does your doctor say when you point out that normal bloods don't reflect a lack of disease activity for you?
Well last oct 2014 ( my last visit with him) I told him of my fatigue and llq pain and again he referred to bloods and in his opinion I was fine and in remission and suggested it was a gyny prob.I was supposed to have my next visit in January but that was put back to June 23 so that'll b 8 months between visits? Crazy in my opinion.My consultant ,to me, is just very arrogant , doesn't listen and is VERY dismissive having said that my IBD nurse is a god send and always at the end of the phone or rings me back ASAP .i know probs sounds terrible but can't wait to see what he has to say about latest pillcam but I know he'll probs say I'm in some way contributing to what's happening.ill keep you updated
- Location
- London, UK
Is there any possibility of you seeing a different consultant?
Sorry haven't been here for awhile,well the latest news is I've crohns ilieitis and crohns coilitis.A new doc was in when I went yesterday and he said from the endoscopy result he could see its spread more into the colon I asked how could that be and HE said poor medical maintance ie what I'm on which is 3 mg of entocort a day and folic acid and 50 mg of Simpsoni once a month. Again although the crohns is active inflammation markers aren't raised but I am anemic as well, tried ferrigrad c but made d worse.Had to do more bloods today and a fecal sample, now i seem to be having a period as well even though I'm not due them for another 2 weeks grrr!just waiting for those results now..... Just wondering although I was only diagnosed 2012 and believe I had it for years because for as long as I've known I've had abscesses down below and rectal skintags so does that mean the crohns started in the colon does anyone know? Thanks
Hi just an update..... Going to start 50 mg of simponi twice a month to try and get inflammation under control NO explanation of left side pain,no colonoscopy requested, fecal sample and blood only tested for infection which were both negative, asked if calprotectin was done and they said no?for the anemia they said might give me one infusion ( can't tolerate oral iron) but wasn't ordered.... Oooh I don't know feel like a hypocondrac at this stage.... Hopefully the upping of simponi will do the trick and bloods in August will show a marked improvment