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This can happen if the Crohn’s is in the small bowel.
thank you for your comment
two CT have shown largish lymph nodes and a lot of them - apparently not what they would expevt to see thereYup! They will probably do a capsule endoscopy now.
Just wondering has anyone refused to go on to steroids? Is there an alternative? I have UC diagnosed in March currently in flare (since last november) and still waiting to see the consultant. They have given me mesalazine but it's not changed anything. I'm already on a corticosteroid for a different illness and I really don't want more. I don't think I could handle it.
Hope no one minds me dropping in on this!
So I was referred to a lower GI doctor on the NHS by my GP after I kept going to the doctors with stomach complaints and episodes of going to the loo a LOT! (At its worst, I went 36 times in a 24 hour period). This has happened 3 times at that amount in the past year. Awful tummy pain, extremely tender to press on stomach, violent cramps and a constant gnawing pain griping my whole abdomen area. Handful of occasions I’ve had lots of bright red blood too, like, lots!
Anyway, I have my first (telephone) appointment with this GI doctor which lasted 1 minute at 56 seconds. He wasn’t interested, just gave it all “yep yep ok yep ok I’ll do blood and stool tests”. So I had the tests and he called me last night with the results and that call lasted 2 minutes and 13 seconds; “results all fine, sounds like IBS, I’ll refer you to a dietician”. And that was that. Off his list. After 2 phone calls. He didn’t even want to physically see me to examine me when I explained how tender my tummy area is. Absolute bloody waste of my time.
What amazes me is that he also does private work. So I bet he’d show me a lot more interest if I was paying £220 consultation fee to get in front of him!!
Im just so fed up with this now. I cannot find a trigger for these pains and upset stomach/blood and I’ve just been what feels like abandoned by doctors.
So I was referred to a lower GI doctor on the NHS by my GP after I kept going to the doctors with stomach complaints and episodes of going to the loo a LOT! (At its worst, I went 36 times in a 24 hour period). This has happened 3 times at that amount in the past year. Awful tummy pain, extremely tender to press on stomach, violent cramps and a constant gnawing pain griping my whole abdomen area. Handful of occasions I’ve had lots of bright red blood too, like, lots!
Anyway, I have my first (telephone) appointment with this GI doctor which lasted 1 minute at 56 seconds. He wasn’t interested, just gave it all “yep yep ok yep ok I’ll do blood and stool tests”. So I had the tests and he called me last night with the results and that call lasted 2 minutes and 13 seconds; “results all fine, sounds like IBS, I’ll refer you to a dietician”. And that was that. Off his list. After 2 phone calls. He didn’t even want to physically see me to examine me when I explained how tender my tummy area is. Absolute bloody waste of my time.
What amazes me is that he also does private work. So I bet he’d show me a lot more interest if I was paying £220 consultation fee to get in front of him!!
Im just so fed up with this now. I cannot find a trigger for these pains and upset stomach/blood and I’ve just been what feels like abandoned by doctors.
If it's the side effects of oral steroids that are the problem, you could perhaps have a long acting depot shot instead?
Sorry to hear your going through this. It sounds exactly like the situation my partner is currently going through with the same symptoms. The drs just aren’t interested and we cant afford private.
Unfortunately this story is so common with IBD. I know it puts you in a tit position but you've got to turn into abit of an hole to get anything done. Turn up to hospital every time you're in a flare. Don't accept no. Make a huge fuss.
Unfortunately they don't tend to do tit until its too late and you're sitting on that operating table.
This is what I was thinking, but I’m on my own 99% of the time with a toddler. It’s just not practical to go to A&E. Im just fed up. I shouldn’t have looked on Google but I’ve got ALL the signs of IBD including the joint pain and fatigue. This bloody doctor didn’t even see me
just because blood test was fine, that must been I’m ok.It took 8 months to get that appt on the NHS and after just 2 phone calls, it’s done and dusted with.
If you're unable to go to a+e ring your GP up everytime and ask for an emergency appointment.This is what I was thinking, but I’m on my own 99% of the time with a toddler. It’s just not practical to go to A&E. Im just fed up. I shouldn’t have looked on Google but I’ve got ALL the signs of IBD including the joint pain and fatigue. This bloody doctor didn’t even see me
It took 8 months to get that appt on the NHS and after just 2 phone calls, it’s done and dusted with.
They have a duty of care and will soon get you seen. It's awful we have to do these things.
Same happened to me until I was hospitalised with sepsis and had to have emergency surgery to remove the majority of my bowel.
I can understand the first appointment being so short, without the bloods and stools they can't do the initial tests. When I was diagnosed with Crohn's my inflammation markers on my bloods were over 90, when they should be something like below 8. I was also B12 and Iron Deficient which is another sign of inflammation.
The blood test results would trigger further tests like colonoscopy etc. My IBD Team told me last week the backlog is horrific for MRI and Endo. Talking months rather than weeks.
Bright red blood is usually in indication of you going to the loo so much, it's coming from right by the anus. Any bleeding from within the bowels would be darker and in the poo itself.
As you're going to the loo a lot, are you also loosing weight without trying?, I lost 20kg in about 2 months prior to diagnosis.
You can try and see if adjusting your diet helps. Cutting out raw fruit and veg, anything with seeds and eating processed foods, mash, rice, pain chicken. Stop pop, alcohol, coffee as well. If you stop going to the toilet so much, and lose the pain, try and introduce the eliminated items one at a time. Then if you do flare you can take that info to the Dr.
Yup!
And record everything.
I wrote down everything I ate. When I had pain and what scale. How many times I went to the loo and what type it was. If I had blood. Recorded levels of fatigue.
it’s just insanity.
Does anyone hear get frequent stomach/bowel/intestinal rumbling and gurgling - but not associated with diarrhoea?
If so, does it tend to happen during the night?
I've had this on and off for a while and can be so loud it wakes me up.
If so, does it tend to happen during the night?
I've had this on and off for a while and can be so loud it wakes me up.
Yes, I’ve had this for years. I can be ok and then as soon as I get in bed, it starts. Not sure if it’s due to our bodies relaxing
Yes, my partner says it sounds like a washing machine.
Used to - but when I went gluten free, I realised after a while that it hardly ever happens anymore. When it does, Mr D normally disappears off to discreetly check food labels and subsequent evening meals have been things far less likely to carry any risk at all of cross contamination (chicken and potatoes, steak and salad, that kind of thing, rather than something processed labelled GF) until all is quiet again.
Whilst he's never complained of any symptoms, I have noticed that since the house is almost 100% GF (he doesn't want to waste money getting separate things, except for the occasional bag of crisps that I wouldn't like the flavour of in the first place, never mind them being unsuitable), he's stopped trumpeting the onset of sleep as well.
Long shot but does anyone have any tips / recommendations to help ease UC symptoms during a flare up? Mainly bloating, urgencies (
), inflammation etc. I’m waiting on my referral letter to go back to the hospital but was hoping for some coping mechanisms in the meantime? I’m currently not taking any prescribed medication. Any advice appreciated x
), inflammation etc. I’m waiting on my referral letter to go back to the hospital but was hoping for some coping mechanisms in the meantime? I’m currently not taking any prescribed medication. Any advice appreciated xSpeak to your gp and get some stronger pain medication and see if they can start steroids whilst your waiting to see your specialistLong shot but does anyone have any tips / recommendations to help ease UC symptoms during a flare up? Mainly bloating, urgencies (