IBS/IBD sufferers...

1
Hi,

I have distal colitis and was diagnosed when I was 21, I had been having many symptoms which prompted me to see my GP which included bloating to the point I was asked 'when are you due', being overcome the feeling I was about to puke, going to the toilet loads and I was also losing blood. I went to the GP on repeat and was told I had IBD, it was common and sent on my way, blood tests showed some abnormalities but they never pursued anything.

My family paid for me to see a gastroentrologist privately for a consultation and with no tests or investigation he said 'ulcerative colitis'. It was around £200 and he then transferred me to his NHS list for urgent treatment. I am almost 30 and still under his care, still suffering and i firmly believe of my GP had listened and cared about my complaints, it wouldn't be as bad as it is now. I've had horrendous health since and I think it has been a domino affect on my body.

I would highly reccomend, if you are able to do so - going for a private consult.

I am now on vedolizumab treatment.

Dx
 
it’s not been changed?! said:
🤢🥴 it’s one of those days today. I’ve bought some peppermint tea 🤞🏻
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I'm having one of those days too. I thought my flare had disappeared but I had a terrible sleep last night and I wonder if that's set me off again. I do notice when I sleep badly my IBS plays up. Does peppermint tea actually work? I've never tried it, I can't imagine it tastes very nice 🧐
 
In experience I find IBS caused a lot of anxiety which makes the condition even worse. Having some coping mechanisms doing flare ups can help. I’m careful of my dairy intake now. Never have I been diagnosed with IBS but dairy products don’t agree with me in large quantities
 
Mine started following a bout of food poisoning, stuff the dr prescribed didn’t help, and having to take stuff 20 mins before eating was a real pain whilst working. The only thing that helped me was silicol available over the counter, and in h&b. Only one spoonful a day. Have been symptom free for a while now
 
Hey guys, so sorry to hear there are so many suffering like myself but it is also so comforting in a way.
I am wondering if anyone could help with my situation as I feel completely fobbed off by my doctor at the moment.
Just over two years ago now I started to notice that gluten was a trigger for me, bloating, wind, diarrhoea, extreme fatigue and stomach pains. Anyway I just cut it out and it stopped any of the bad symptoms. Happy days. However, 8 months ago the symptoms started again with foods that weren’t triggers before, sweet potatoes, white potatoes, beans, garlic, fatty foods. It was happening almost every night so I just cut out all the trigger foods again. Then foods that should not be causing triggers started such salads, a gluten and dairy biscuit for example.
Phoned the doctors and got what I was expecting “it’ibs take merbeverine” (sorry if that’s spelt wrong) it did absolutely nothing and now I’m at a loss
Do I accept it’s ibs and avoid all of the trigger foods forever? My evening meals are becoming awfully bland and because I’m anxious to eat I’m reaching for a bowl of gluten free cereal instead of a proper meal. Sorry for the rambling I needed a moan about this too 😂
 
Maybe try the Fodmap diet? Some foods for me are a total no go area, even the good ones such as broccoli.

I mentioned a few weeks ago I was starting a course of Symprove and while it has not eliminated symptoms completely things are much improved
 
it’s not been changed?! said:
Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished 😩 I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!
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The feeling like you haven’t finished can be haemorrhoids! But yes lots of fibre water and not sitting for too long can help!
 
I have issues with the muscles being triggered to go, so have to use a medication for that. I have had GP's and such argue over the years to use movical but that just ended up with emergency visits to the loo. More and more food has bothered me and I'm at a loss, anyone else with this issue vs the runs? It's frustrating too when the muscles are finally triggered, by the med, I am in horrible pain!
 
it’s not been changed?! said:
Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished 😩 I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!
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There’s a medical term for that - incomplete evacuation. It’s a genuine thing, and actually considered a form of constipation. You can go every day but if the bowel isn’t properly emptied you can still get backed up and uncomfortable. It’s horrible.

I’ve had bowel issues all my life. Mostly related to slow transit/constipation (which I take daily medication for) but developed IBS as an adult. Eventually worked out that I needed to cut out dairy which had made a huge difference, but recently I’ve had a couple of attacks and thought “What NOW?” I thought cutting out dairy was the end of it 😫
 
I'm really suffering today and I don't know why. I felt fine this morning, I've not eaten anything which would set me off.
I'm literally sat at my desk at work with tears in my eyes as I write this. I keep having to go to the toilet, it's only a small office with 3 of us in today, the toilet is right behind the room my colleague sits in and I have to go past her to get there, so it's not even like I can sneakily go. I've got that awful feeling of just never having quite "finished" when I go to the loo..
I feel nauseous. I'm hungry, but I daren't eat. Each time I go to the loo I feel like any good which was left in my body has gone, it's like I'm literally removing all the nutrients/energy. That's the only way I can describe it. I am shakey, feel hot then cold. This is one of the worst flares I've had in recent months as I've been managing things really well :(
I hate IBS. It makes life so difficult.
 
I have ibd (ulcerative colitis) finally in remission after years of being undiagnosed and fobbed off. I had stomach pain, rectal bleeding and clots, erythmea nodusum(inflammation under the skin) a feeling of needing to go constantly but passing just blood and mucus. I was on prednisone for 7months (the moon face, sweats, constant hunger is very real) im now on biological immunosuppressants as other medication just didnt work for me. I had a blood transfusion when i was first admitted because i was very anemic.
There are tests for diagnosis, sigmoidoscopy to look at the sigmoid colon, colonoscopy, blood tests to check crp levels and a calprotectin test which tests the stools for inflammation of the gut.
Dignity goes straight out of the window after having doctors stick a camera up your arse and nurses administering enemas to prep you for cameras.
 
Mollyoscar_ said:
I have ibd (ulcerative colitis) finally in remission after years of being undiagnosed and fobbed off. I had stomach pain, rectal bleeding and clots, erythmea nodusum(inflammation under the skin) a feeling of needing to go constantly but passing just blood and mucus. I was on prednisone for 7months (the moon face, sweats, constant hunger is very real) im now on biological immunosuppressants as other medication just didnt work for me. I had a blood transfusion when i was first admitted because i was very anemic.
There are tests for diagnosis, sigmoidoscopy to look at the sigmoid colon, colonoscopy, blood tests to check crp levels and a calprotectin test which tests the stools for inflammation of the gut.
Dignity goes straight out of the window after having doctors stick a camera up your arse and nurses administering enemas to prep you for cameras.
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All dignity definitely goes out the window after a hospital stay.
I also have UC and have been flaring on and off since jan . Tiredness and anaemia is the worst. Glad to hear you’re on the mend ☺️
 
Mollyoscar_ said:
I have ibd (ulcerative colitis) finally in remission after years of being undiagnosed and fobbed off. I had stomach pain, rectal bleeding and clots, erythmea nodusum(inflammation under the skin) a feeling of needing to go constantly but passing just blood and mucus. I was on prednisone for 7months (the moon face, sweats, constant hunger is very real) im now on biological immunosuppressants as other medication just didnt work for me. I had a blood transfusion when i was first admitted because i was very anemic.
There are tests for diagnosis, sigmoidoscopy to look at the sigmoid colon, colonoscopy, blood tests to check crp levels and a calprotectin test which tests the stools for inflammation of the gut.
Dignity goes straight out of the window after having doctors stick a camera up your arse and nurses administering enemas to prep you for cameras.
Click to expand...

Oh I had EN years ago on my legs are it was agony when I'd knock any of the bumps. Never knew what the cause was
 
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