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Hello Kitty

VIP Member
I have Crohn's, I've had it for over 10 years. Before diagnosis and about a year or so later it was horrific. After months of being on steroids and Pentasa, I went into remission. I've had small flare ups since and maybe 2 major ones since then but mine is very well treated and my consultant really is amazing. I am on Humira injections.
 
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Shoequeen91

VIP Member
This was my original post... since then I have been tested for Coeliac, Crohns and something else... however nothing came back to confirm any of these... the above happened again today. I am becoming so frustrated that I have no clue what is causing this or what I can do to stop this happening... I am just about to start training for the Police, but feel this is going to affect my career if this is something that continues to happen ever 6mths or so... 😭 Is it likely IBS? Or could it be something else... I'm just at a loss as to what to do! Sorry to be a moany myrtle!
Don’t apologise about moaning. I had similar pain in my upper left side by my ribs. I couldn’t really keep anything down including liquid. I was told it could be my stomach acid and I was then diagnosed with diverticular disease in both my ascending and descending colon, this often gives me discomfort in my right rib and left rib.

Depending on how old you are, they don’t usually test for anything diverticular related especially if you are younger as it’s not really seen in people who are under 50 (I believe. I was 29 when diagnosed). However I have since been told that lots of people have it but they don’t realise they have. Mine was diagnosed by CT.

I was also in and out with stomach acid issues so it could also be this. Maybe gastritis if your stomach is irritated. There are simple spit tests for this, I believe. However, I had mine found by endoscopy. Really hope you get it sorted. 💖

p.s. Also, just to add sorry I keep popping and talking about my diagnosis. I think I do so because it’s something that doesn’t seem to be spoken about a lot but a fair few of you are having the same symptoms I had when I had my first flare up.
 
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Peggy5

Active member
Firstly Merry Christmas everyone. Not sure why I’m posting this on Christmas Day but suppose it’s better to just write it down before the madness starts!

Recently had some bloods taken and found out that my iron is low (7.4 when it shouldn’t be lower than 10-31). Now for those of you who may have seen my posts on here before you will know I have diverticular disease. I have a lot of symptoms of IDA (iron deficiency anemia) such as I’m always cold, I bruise really easily etc but I’m also aware that taking iron tablets orally is harsh on the gut and can cause constipation which I don’t want with diverticular disease. Has anyone here had low iron in line with their IBD/IBS? If so how did it get resolved?

I don’t want my GP to palm me off with iron tablets and this make me have a flare up. Am I being stupid to request they look at giving me something intravenously or iron injections (if there is such a thing - I’ll admit I need to research). I’m just sick of being ill, or as I always say “I just don’t feel right”. I’ve gone from having great health to 80+ incidences on my health record this year alone since being diagnosed with diverticular disease. It’s a nightmare! I’m young, and in all honesty as ignorant as it sounds, I don’t have time for my body to be fighting against me.

Appreciate any opinions / thoughts ♥🎄
Definitely ask for an alternative to standard iron tablets - there’s a “tummy friendly” version but they’ve still caused problems with my crohns. I’ve had iron infusions in the past which have worked wonders, I’m not sure what my iron level was at the time but very low. Hope you get it sorted! X
 
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Blahblah93

VIP Member
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.
Unfortunately this story is so common with IBD. I know it puts you in a shit position but you've got to turn into abit of an arsehole 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 shit until its too late and you're sitting on that operating table.
 
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Blahblah93

VIP Member
I've mentioned before the prep gave me seizures so the procedure didn't go ahead. I didn't know you could be sedated for it though, they never said that to me. I don't know if I'm brave enough to try and go for it again. They said I'd have to stay in hospital the night before to take the prep because of what happened last time, imagine that toilet wise! Still having a lot of problems soiling which is a nightmare.
When we say sedation - they don't knock you out they just give you a drug that makes you feel abit high.
 
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I've got my colonoscopy tomorrow and I am terrified. Fasting starts now. Prep at 5pm and 9pm. Wish me luck. 😩
Keep your water up, try and get a good nights sleep. In my experience the team that will do it will be really friendly and put you at ease, they'll talk to you throughout often about things other than the procedure.
 
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Blahblah93

VIP Member
No bug Lovely - fine within an hour or two. No Sickness or Diarrhoea since. Been to Dr's this morning, another stool sample - talks of a possible Allergy or IBD - but he is reluctant to say or treat as unable to pin point a trigger! Got to keep a food diary.
If this keeps happening demand to have a colonoscopy. They don't do shit unless you make a fuss.
 
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maytoseptember

VIP Member
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!
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 😫
 
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Anyone moved from IV to SC Remsima (Infliximab)?

Interested in any side effects, or issues not staying in remission!
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If this keeps happening demand to have a colonoscopy. They don't do shit unless you make a fuss.
Deffo!

Bloods and stool tests for inflammation markers, MRI and Colonoscopy are the 4 things I'd be demanding, just get straight to the bottom (no pun intended!) of it!
 
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ruby_red

Member
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
 
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Keet

Chatty Member
I've woken up to the worst flare :(
I think it's because I was off work yesterday so for some unknown reason I felt anxious about coming back in today. I have cramps, I'm sweating but I've got goosebumps. I keep getting waves of nausea and my stomach looks like I'm 6 months pregnant. I feel hideous.
Hope you feel better soon
 
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Mycatoliver

Well-known member
So sorry I thought I had replied. Do you have an IBD nurse? I rang them and they organised a colonscopy to confirm. I then had to have surgery but it was a quick in and out job. Unfortunately they do tend to come back. You need to make sure it doesn't get infected so make sure you see someone about it ASAP.
Hello,
Thanks for replying
I got anti biotics after a phone consultation due to having covid and the gp sort of took it seriously.
It Cleared up a little, for a week or so and now unfortunately I’m very unwell and in hospital tomorrow because I should have been seen two weeks ago.
I’m in lots of pain.
Very worried
Probably surgery.
Trying to be positive but I’m struggling.
Did you get admitted and then get the op there and then?
glad it was a quick job and hope you’re doing ok now x
 
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I thought I was finally over the E. coli (as did Mr DragName) and so we had pasta in a tomato sauce with a wee bit of cheddar cheese on top for dinner. The first ‘proper’ dinner in 2 weeks. My stomach cramps started almost immediately, clearly a huge mistake! I really hope I’m not lactose intolerant forever, I properly love cheese, haha!
 
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Jelly Bean

VIP Member
That’s how mine started, following a bout of food poisoning. Hope it works for you.
Thank you. I think the real problem started when I took Immodium after the food poisoning. Probably TMI but instead of all the 'poison' (diarrhoea) leaving my body it was sealed inside. Reabsorbing or whatever it does. Obviously not a scientific analysis but in my head this is what happened. My body was trying to expel the danger and I kept it in.
 
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Hello, I feel like I’m hijacking a bit but this is a thread that might actually have some helpful advice!

I have kind of ‘self-diagnosed IBS’. I’ve suffered a lot with anxiety which tends to be very physical in nature. At the risk of being really TMI, my bowel movements are rarely normal and pretty much always loose, but it goes hand in hand with my moods and anxiety levels, so I think I just wear my anxiety very physically. I try to take probiotics and I was on SSRIs (reducing off then at the moment) and I sort of have my own ‘normal’.

Anyway, I’ve been away on holiday and I’ve eaten something that’s disagreed with me (as has my husband) and we’ve both had diarrhoea since Saturday night, mine worse than his. Whilst we were on holiday I took Imodium just so I could leave the hotel. Yesterday we lived on a very light diet of toast and I don’t feel like I’m getting any better, in fact I now have more stomach cramps than I did. Every trip to the toilet is pretty unpleasant, shall we say. We’re trying to stay hydrated, I’ve had a supermarket’s own Actimel today alongside my probiotic pills. I’m starting to get hangry but I don’t fancy any more quick fire trips to the toilet than I’m already dealing with. There’s been no vomiting (which I’m grateful for as I’m emetophobic) but I feel really sick today.

I cannot stand the taste, smell or texture of bananas which of course seem to be Dr Google’s number one food stuff for people in my situation. Can anyone recommend anything (food, OTC meds, herbal remedies, interpretive dance) to help me out? I don’t want to take any more Imodium because I’d like whatever is causing me so much upset to get out of my system as quickly as possible!
 
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funkimunki1984

Chatty Member
Hi all just found this thread, it’s so nice to know I’m not alone in the world or made to feel like I’m going crazy.

I got diagnosed with IBS in 2003 after I lost two stone in a month from being unable to eat and being hospitalised as a result. Found I can’t eat many carbs such as pasta, rice, bread and potatoes (much to the chagrin of my Irish side - officially the joke in my family). So I managed it with diet and exercise.
Then in 2020 I ended up on two sets of antibiotics with a UTI. But with it being lockdown no GP saw me to confirm with the dipstick test, so basically I ended up with colitis due to killing all my good bacteria (lesson learnt always take yakult with antibiotics) as a result of having C Diff. I spent two weeks in hospital on a drip with crazy strong meds in isolation.
I ended up with worse stomach pain than before. Apparently the colitis is gone but I still have all of the symptoms. I begged my UK dr to help, had scans and tests to be told it’s IBS.
I moved to the states and within a month I had a colonoscopy biopsy and I’ve been told I’ve got microscopic colitis which doesn’t show on scans. Same symptoms and effects but invisible. As if life isn’t hard enough with any bowel condition, now it bloody hides.
 
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ChampagneBox

VIP Member
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!
The feeling like you haven’t finished can be haemorrhoids! But yes lots of fibre water and not sitting for too long can help!
 
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This is me.
Currently being referred back to my bowel consultant as my gynaecologist is like nah this isn't endometriosis.
They think it's Crohn's
I have endo but it looks this has masked the crohns and I was just ticked off the list and now the gynaecologist is like it's not endo but I have fallen through the cracks.


I have been extremely ill. It's no fun.
I've been hospitalised a few times, with severe bowel Infections. They've found tethering and weak areas of the bowel and scars etc

I have some hideous problems that doesn't coincidence with my period or ovulation.
Blood in stools
Fever...feels like I'm coming down with flu
Migraine
Sinus problems
Blood in stools
Mucas in stools
All of a sudden horrendous diarrhea
Constipation
Extreme tiredness with a flare-up like 14 hours sleep and still can't wake up
Brain fog
Face rash with flare up
Mouth ulcers
Have had angular cellulitis that needs strong meds as my body can't clear it up and fight the infection
Horrendous stomach pain in areas I can pinpoint ...like I was to pull my intestine out
Stomach pain makes me faint

Idk if this is crohns but I have it in the family and my GP is now going back to my bowel consultant.
I don't buy that it's endometriosis
With a list of symptoms like that a referral to Gastro would sort it out.

My GP decided they'd try and diagnose and spent ages faffing about. I moved house and GP, and the new GP referred me to Gastro. First apt with the consultant and he said if was a betting man he'd say it was Crohns. Colonosopy, lots of bloods and an MRI and I had a diagnosis and was on treatment within 12 weeks (this was 2017, so pre Covid).

Had a couple of flares early on, but been in remission now since Nov 2018.

Hope you got well soon, as others have said, shout if you have any questions!!
 
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Apple In My Pie

VIP Member
Eh I have just been tentatively diagnosed with this after two months of acid reflux hell which has just turned into wind/bloat/pain and constipation, not sure if it is IBS but do relate to some of the symptoms & have family links (literally every family member I know has it) I have been put on the evil looking FODMAP diet, this close to Christmas as well, how evil and inconsiderate… someone please help me 😆😆😆 all my lovely broccoli and cabbage, no more! i have genuinely spent the last 3 years having broccoli n cabbage n asparagus w every meal (it’s all fun and games at Chez Apple 💨) - but no more!

(In all seriousness though I have been trying to eat healthily for the last 3 years in an attempt to slim down and have ended up with a shitty mindset towards food, not a full on eating disorder but disordered eating iygwim and the guidelines to this diet just sound awful 😩 I feel like there’s nothing nice to eat!?!)
 
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maytoseptember

VIP Member
I've had IBS for about ten years now, and I'm being sent for an urgent colonoscopy in the next couple of weeks due to stomach pain waking me up at night. I've never had one before and I'm terrified. 🫣
I had one last year and prep was worse than the procedure. They give you sedation which makes you feel mildly drunk, but you’re with it throughout. Then, later that day, you’ll realise you’ve forgotten most of it.
 
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