IBS/IBD sufferers...

[Sheabutter]

My colitis symptoms have started getting bad. I get maybe a three second warning to make it to the restroom, bloating, and I have strong cramping. I am in the process of booking a GI appointment. I have seen maybe seven GI’s and only liked one. I’m very attached to her but she no longer accepts my insurance

I tried finding relief using a low fodmap diet today. It was reassuring to see that many of the fruit and veg I had eliminated from my diet were already on the fodmap “bad” list. It could be a coincidence that I experienced a small alleviation of symptoms today, so I’m going to continue for a few more days and see how I feel.

ETA: To add bloating to my symptom list.

 

[Peggy5]

Hey guys, great news, I’ve tested positive for Covid this week!

IBD team have told me to stop taking Azathioprine for 2 weeks.

I’m not feeling too bad at the moment, oxygen levels fine, mostly achy, headachy and coughing.

I had infliximab last week so thinking this could be a slow recovery.
Anyone else have any experiences they can share or have any tips!?

Ugh so sorry you’ve got the dreaded Covid!! I tested positive 3 weeks ago and I have crohns, it didn’t affect my meds as I had my Infliximab infusion the week before.
Not gonna lie - it wasn’t pleasant! I couldn’t believe how poorly I was considering I’m double jabbed. But it only lasted around a week! I mainly suffered with vertigo, migraines and exhaustion plus a heavy head cold. Im feeling back to normal now but still having a nap every day, think it’ll just take a while. I’ve been in “remission” for a good few years but have always struggled with fatigue, so unsurprising it’s left me tired.
Really hope you have a fast recovery! Take care and make sure you get lots of rest xx

 

[Carapop]

Hey! You’re so lovely to remember me and my dodgy guts and check in. I believe I am fully back to ‘normal’. My normal was never properly normal but no more stomach cramps and I can eat cheese again! I am still a bit hesitant around food and not quite ready for a slap up meal out yet. Never want to go through that ever again, haha! How are you?

Ah I’m glad! You did stick in my mind and I wasn’t sure if it would be weird or intrusive looking for an update but figured having someone invested in our wellbeing can’t ever be seen as bad right?!

can you tell I’m an over thinker

I had a colonoscopy and gastroscopy last week and biopsies taken so awaiting results now. There was nothing of immediate concern anyway. My tum has been entirely manageable the last week but I’m increasing my SSRI dosage next week so hoping that doesn’t rock the boat.

I never trust the calm seas ! Thanks for asking

 

[EllaEm87]

I’m the same I’m suffering badly this past few weeks. Stool sample gone off (which traumatised me) and I’ve more bloods on Thursday - only got some in March but he wants them all done again and wouldn’t say why. There did come back an issue with my liver results the last time - hopefully it’s not that! But I’ve been so sick lately, way more than usual. So hopefully I get an answer at the end of it, and you too!

Blood results can change in a day so makes sense he’d request them again to make sure your CRP and so on are all ok. March was 3 months ago!

 

[MickeyMouseClubhouse]

I think a stoma might be on the cards. I've already had the majority of it removed. Tbh at this point I'd rather they just cut it all out and I get a bag.

I can only imagine how frustrating it must become at that point. Sending positive thoughts

 

[Ro98]

I’ve had IBS since a teenager ( now late 20s). Since having my son 7weeks ago I’ve had non stop flare for the last 2weeks. But the difference is there been some blood in it (red) & it’s been so mucus filled. I’m absolutely dreading if it is just IBS or something more Saying that I think it’s lack of sleep/dehydration/I ate a spicy dinner with tomatoes in last night & just in general not eating well.
My IBS disappeared in pregnancy! Anyone find the same?

 

[tellingitlikeitis123]

Thank you, shes had a colonoscopy and endocscopy which didnt show much but the consultant said it can be hidden, shes also had a ultrasound which showed swollen lymph nodes in the stomach. Its the is it isnt it thats the problem i think x

 

[Olive16]

The foodstuffs being fine then turning on you is quite common imo.
My big problem is bread of any sort which is frustrating as I love it. Your symptoms with the pain, diarrhoea and nausea sound horribly familiar (I'm diagnosed IBS).
I've avoided bread for months (had been fine for ages before that but then it had all kicked in again). Anyway two days ago I had caesar salad with a few croutons. And ate them thinking they wouldn't harm but omg. Basically a day in bed clutching my stomach. I felt so stupid. Oh and I can't eat pasta now either But portion size in anything is also a trigger - have to have quite small meals.

Im going to look at FODMap in more detail - someone I work with has also suggested Paelo!? I love bread and pasta too! Pasta is my favourite meal ever!
---

Other issues could be Gallstones or Bile Malabsorbtion.

I have had my gallbladder removed - a good 12 years ago, as this is typically the first thing the Dr thinks it is - Will look into the Bile Malabsorption. Thankyou!
---

I have the same thing with sweating and dizziness when I have a Crohn's flare .

Has the Dr referred you for a colonoscopy? It may be that you have something like diverticular disease.

No, regardless of the blood tests, stool samples and symptoms still happening, this has not been offered to me.

 

[Inforapenny]

Does anyone suffer with endometriosis? I was diagnosed a couple of years ago and put my bowel issues down to that. I had surgery to remove it and my doc advised there was no endo on the bowels but I'm still suffering with bowel issues.

I'm still suffering with diarrhea every morning (2-3 times), cramps in lower tummy, worse on the left side but can happen all over, I have chronic fatigue nearly all the time, headaches, joint pain and the most annoying thing has been recurrent mouth ulcers all over the back of my throat.


My GP has done bloods and my CRP levels have been consistently raised, she mentioned this can happen with IBD.

Has anyone experienced anything similar? I don't know wether to go back to gyne or try a gastroenterologist?

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

 

[notdollybutmolly]

Hello, I have found my people *waves* I was diagnosed with IBS in my late 20s but had stomach issues for years before that. It definitely seems to be triggered by stress, hormonal contraceptives and a bit of what I eat.

The only times I have been truly IBS free is when I've been pregnant. My midwife did say this is quite common but they don't really know why. I also stopped using hormonal contraceptives after my youngest was born and haven't had an attack since then. Not being at work helps a great deal too as I can run to the loo when I need to (toddler permitting!).

Omg I FEEL SEEN!!!!!

I’ve had awful/stressful/undiagnosed-so-mightn’t-even-be-IBS since I was a kid (I’m 34 now) and as soon as I got pregnant every bad symptom vanished (except diareeah which I believe to be stress caused my job at the time). I breastfed my baby until he turned 1, and a year later my symptoms are back with a vengeance.

It’s just frustrating because there are so many things that it can be. I’m now getting flare-ups because I’m STARVING because I am afriD to eat !!!

I’ve had a full blood tests for coeliac disease, iron, vitamins etc, and poop tests for bowel cancer and ovarian cancer so I am satisfied my new dr is taking me seriously, she does think it is IBS though. The radiologist rejected her request for a scan of my stomach and pelvis however - should I insist on this?

Does anyone know if the Ibs symptoms can be connected to coming off anti depressants too?
I was on sertraline for 2 years and came off it recently and I’ve been suffering physically and mentally since.

 

[Shoequeen91]

Does anyone suffer with endometriosis? I was diagnosed a couple of years ago and put my bowel issues down to that. I had surgery to remove it and my doc advised there was no endo on the bowels but I'm still suffering with bowel issues.

I'm still suffering with diarrhea every morning (2-3 times), cramps in lower tummy, worse on the left side but can happen all over, I have chronic fatigue nearly all the time, headaches, joint pain and the most annoying thing has been recurrent mouth ulcers all over the back of my throat.


My GP has done bloods and my CRP levels have been consistently raised, she mentioned this can happen with IBD.

Has anyone experienced anything similar? I don't know wether to go back to gyne or try a gastroenterologist?

It could be diverticular disease. Ask for a CT scan if possible as this was how mine was diagnosed, sometimes it can be diagnosed by colonoscopy but because of how young I am doctors weren’t keen on using this as a way of diagnosis for me.

Usually cramps on the lower left side are diverticular related, I tend to get them in the upper left side though. I was really fatigued, not as much now but I have been making sure to take magnesium and B12 daily for the last six months on and off. Also my CRP is only ever slightly raised and more so borderline than a major concern.

No one really knows about diverticular disease when I mention is so may be worth looking it up or mentioning it to your doctor. Mine was only diagnosed after I was hospitalised for four days this year cause I couldn’t keep fluid down.

Hope this helps slightly.

 

[lorballs]

I had really similar when I was diagnosed with Diverticular disease. Depending on how old you are it can be quite common and/or unheard of. I tend to have a lot of excessive trapped wind (mainly more so burping which makes me have chest pain and/or just general discomfort. Where is your back pain? Upper back or lower? (which I’m currently having quite a lot and then panicking thinking I’m having a heart attack)

Pain for diverticular is usually bottom left hand side. I usually have niggles in my lower left back too.

Hope you get it sorted x

Mines is middle upper back I’m going to call the gp again 2mo.. I’m sick of being given omemprazole fs

 

[Proof8]

Sorry if it's already been discussed somewhere I haven't had time to read the thread, is anyone on biologics? I just got my date today to have my first infliximab infusion after being hospitalised twice and 2 courses of prednisolone in 6 months and I'm absolutely terrified. Especially as the risk of TB keeps being mentioned to me by my gastro consultant.

I'm scared of ending up more severely ill by starting something that's supposed to help me.

I have endometriosis and ulcerative colitis and have had a really awful couple of years between them both.

Anyone's experience or knowledge of biologics is welcome!

I'm on infliximab and have been for one year now, I'm on a double dose now because my levels were low. I'm now in remission from pancolitis. When I say it saved my life I mean it.
They do a chest x-ray to check for TB and give meds if it's there, you're not at extra risk of getting it. Nothing to worry about.
You have a blood test before each infusion, where they check everything to ensure you're good to go.
I'm a massive worrier but honestly just feels part of my life now. This is my second biological I failed vedo. I don't get sick more than anyone else or anything like that. Might take a little longer to get over a cold. I do have to wear sunscreen even in the winter as my skin is more sensitive.
The loading doses are heavy going so make sure you have time to rest.
If you have any other questions please ask and I'll try my best to answer, I know it's a very scary time.

 

[SqualorVictoria]

Peppermint tea is delicious!

It does provide some relief but it's not miraculous

 

[MickeyMouseClubhouse]

You'll be hooked up to monitors, so they'll be keeping a close eye on you

 

[Hello Kitty]

I have Crohn's Disease and IBS. I've had the majority of my bowel removed and I'm currently on a chemotherapy drug and steriods. Been having to have a liquid only diet for the past 4 months on and off. Currently in hospital with an anal fistula that requires surgery. Oh the joys of having IBD.

Sending love

I have Crohn's and had an anal fistula 10+ years ago, the pain from that was awful. I was so relieved after the surgery.

What medication are you on at the moment?

 

[AlanBanan]

I don’t post here I usually read as I resonate because I have IBS. But OMG, had a terrible flare up today that has lasted all day, I think it was the food and drink I had yesterday. I woke up at 10 and was fine and at around 11 my stomach just began to cramping, and I spent a half hour in the toilet, turning pale, nauseous and I even had to vomit in the bath because the pain was so bad. I was convinced I had food poisoning, but it’s definitely not as my entire family are fine. It’s alright now but my stomach is still bloated and I keep getting the feeling I’m not empty.

if I am having a flare up, I try not to drink anything unless necessary, no water, no tea, nothing. It makes it worse. If it’s a day of a flare up I don’t eat neither, as that makes it worse, the next day I will eat something small and see how it goes. Then I’ll try to drink again if it goes well.

But happy Christmas to you all!

 

[Sheabutter]

My UC is rearing her head I got really arrogant and was eating too much veg. I can’t believe that vegetable soup could do this to me but this is exactly how things all started in the first place. I don’t get how I’m supposed to have nutritious foods if they make me sick like this. It’s only bananas and carbs for now.

 

[under the ivy]

I think I have IBS - I’m lactose intolerant which doesn’t help but I still get the odd flare up. My GPs fob me off all the time. The other weekend I was really poorly with it

 

[Sheabutter]

Cut to 2020 and I learned about “live foods” and “gut bacteria.”

Just googled live foods and seems I misspoke. Fermented foods is on the money. Live foods are lava for the time being as I go through the slow process of figuring out what my body likes and doesn’t like - for example, it is not loving raw celery I had as a snack Celery in its rawest form is a live food and *not* what my body needs.

Also the teas that I currently drink are loose teas - formosa oolong and an earl grey that goes by the name of lords tea (definitely not a green tea but which came in a green tin Smart, Sheabutter). Oolong is also referred to as Black Dragon Tea so that is where that confusion stemmed from.

Green tea is next to be added after I inspect kefir which, honestly, with its extensive list of bacterias and flavor profile has me quite nervous. But I’m very excited. I’ve wanted to do something like this ever since I watched this short NY Times documentary:




Just not using his method