IBS/IBD sufferers...

[Mycatoliver]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

 

[EllaEm87]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

Try Vaseline after wiping on some tissue. Sounds like excoriation which can cause skin to break down. I also use Medihoney barrier cream from Amazon when flaring, although Vaseline is cheaper.

 

[Mycatoliver]

Try Vaseline after wiping on some tissue. Sounds like excoriation which can cause skin to break down. I also use Medihoney barrier cream from Amazon when flaring, although Vaseline is cheaper.

Thank you
I’ll definitely try it

 

[yeoooo]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

oh no! fellow endo girl here too (bowel impacted). vaseline is a good shout and to be honest i used nappy cream sometimes too! if it gets worse speak to your doctor to see if there is something that they can give you. i sometimes use my daughters timodene cream (steroid prescription cream)

 

[Blahblah93]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

Are you bleeding? I had a fistula and it felt like that.

 

[MickeyMouseClubhouse]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

Before I had treatment I felt like this all the time, and kinda swollen due to going to much.

I used an antiseptic cream to help keep everything clean and help it heal

 

[Mycatoliver]

Are you bleeding? I had a fistula and it felt like that.

I’m a bit concerned it’s a fistula
I’ve never had one and good old google doesn’t help.
Sorry this is gross but I’ve now noticed a horrible smell. I’m in quite a bit of pain/uncomfortable
Not sure if there is blood as I’m on my period.
Sorry for tmi
Any thoughts on what I should do?

oh no! fellow endo girl here too (bowel impacted). vaseline is a good shout and to be honest i used nappy cream sometimes too! if it gets worse speak to your doctor to see if there is something that they can give you. i sometimes use my daughters timodene cream (steroid prescription cream)

I feel like bowel endo goes under the radar and no one really understands the impact it has on our lives

 

[Blahblah93]

I’m a bit concerned it’s a fistula
I’ve never had one and good old google doesn’t help.
Sorry this is gross but I’ve now noticed a horrible smell. I’m in quite a bit of pain/uncomfortable
Not sure if there is blood as I’m on my period.
Sorry for tmi
Any thoughts on what I should do?


I feel like bowel endo goes under the radar and no one really understands the impact it has on our lives

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.

 

[it’s not been changed?!]

Has anyone experienced colonic hydrotherapy?

 

[WilmaHun]

Does anyone else feel like their symptoms are sooo much worse in the heat? I've had no flare ups for ages, been doing really well, then suddenly in this heat I am having the mother of all flares. I've not eaten anything different so it can't be food that's set it off.

 

[FoxyBingo]

Does anyone else feel like their symptoms are sooo much worse in the heat? I've had no flare ups for ages, been doing really well, then suddenly in this heat I am having the mother of all flares. I've not eaten anything different so it can't be food that's set it off.

Yes, heat definitely impacts me. Hope you're feeling better soon x

 

[Slaybutter]

I have crohns and severe endometriosis of the bowel I’m having a particularly rough flare up that got better for a few days and has now come back.
I noticed a few days ago that my bum is really sore, felt like it was sore from all the wiping but now it feels like I have a cut, it’s sore especially when I walk or move. I feel it there constantly..
It’s kinda itchy but feels more like a cut than a rash.
has anyone experienced this?
had severe diarrhoea and constipation for around 10 days now, fed up and feel exhausted

A&D rash ointment is really good if you still need relief. It’s not just for rashes it is also a skin protectant. Feel better !!

My stomach is bloated and feels tight like a drum. I only had sushi which should be fine for me — fish, rice, seaweed — but now I’m wondering if they added sugar to the rice, marinated anything with garlic, etc.
Aside from this setback I am doing FODMAP diet and even though it’s meant to be temporary, I’m not in any hurry to re-add foods. Each time I tried it has been just bad/painful news.
I saw a GI a few weeks ago and he said given my thyroid auto-immune condition, my new gluten and other food intolerances come as no surprise. In the same breath, he said he wants to do a colonoscopy. I am dreading it I might postpone it until the end of the year.

 

[Steph’s]

Hi everyone.
Looking for a bit of advice/support for my partner.
He has suffered on/off with stomach issues over the last few years which was put down to anxiety related issues. He had a colonoscopy 4 years ago which found nothing. The last few months has been in an awful flare, painful cramping, diarrhoea and needing to go to toilet constantly. He has done stool sample and blood which came back fine according to dr. There has been blood and mucus in stool. His diet is very plain, just meat and rice and fish.
what should he be pushing for at the dr now as they are reluctant to send for any more testing.

 

[Blahblah93]

Hi everyone.
Looking for a bit of advice/support for my partner.
He has suffered on/off with stomach issues over the last few years which was put down to anxiety related issues. He had a colonoscopy 4 years ago which found nothing. The last few months has been in an awful flare, painful cramping, diarrhoea and needing to go to toilet constantly. He has done stool sample and blood which came back fine according to dr. There has been blood and mucus in stool. His diet is very plain, just meat and rice and fish.
what should he be pushing for at the dr now as they are reluctant to send for any more testing.

Try and get a capsule endoscopy. It goes through your entire digestive tract.

 

[Mycatoliver]

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

 

[Blahblah93]

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

I had the op about a week after the colonscopy. It wasn't too bad and I've dealt with alot worse with my crohns. It's painful but not as painful as it sounds if you know what I mean.
Fistulas are super common so just remember that these Dr's perform these procedures multiple times a week.
You will be fine and much more comfortable once its fixed.

 

[Steph’s]

Try and get a capsule endoscopy. It goes through your entire digestive tract.

Is this widely available on the NHS? They have prescribed Alverine citrate capsules but pain still frequent

 

[Blahblah93]

Is this widely available on the NHS? They have prescribed Alverine citrate capsules but pain still frequent

I have crohns disease and have had an endoscopy/colonoscopy and a capsule endoscopy all through the NHS. I think they offer capsule as a last resort if they can't find inflammation when using the other 2. Capsule goes through your entire digestive tract taking thousands of photos but I think it's quite expensive so not used as frequently as the other 2.

 

[Steph’s]

update - he is being referred to a gastroenterologist which could be 6 week to 6 months. We have had to cancel so many social events last minute as he can’t face the pain or the worry he can’t be near a toilet in time.
just awful.

 

[Hello Kitty]

Does anyone suffer with recurrent UTI's with IBD? I have Crohn's and just had my 4th UTI this year. I've read it's common with IBD. If so, other than the usual 3 day antibiotic course, have you been offered anything else?