Severe IBS flare ups or something else? I’m miserable here

[bagheera92]

in 2020 I began experiencing IBS symptoms. I had a colonoscopy which ruled out anything else and confirmed IBS.
i was prescribed mebeverine 3x a day before meals which seemed to help along with me eliminating my trigger foods.

i am now currently experiencing an IBS flare-up that is going into three weeks, beginning after I ate a fish bite. Previously, my flare-ups would only last hours to a few days, but they are now lasting weeks and becoming much more severe. A few months ago I had to go to hospital after 111 told me to because of the pain.

I have severe abdominal pain from my belly button downwards, which comes in waves like contractions. The pain feels very similar to labour pains and is so intense that it keeps me awake most of the night. When I have a bowel movement, I experience stabbing pain in the lower right side which makes me feel dizzy and faint. The bowel movements feel like passing razor blades or acid. I now bleed from my bum when I pass a bowel movement. I I have severe gas that wakes me in the night.

My eyelids are red and puffy and feel horrible and gritty Ive bought some eye drops for them . I have also started getting painful sores inside my lips that look like holes. (Not a cold sore)
I will attach a picture. Will need to wait for Mumsnet to approve it

Even foods which used to be safe now trigger symptoms. I am scared to eat due to the pain and losing weight. I am utterly miserable and exhausted all i want to do is sleep. I can’t remember the last time I was pain free. I’ve been back to the GP this week she gave me a lecture saying IBS can’t be cured but she’ll do bloods and calprotectin anyway.

the bloods came back today absolutely fine.
no calprotecin results yet.

im not asking anyone to Diagnose me, but has anyone experienced flare ups with IBS that have lasted longer and longer and got more severe ? If so any advice or recommendations on food ?

foods I can’t eat:
Red meat
Vegetables
Not to much fruit
nothing to high in fiber
Anything sour or salty or sweet (chocolate etc)
Can’t have caffeine
Anything to hot in temperatures
Anything Spicey
Nothing fried
No nuts or grains

Hopefully it isn't too long for the bipody results, do you know how many they took? Or where they took them from?

Did they see anything un the endoscopy?

The fullness in the right iliac tends to be appendicitis, colitis (which is like fullness/inflammation, it's quite unspecific as its found in IBS, an infection etc) or could be something else. Definitely ask him when you have the follow-up when you get bupsoy results. I'd try not to worry about whether nothing will be found or not (it's so hard when you just want answers) but it is all out of your control now so live your life and forgot about it as best you can.

The adenomyosis wouldn't be affecting that upper region as much, it is localised only to the uterus by definition and so can get full, bloating which may push somewhat on the bladder and so you need to pee more. It can cause cross sensation of nerves, especially when you have cramping etc so that can sometimes slightly hit nerves in your rectum, so can cause sensations of urgency with bowel movements, fullnesses, spams etc. But it shouldn't be and is unlikely causing the full severity of your bowel issues, as many start in the upper/middle GI region which it shouldn't be affecting. Though it is likely contributing to increased pain sensation, along with the bloating it may cause etc. Sorry if you have mentioned before, my brain fog is bad, but do you have treatment for the adenomyosis? From GP or gyne? Miren, contraception, tranexamic acid or northisterone?
Definitely again talk about it with your gastrology consultant etc, let him know the full picture when you meet him. Hopefully the results come in soon and you get answers so you can get a treatment pathway.

Yes so here where the biopsies were taken, the red X is the only spot of inflammation found. I’ve attached a image it probably needs approval

and adenmysosis wise it was diagnosed via a scan. I barely bleed each month but the pain is incredible then I pass clots the size of my palm.
GP has referred me to gynecologist as I can’t use hormonal contraceptive as it severely affects my mental health , the coil came out and I can’t use NSAIDs as they make my stomach issues worse. My husband had the snip aswell as we were out of contraceptive options and if he wants to have sex he can take some of the responsibility haha.
I have a app with gynea on November I was referred in July

Were the finds from 1-6 all normal or some normal and others not? Hopefully the results don't take too long, that is a small bit of inflammation but could indicate something. It's hard I sometimes feel like my body decides to be the best and least unwell when I'm at the doctors or having a scan. I once didn't take any meds etc before having a scan even though I was in a lot of pain, because I was thinking if I'm feeling it hopefully they’ll be able to see it.

Do you use tranexamic acid or northisterone? Definitely ask your GP to prescribe it as it can help with the clots massively as well. Also, something like topical vaginal progesterone could help as it barely impacts mood, etc, but would help with clots as an idea. If insertion is done well, the coil being localised leads to fewer other side effects. Gyne consultant could do it with an ultrasound, and they'll be way better at doing it well so it stays. You can also have a licodiane injection, numbing gel, diazapam if needed, etc, to relax it, and that takes a way a lot of the pain.

You could also use something like antispasmodics as they often relax gyne muscles as well, but I think you use them already for bowel things? Is there a lot of pain that you have with the adeno?

It's good you have an appointment soon. It will either be with a registrar or consultant and likely go through those options. Ablation is an option, but it doesn't deal with any pain and can lead to scar tissue, so if you don't bleed heavily now, it's probably better to avoid that. Obviously, hysterectomy is a cure as well.

What scan diagnosed it? A transvaginal ultrasound or MRI? Did they say what type of adenomyosis? There are two: focal which is more like a few small/medium blobs across the uterine muscles in different places, so there is normal tissue but then blobs (more bigger so small-medium) across the uterine muscle wall. Then there's diffuse, which is a very small sort of dots and spots of the adenomyosis (uterine lining in the uterine muscular wall) but across the majority of the muscle wall.

@TheLivelyViperi like chatting with you! You’re very knowledgeable haha.

so nothing back for the biopsies 1-6.
and that’s exactly how I feel. My body totally behaved itself for this camera.

gp gave me tranemexic acid for next months period to take for the clots, so I’m going to give that a go
in also taking codeine for the pain and that also helps with my bowel pain to.
I’ve told my GP there’s no way I will have contraception. I’ve had awful experiences and it’s really traumatized me. I know it’s a long shot but I’m hoping may consider a partial hysterectomy. I also have polycystic ovaries also.
The scan I had was just a normal on the pelvis. But i was expecting transvaginal. I have the write up my GP received form the scan Ike copy and paste what was said.

Bladder - Bladder was empty
EndoCervix -Appears normal with normal blood flow observed .
Important: Ultrasound (including TVS) cannot assess the ecto-cervix or vaginal wall and a speculum examination may be indicated if this has not already been by done as part of the clinical examination.
Uterus - Anteverted uterus measures 72 x34 x44mm in diameter. Some suggestion of adenomyosis With hyperechoic foci in the myometrial/endometrial interface as well as A striated Shadowing seen from the anterior myometrium.
Endometrium - 9 mm

Oh thanks for the compliment, I guess I was very unknowledgeable when I became chronically ill (before I knew I was) and it definitely meant it took longer for diagnosis, and I was so confused. So then just hyperfixated on lots of science, in women's health and other things tbh. At an appointment the other month the registrar asked if I'm a doctor which I did take as the best compliment ever. Also I now do lots of menstrual health education in schools etc because of my own experiences so am constantly learning. Plus my sister is a med student so that helps though she's more interested in neuro than gynaecology.

That's good the codeine helps, honestly use it. People always used to fearmonger me (not HCP) but without it I wouldn't have done and wouldn't be doing the majority of my life, use it cautiously but I find people like you and me wait till the max before we use meds, so I'd encourage you do not suffer unnecessarily where the meds help, as I often have to remind myself.

I think if you see your GP soon ask them to do a transvaginal or an MRI as that should pick up the type of adenomyosis, definitely push for that. If you don't want the hormonal route that definitely makes sense, protect your mental health as well.

Hyperechoic foci means that there are small bright spots on the scan, so that us likely the endometrium infiltrating the muscular wall. The striated shadowing seen from the anterior myometrium is very common in adenomyosis. It means that there are radiating streaks of shadows extending from the lining of the uterus into the muscle. So the tissue then distorts the normal mucel fibres etc and so they show up as streaks. So you've definitely got adenomyosis at this point IMHO.

Definitely advocate for a partial hysterectomy if that's what you want, so you'd have ovaries removed as well and then keep the cervix? Or am I mistaken? Definitely push for it, it's your body, let them explain pros and cons as that's their job, but once you know and understand those, you make the informed choice which is best for you.

Im the opposite to you. My calprotectin is sky high - 1600 on last test - I have mild inflammation but they’re not diagnosing chrons cos I don’t have the classic symptoms. I’ve been tested up to my ears as well - camera both ends, CTs as colonoscopy found mural thickening - then was diagnosed w malrotated intestines. Small bowel no inflammation so it’s a mystery.
Keep pushing for answers - have you been advised to have a small bowel enterography or mri with contrast?

What symptoms do you have? They likely aren't diagnosing just because you don't have classic symptoms, the colonoscopy and other tests not finding anything is the main reason, it is hard to get a referral to gastro though from your GP without the classic symptoms. I do feel for you, so many investigations not finding the cause is very hard to deal with as you still have the symptoms and cannot get certain treatments without diagnosis. But surely malroayed intestines can get you treatment to stop inflammation?

Have you had a small bowel enterography?

Do you have any other conditions? Take any medications? If so which ones? It could be IBS, diverticulitis or it could be something linked to the Hepato-biliary, something like an autoimmune disease. Maybe see an endocrinologist and rheumatologist for further testing.

In terms of lower bowel I get really bad wind - not just regular farting, but if I can’t get it out cos I’m at the theatre, in polite company etc it comes out anyway (thankfully not smelly, but loud) and also some leakage if it goes on too long. Once I get to the loo it’s like an explosion of a massive wet fart is the only way I can describe it. This is why I was tested recently, but previously I was tested due to diarrhoea (3+ years ago) and it was over 2000 at the highest point. FIT tests always normal.
Got the referral from GP and had a small bowel enterography and the CT abdo prior to that, and endoscopy.
I want to know more from a knowledgeable GI as to whether my marathon is causing the large bowel inflammation and reflux - 1600 seems high for ‘mild’ inflammation and my CRP was raised in July. Waiting for new blood results now and retested calprotectin.

All biopsies came back clear.
im being referred to a dietician to look at a low fod map. Even though I already follow it. Thankyou to all of those that posted.

Have a look at bile acid malabsorption. See if the symptoms match.

Thankyou x

Sounds like Crohns to me. Yes, IBS cannot turn into Crohns, but also, you probably had that all along so what’s she talking about. Insight on a referral to someone who knows what they’re talking about.