IBD support thread

[AMillionPeopleCheering]

Come here for support and help. Patients and family welcome.

Oh that's annoying, with the mind gut connection that's increasingly understood now it's very short sighted not to have mental health support. And it's even more important when things go sideways, which is too often with IBD.

Fellow UC sufferer. I’ve cycled my way through most of the medications. Now on Humira. It was working so well they decided to take me off of it, leading to a huge flare. Now back on and resisting the NHS’ attempt move me from every 2 week injections to every 3. Some mornings I can’t leave the house unless I dose up on Imodium

As someone above said welcome to the club no one wants to be in 👋🏻

I'm 41 diagnosed with UC 10 years ago. Initial treatment was prednisolone (devils tic-tacs) + asacol, onto azathioprine within 4 months and infliximab after 11 months.

Got sepsis. Infliximab stopped working. Had an elective ileostomy in March 2017.

I always say in an ideal world I would not choose to have a stoma, but it's a thousand percent better than what I was dealing with before; I'd refuse to eat cos we'll if I didn't eat then I couldn't shit myself.

Before surgery, I would've quite happily gone to bed and not woken up the following morning 😞

If I can offer support to anyone facing surgery I'm happy to help.

Good thread- thanks.
Heading for 50 and have Indeterminate IBD. Pretty mild and I know how lucky I am for that! Diagnosed a few years ago and have had a couple of bad flares which were sorted with steroids. Can't tolerate mesalazine but have no symptoms right now, so no meds at the mo and I feel fine. I do permanently have mouth ulcers and the steroids were the only thing which ever got rid of them, so I'd quite like any meds which do that!

Please could you tell me if you can eat whatever you want now?

How often do you change your bag?

Can you go outside an live a normal life now? X

@Bringonthesunforthewashing hi lovely

There are some things I do have to avoid as they can cause blockages, for me it's nuts (I can still eat a few just not large quantities - peanuts are the worst) raw / not cooked well carrots. I have to really chew other foods like mushrooms or olives. There are probably things I shouldn't have, but I love food and after 3 years of being very restricted I'll take calculated risks now.

I had the surgery on a Monday and was home on the Friday. 8 weeks later I was on the fastest rollercoaster in Europe.

One of the main reasons for me pushing for surgery rather than trying other meds was that I was getting married and I didn't want to be worried about shitting myself as I said my vows.
My consultant said that I could try other meds but they couldn't say how long they would work for, so it would just be kicking the can down the road so to speak.

My stoma is very small and mostly sits flush to the skin, so I change my bag just before I go to bed. This usually lets me get a good 6 / 7 hours before it needs emptying. Before I was getting up 10 - 20 times a night to go to the loo.
I don't have to change every day but this works best for me as it helps avoid leaks. I know some people that can get 3-4 days.
I have to empty it 5/6 times a day at most; unless I've picked up a bug.

Since having it, I've learned to swim, I'm doing couch to 5k (for the 2nd time).

Getting a stoma wasn't the end of the world, it was a new beginning.

Hi all. I was diagnosed with Crohn’s in my teens, now early 40s. Managed with different medications until March this year when I had surgery to remove my terminal ileum. All went well except I developed Ileus afterwards and had to have an NG tube for a bit, but now fully recovered. I still seem to be having some symptoms following the surgery which is a bit concerning, but glad I got it done now rather than waiting for it to become an emergency due to bowel obstruction or similar. Really interested to hear about everyone else’s experiences.

My son is currently being investigated for IBD.
We have a meeting with the paediatrician tomorrow to go through his blood test/calprotectin results and come up with a plan for what happens next. I presume a colonoscopy and maybe an MRI?

I was also wondering, if it is IBD, do you have to take medication all the time or is it just if
You're having a flare?

@Waggily If IBD is confirmed by a colonoscopy/ biopsy, you will be given a treatment plan. Nowadays the first meds are often EEN to get inflammation under control while they work out the best plan going forward.
Medication is usually for life to keep symptoms under control, with adjustments along the way, and often a change in meds at times.

Flare up's can happen at any time, even with medication. My son has had many flare up's over the years. His have often been treated with steroids and modulen [ EEN ]

Good luck with the appointment.

I've been told by my consultant that I will be taking medication for life, even though I've been in remission for several years now with just the occasional blip. IBD comes with an increased risk of bowel cancer and the med I'm on (mesalazine - pentasa) helps to guard against that, so it's safer to stay on it and have regular blood tests. It's just part of my morning routine now and so far I've had no side effects from it.

@Waggily - best of luck to your son. He will probably have the joy of a colonoscopy next to see exactly what's what.

My 11yo son was diagnosed with Crohn's Disease last year. He's on biweekly adalimumab injections which seem to be keeping him stable, but I am noticing a drop in appetite, so keeping an eye on that (and watching out for other changes) because it was one of his big symptoms when diagnosed. He also has severe OCD and sometimes it's difficult to see which condition is responsible for his tricky relationship with food, as he tends to go through trends of eating certain things he's comfortable with.

All the very best for your son @Waggily. I hope he doesn't join this club, but if he does, there are many, many treatments. The 6 week Modulen diet my son was put on initially was an absolute miracle worker for his low weight, combined with the biologics injections.

Last infliximab for dd today
Likely next miricuizimab
that's the fourth one we're trying
we are both a bit tired of the merry go round of treatments at the moment tbh

Hobnobswantshernameback - is nothing working for your DD? Or are the side effects too bad?

Inflicximab had helped but her calpro remains elevated and she is still moderately symptomatic.
Adilimumab and vedo did nothing.
Azo and mesallezine did nothing,
Steroids sort her but obviously she can't keep being on steroids.
Her new consultant isn't happy with how symptomatic she remains despite good drug levels and no antibodies
Hence the change

Can anyone help? I was diagnosed with proctitis 6 years ago, after a FC>6000 and colonoscopy. I have been on asacol and pentasa. Periodic flares, but nothing that couldn't be coped with.

Two-three months ago, I started to feel a flare. I was getting lots of mucous and blood flecks in the toilet. Lots of tenesmus. I didn't do anything about it. It's got to the stage that I'm finding it really hard to pass stools because my bowels feel clamped. What I do pass is soft but thin. I spoke to a doctor on 11/06/24 and he told me to call the IBD line.

The IBD nurse changed my meds to Octasa and included budesonide foam enemas. But my fecal calprotectin came back at just 26. She suggested laxido 2x per night for 3 nights. I've taken 2 doses and passed very little (but soft) stool. I've had an abdominal x-ray which apparently shows 'fecal load' but they didn't say whether proximal or distal.

Will it pass? My diet is good, I drink soo much, but I can't seem to shift my stools!

Lougle - sorry to hear you are struggling. I don't have enough experience to help, but maybe someone will be along soon who can.

Lougle - I know people with small bowel Crohn's often don't get the high calpro numbers, is that possible?

I have small bowel Crohns and it's a small bowel MRI which can often be more conclusive with this type of Crohns. In fact I have one this Sunday. My calprotectin levels have been low for the last year but my gastroenterologist agrees I am suffering with symptoms so offered me either another colonoscopy or small bowel MRI. Can you ask if they would agree to a small bowel MRI for you?

@StomaAndMe thank you so much for explaining all of that to me.

Its good to hear about someone’s experience in real life.

I am so pleased you are doing so much better, that is great news!!

I bet you feel like you can finally start living your life now without so many restrictions x

My son has UC and is only 15 I find it all very terrifying and get very upset even just talking about it to anyone - as a result no one really knows apart from close friends! We are so lucky he is doing so well as has had it since he was 9 (diognosed at 11) really doesn't effect him
he is active, growing nicely after some delay and looks a picture of health!

I know it won't always be like this and the unknown is what terrifies me as I am naturally a negative thinker

Remmy123 my heart goes out to you and your son, but try not to worry too much about the future (easier said than done, I know!).

I suffer from UC, and while there have been ups and downs, I have been in remission for the last seven years (thanks to immune suppressants). I recognise I was fortunate enough to not develop it until my early 30s, but my dad was diagnosed as a teen. He is in his 80s now and has led a full and active life (including fathering five children!).

There are treatments available now which were not available to my dad, and research is improving knowledge. Did you know major research findings were published just in the last month: Major Cause of Inflammatory Bowel Disease Found It is not beyond the realms of impossibility that a cure may be developed in your son's lifetime (well, we can hope!)

I'm glad your son is doing well - long may it continue!

Thanks @ApplePippa its great to hear more positive stories as when I google it it doesn't sound great

glad you are also in remission xx

For younger people this account on insta can be helpful

Can I follow up on my post? I might also start a thread in general health.

So for the last 2-3 months I felt like I had been having a flare of my IBD - flecks of blood and lots of mucous. Then pain (more on right side) and feeling like I wasn't passing bowel movements easily. I do have a small vaginal prolapse (undiagnosed because it goes away when I lay down for examination).

4 weeks ago, I called the IBD line and the IBD nurse prescribed budensonide, and changed my asacol for octasa, increasing the dose to a 'flare' dose. The mucous and bleeding stopped within days, but pain continued. Fecal Calprotectin showed a level of 26 - no flare at all. X ray showed 'fecal loading' so was prescribed laxido, and have been taking two per day since.

I'm found that once my stools were almost liquid, I was able to pass them. No problem. Big clear out. But if I try to reduce my laxido, then I find it almost impossible to pass stools again - I have to really strain and it feels like I'm pushing against something. It improves slightly if I push down to splint the prolapse, but even then, it's really hard to pass stools. I'm talking about even if they are toothpaste consistency. When I increase the laxido again so that my stools are liquid, I can pass them.

That isn't right, is it??

Calprotectin back today - 107!
It was 2100+ (they don't measure any higher) in March, before starting adalimubab.
Mini yay - and next one under 100, pretty please?