Any IBD tips for managing?

[hotcrossbunnies12]

I think I’ve got IBD. I have urgency issues, not unknown to have an accident. Often have an awful urgency and just pass mucus. Sometimes the mucus is bloody. I am extremely constipated. Often wake up with a sore stomach, sometimes it feels like there is a lump of some sorts in there. I went to the doctor who did a stool test and my calprotectin was 3000. I’m on the waiting list for gastro but in my area it says 8/10 people are seen within 31 weeks.

it’s getting to the point where im planning my outings based on how accessible the toilet is. I spend my time at work panicking about if I need to go during a meeting or something. It’s embarrassing and also uncomfortable. I don’t like sharing a bed with my partner anymore and he is unaware of these issues.

I just wondered if anybody could give me any tips that may help me manage until I see a doctor? I appreciate a doctor won’t be able to cure me but my quality of life is really decreasing due to the urgency to pass all this mucus.

That sounds awful - sorry you're going through this. Good you're being investigated.

Please tell your partner. If he's worth anything, he'll support you 💐

I’ve been in the same position ( with a calprotectin of 2000) - an urgent referral would be 10 months and then another wait for colonoscopy. I expedited this by contacting PALS who put me on the cancellation list for the first referral and then did the same for the colonoscopy referral after that initial outpatient appointment. Doing that meant I had both the appointment and colonoscopy within 3 months - but of course I had to be available at short notice.

Thank you @damekindness, that’s useful to know. Was there anything you said to PALS that you felt expedited it?

You do need to share with your partner. If he doesn't accept it, it's better to know sooner than later. You probably won't get better overnight - sorry!

The problem with trying to manage the IBD is that your results may be compromised.

I can only recommend trying to reduce things like seeds and leaves. (At the time I was eating lots of fruits like berries, smoothies with flaxseeds, tomato and spinach salads, as also trying to lose weight postpartum.)

Try to follow a fairly low fodmap or low residue diet for your comfort while waiting, presumably, for a colonoscopy.

Good luck!

I am so shocked at the wait time on the NHS. My DD was diagnosed almost three years ago. Luckily we had private cover so she was seen within 3 days of the GP calling with the test results and had a colonoscopy a couple of days after that. I hope you can keep on an even keel while you wait OP. The meds once you get them can keep things in check and you will get much better quickly.

Join the Crohns and Colitis Society. Its £15 a year and you get a Radar key plus a card that you can use to ask shops etc to use their loo.

When I'm in a flare I wear 2 pairs of pants with a pad esp if its mucus-y. With the broadest bit of the pad at the back. Quite often you can just dump the pad if its 'got it all' If not dump the pants as well.

Tell people at work you're being investigated for Crohns - it seems to be more recognised than IBD or UC. People understand its a gut thing.

Avoid trigger foods. I cut carbs when at my worst. You might be different.

Tell your partner. If hes bothered hes not a keeper anyway. You will get over being embarrassed surprisingly fast. And all your friends will rely on you to have scoped out the loos with a 5 mile radius.

Hope you get sorted real soon!

@hotcrossbunnies12 I think I just emailed and asked them how long I should expect to wait about 2 months after the referral was made. They contacted me (told me it was likely to be around 10 months) but offered the option to go on the cancellation list for the first appt ( it came through in 3 days!) and then after being referred for a colonoscopy I contacted the endoscopy dept and asked if they had the same sort of cancellation list - they did and offered one a week later.

btw while I was waiting my GP prescribed rectal Mesalazine suppositories which for me have worked really well.

Sympathies OP, I have Crohn's and am in the middle of a flare, just started some steroids. Some good advice above. I checked out low FODMAP foods though and there's a few I don't agree with - cucumber, lettuce, blueberries?! All trigger foods for me, but I suppose if you have constipation, they may not be. So just advising to proceed with care and keep a food diary, things that make you feel worse may be different than from other sufferers. The good news is that once you do get seen, the IBD clinics are pretty good at helping quickly when you do have a flare in the future.

This is really useful.
I'm on the waiting list for gastro. It seems it's a national problem. The waiting times on MyPlannedCare for my area are 23/43 weeks so I've no idea whether I'll be waiting 5 months or 10 months. And that's only for the initial consultation.

My symptoms started with upper abdominal pain after eating fat but have progressed to bowel issues including constipation/diarrhoea and mucus.
I'm going to try and ring the hospital to ask if they have a cancellation list.

I have UC and was diagnosed much more quickly because there was also blood in my stools. Did you also have a FIT test?
My flares don't seem to have any relationship to my diet or lifestyle, but mesalazine totally resolves so medication is what you need if it is IBD.
I would try to expedite the referral.
All the best.

So sorry for you, it’s sounds really difficult. I have Crohn’s 10 years now, and thanks to medication I’m normally flare free (I’m on infliximab infusions every 7 weeks).
I find marshmallows great for diarrhea, kinda of an instant relief. But if you are suffering from constipation it wouldn’t be the best.
i avoid all fruit veg and dairy (and coffee 😢) when I’m flaring. Extremely bland diet of chicken and rice.
that’s a shocking wait time for gastro. Hope you manage to get seen sooner