Colitis DH bad flare, 38yo - is this normal

[itscomplicatedlife]

My DH is 38 he was diagnosed with UColitis year ago after having a terrible need for the loo, it's back last 2 days, he takes pentassa, he looks terrible! We have a very demanding 2yo daughter who needs constant attention this is not helping, we have no family wanting to help, I take her out best I can half a day at wknds both days to give him a break. He been the toilet yest app over 12 times! Is this normal?? He needs to see his consultant ASAP but atm won't talk to me about it, I need to know, how serious can this get? And any tips to help him through this, how long can this flare go on for? Thanks a lot

It's different for everyone but a lot of people I talk to find flare ups are often stress and diet related. Without wanting to scare you 2 days would not be classed as a flare up in this household by any stretch of the imagination.

His GP can also help it doesn't need to be his consultant. Has he ever tried Salofalk as a step up from Pentassa?

However, whilst there are various medications out there the single biggest thing we have found that helps resolve flare ups is the sufferer following a Low FODMAP diet.

That basically means go lactose free, gluten free, no fizzy drinks, no onions, no mushrooms, no legumes, no salad no fruit with stones and limited caffeine/alcohol. There's other things too but they are the main ones.

It's a really miserable and restrictive diet but we have found sticking to it for a few weeks has far is better results than any medication. You basically have to forget about fruit and veg while you are on it , but there are some good lactose free options available and gluten free stuff if you can avoid ones where they have used pea protein.

Hi if its this bad it sounds like he may have to get some short term prednisolone steroids from his consultant. If it get s really bad he can go to A and E and they will most likely give him IV hydrocortisone.

Does he have a number for his IBD nurse? I’ve always found that the fastest route when in a flare. Unfortunately 12 times a day is not uncommon but he might need to try either steroids for a quick fix or different medication

@pastabest thank you for your reply, we does follow the diet pretty well that you've mentioned, we all do it but yes it's not easy, I'll mention aboit those other tablets to him and see if he can speak to the dr etc, Thx a lot x x

@Snowwhite83 thank you I didn't know that, just so worrying I'm not sure how on Earth this will affect his job he's worked so hard and now this has happened such a shame x

Thx all I will mention all this x x x

Hi - I'm a UC sufferer, I'm 37 and have had it nearly 10 years.

If he doesn't want to talk to you about it he could try looking at the chrons and colitis website and Facebook group. I found it so helpful to ask questions etc and it's private so fb friends can't see what you write.

Look to see if his hospital have an IBD nurse he can contact, if not he should go to his GP or failing that AnE so they can run some tests and give his department a bit of a nudge.

In my experience Pentasa is useless.

He may need some steroids like PP suggested.

It's best to get this flare nipped in the bud early before he ends up in hospital so he does need to speak to someone.

The worst I've been is in hosp for 2 weeks on steroid drip, going about 30 times and losing lots of blood.

Posted before I finished.

Flare times can vary, I'm currently in one that I can't get out of for over a year.

@Amichelle84 awww thank you for your reply this so helpful! He's quite quiet about it just feel really sorry for him, it's hereditary, he is 38 and found out last year, we think the stress of our baby caused it she was a terrible sleeper and was such an unsettled baby and still is to a degree which isn't helping at all! He's been about 12-14 times last couple days and yes the blood has been an issue before too. He's managed to get his Gp to email his consultant but been told could be a few days before they reply! Advised he call his cons Sec to push it along but I will certainly advise he go to A&E if it continues as I don't think he's aware of how bad it could get if it of course continues. His nephew was just recently diagnosed with this after his mum and dad split up, he is just 18. He hasn't app had a flare this bad since he was diag nearly a year ago, he takes pentessa daily and found it ok but useless atm and def needs these steroids fast!

Have you found your Uc has changed over the 10 yrs like stable or similar in how it is or worse? I don't know If it is different for everyone you see and trying to undertand it more. Thanks so much for the reply x x x

It's hard to know the cause of them isn't it but they do say stress. Maybe he can look to manage that and make sure he goes for a daily walk on his own or does a bit of exercise he enjoys doing.

Mines been really up and down since I was diagnosed. It took a long time for me to get proper help, it also took a long time to find the medicine that worked for me as I don't respond to a lot or oral steroids so always had to go in for steroid by drip.

Once I started a medicine called infliximab I would say I was symptom free for a year and a half before it stopped working. Then I was put on another which helped for about 6 months until I became pregnant and haven't managed to recover yet.

@Amichelle84 Honestly it's immensely helpful to hear your honest opinion and experience and I agree I think stress is a big factor! We had a lot go on when it started, he was being made redundent and was struggling to find a similar role but not half way across the country, we had the baby same time, then covid and I lost my mum just after baby was born and my dad had heart failure it put a lot of stress on to him it was an awful time for us all. We've never had so many things go wrong in such short space of time amongst a few other things too it was very difficult. We're def coming out of that whiz is a relief but our baby is the biggest stressor of them all, she is what's regarded aa a bit clingy and needs a lot of time and attention and has so much enegry, after a busy day he needs to rest but baby hasn't been going to bed until gone 8.30 most nights we recently moved her to the next nursery stage earlier and cut her nap down which has helped but only a bit as she's still managing to be the energiser bunny past 8.30! I think we will have to drop the nap next wk and nursery advised they don't think she needs it, tested it again this wknd and she managed just fine with an 8pm bedtime which was much better for us all 🥵

I hope you are managing ok with this with your baby?? I think stress is def something that seems to kick it off, his nephew was leaving school also when his parents split up, doesn't help it's hereditary but my DH went until he was 38 until he got diagnosed x x x

@Amichelle84 it's good to know also aboit the oral steroids as I didn't know this so if it doesn't help he knows he'll need to get the iV ones instead x x

That's a lot going on all at once.

Can definitely relate to the baby thing, I'm also due our 2nd in a few weeks so feeling exhausted.

How old is baby now? Our baby (he's 1 now) was a bit like that, so hyper in the eve. I couldn't cope any longer so put him on a day and sleep routine and we soon realised his hyper was was actually him being over tired. We dropped him to a short morning nap and a longer afternoon nap finishing no later than 3 and he'd at 7. It took a few nights of crying and going back and forth to the cot but honestly after a few days he'd be asleep by 7.30 and wakes about 6am.

Not saying that will work for you, but like you say you just have to try everything right.

One good thing about steroids is they give you a lot of energy and insomnia so hubby can do all the night wakes and you can sleep (semi joking).

@Amichelle84 My hubby do nihht wakings 🤣 oh he's useless at it honestly! I'm half dead honestly it's been crazy! Our DD is 2, she's got a mountain of energy like a boy, just crazy but we've cut her nap right down to 30 mins but I think we're going to get rid of it totally in a couple of wks time and see how that goes for a while.

Awww not long to go at all for you, such happy positive news!! 😃 my neighbor is due here in a few wks also, she has managed to do fast walks right up to now! I blew up with huge amounts of fluid from 5 months, by 7 months I could barely walk it was awful, she often goes thundering past our house at such speed! She's had a really easy pregnancy, every one is so different! We are debating whether to have another, I'm 37 this yr but still recovering from the awful lack of sleep we had with this one, I do think she's a rareity! She's almost been diagnosed with asthma which has kept us all up for this last year terrible rubbish on her chest, we just need more time to recover then think about it again in maybe 6 mths but my clock is ticking!!

He's had a better day today thankfully but still waiting to hear back about the steroids!! He reckons on first prescription he should be able to get them more easily next time, fingers crossed!

X x x x

Ah bless her! Yeah worth trying to cut it out, my sister has just done the same with her 2 year old. Good luck.

Glad hubby is feeling a bit better. I was admitted yesterday out of the blue for IV steroids. Hope I don't have to be in here too long, there's not enough midnight snacks!

Perhaps if hubby doesn't hear anything back by the end of the week he could email his consultants secretary, they are always really good at chasing them I've found.

My son has had crohns for 12 years. In my experience pentasa on it's own doesn't work. It is one of the milder medications to treat IBD. It sounds as though your husband needs to be on something stronger.
Flare ups can happen on a regular basis until they get onto the right medication, and even then flare ups can still occur, though sometimes not as bad. It took 5 years [ between age 8 - 13 ] to finally get the right meds for my son.

While you are waiting to see the consultant a GP can prescribe steroids.
Also as others have said, go to A&E if things get really bad.

I hope your DH is found better. Reiterating what others said, get the phone number / email address for the ibd nurse(s). They're the go team here rather than the consultant for my "is this normal / should I be worried questions?" And generally first port of call. Consultants I find are used as the escalation route and much harder to get a hold of.

Plus agree about the fb which can be helpful but also overwhelming depending on frame of mind so I do have to snooze it sometimes

Feeling not found!

@Amichelle84 Awww I hope you get out of there quick too!! If you get the snack attack you'll have to get someone to drop stuff in to you!!

I've been trying the sec number but no answer so far so annoying but we will keep trying, thanks so much again!!

He's been a bit off again this morning and in Manchester today, really hoping he manages ok

Take care and hope you get out real quick x x x

Just keep trying, it's exhausting but it will be worth it. If you really get nowhere you should contact PALS. What's the GP saying? They will be able to step in and do bloods etc too and prescribe steroids.

Good luck x

[quote itscomplicatedlife]@Amichelle84 Awww I hope you get out of there quick too!! If you get the snack attack you'll have to get someone to drop stuff in to you!!

I've been trying the sec number but no answer so far so annoying but we will keep trying, thanks so much again!!

He's been a bit off again this morning and in Manchester today, really hoping he manages ok

Take care and hope you get out real quick x x x [/quote]
Are there no specialist nurses? That's who I would be trying to track down. Good luck!

@Amichelle84 The Gp has been useless tbh! He passed them a letter from his Gp saying if he has a bad flare to prescribe a short course of predinsilone but the Gp said he didn't know which type or how much so has refused to prescribe until his consultant replies to him, he's still not heard back, so frustrating, he was also advised to call the Gp thu if no reply but they're closed on Thursdays!! 😣 asked OH about a ibd nurse, he said the surgery don't have one and his consultant he used through work's medicine ins hasn't got one either, we've both been trying get through to the Sec but both stuck on the line not getting through, it's so bad. I think once he gets his first course in writing he won't have this issue again. I've let him know about all these tips though and the other medication advice which should be a huge help in the future, luckily atm he hasn't got worse, be so glad when he finally gets these tablets though x x x

@PoloMintPatty apparently there isn't at our surgery it's really bad!! They're rubbish for appts also it's takes all morning to get through and his consultant doesn't have a one nurse either have asked him today couldn't believe it! So we're stuck now waiting on the consultant to reply to the dr with the med advice as Gp won't give him anything until he knows exactly what they advise, you'd think they'd at least give him a basic low dose it's better than nothing I think x x

[quote itscomplicatedlife]@PoloMintPatty apparently there isn't at our surgery it's really bad!! They're rubbish for appts also it's takes all morning to get through and his consultant doesn't have a one nurse either have asked him today couldn't believe it! So we're stuck now waiting on the consultant to reply to the dr with the med advice as Gp won't give him anything until he knows exactly what they advise, you'd think they'd at least give him a basic low dose it's better than nothing I think x x [/quote]
They're not generally based at the gp surgery. At least not in Scotland.

They're in the hospitals same as the consultants and part of the broader support team. Does that help or not at all? Maybe the Facebook page could help. There are so many people on there I'm sure you could find out more about what support is in your local area.

@Londonnight yes you're right apparently he said the pentsssa is for mild illness but I def think he's going to need a review, someone above suggested salofalk which I've told him about which is great so he can mention that 😃 everyone has been so helpful here it's been so reassuring it's been a horrible week! I'm ill also with flu I think had an abs banging headache for about 4 days now, feel like crap, our 2 yo isn't helping bringing so many bugs home but he also thinks his covid jab has knocked him off we've both felt terrible since we had it just over a wk ago 😳 x x