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Autoimmune disease

Colitis - Salofalk not suiting DH is that normal??

29 replies

itscomplicatedlife · 26/08/2021 22:37

Husbands been given Salofalk enema but it's making him go more than before he took it!! Is this normal, he's only tried it twice and has not taken to it well at all and wants to stop using it, is that normal and if so does it get better?? He's been so many times this evening since taking it and cannot get out of the bathroom 😰

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Rupertpenrysmistress · 26/08/2021 22:48

It could be that his bowel is so inflamed he can't retain it, in this case he may be better with suppositories or foam enemas. The bowel needs to be able to absorb the medication and if the wall of the bowel is inflamed it won't stay put. Does he have an IBD nurse to talk to? Is he currently in a flair or us it maintenance?

LoveFall · 26/08/2021 23:04

Is he taking it last thing when he is in bed and ready to go to sleep? Is he lying on his left side with his right knee bent up?

I used several different enemas including Salofalk. It is true that if your husband is in a bad flare his lower colon may be so inflamed it isn't able to retain it. It does feel a bit uncomfortable and I have had to really concentrate on listening to an audiobook or similar until it settles in.

It is not fun to have to use an enema but they can really work well. It is worth trying for a bit longer maybe. Make sure the applicator is high enough up.

I hope he feels better soon.

purplegirl13 · 26/08/2021 23:07

Agree with the other posters, if his flare is bad then it can take some time before he is able to retain the enema. Is it the foam enema he is using? Might also be worth getting a prescription for suppositories to try as well?

Does he have an ibd nurse to contact?

itscomplicatedlife · 27/08/2021 06:36

@Rupertpenrysmistress Thabk you! He's in a flare atm has been for about 9 days, he doesn't have an IBD nurse it's terrible, it took his cons and gp over a wk to even sort these meds out of which he was given this Salofalk enema foam which he hasn't taken too and wasn't given anything else except told to double his pentassa! No steroids which is what I said I think he needed mostly to begin with, he had to call 111 last night, waiting for call bk but managed convince hun try to sleep which he did from 11.30 until now so he's had a rest x x

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itscomplicatedlife · 27/08/2021 06:39

@LoveFall thank you! Yes it could be that his flares just really bad, yes he tried it just before bed but it just made it so much worse, I'll remind him on ensuring it's far enough in also but seems it could be fact the flare is so bad, he should be getting a calll bk about it today from 111 as he doesn't have an ibd nurse which is crazy! It took his cons and gp over a wk to even get back to him, he may need go to a&e today if it gets relaly bad x x

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itscomplicatedlife · 27/08/2021 06:42

@purplegirl13 yes I think so too, he hasn't got a nurse when is crazy, took them over a wk to sort this meds out but he was only given the enema and fold to double his pentassa and no steroids or suppositories given, they obv didn't realise how bad his flare was, just feel so bad for him he's so fed up of it, he's always taken such good care of himself which I'm so grateful for as that will help but it's not fair on him, it's hereditary he found out his nan had it also abs his nephew just got diagnosed also x x

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itscomplicatedlife · 27/08/2021 06:45

Thank you all so much! Will ensure he gets either suppositories or the steroids ASAP if it gets worse he'll have go to the a&e x x

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ninanora · 27/08/2021 06:46

Join the crohns and colitis page on Facebook, will get lots of good advice on there too :)

hedgehoglurker · 27/08/2021 07:07

If you are keen to try the suppositories, your pharmacist might be able to help - if no luck elsewhere.

It was a few years ago that I had a repeat prescription for the foam, but one time the pharmacist couldn't get it and asked if I wanted to try suppositories instead. I did, so they spoke to gp surgery to arrange a new prescription. I've been on the salofalk suppositories ever since, and eventually stopped taking the tablets as the suppositories work so effectively for me.

purplegirl13 · 27/08/2021 10:46

@itscomplicatedlife is this his first flare since diagnosis? It can be very overwhelming at the start and what works well for one person won't for another. It is best to try and use the enema when he is 'empty' otherwise the enema will very likely result in a trip (or 3!) to the bathroom. That's not to say he still might not retain if he's very inflammed. I do think trying to get him the salofalk supps will be a good call. It also might be worth trying another med instead of pentasa. If I recall correctly, I was on pentasa for about 6 months before I changed to something else.

how frequently is your husband going to the bathroom? Is he bleeding?

Rupertpenrysmistress · 27/08/2021 10:58

I hope your DH is feeling rested this morning. Do you know if your hospital has an IBD nurse? They are worth there weight in gold. Try to speak to the GP about starting steroids, after a week or two he will likely tolerate the enemas. GP can also change prescription and request suppositories. How long has he been diagnosed for? My DH was diagnosed nearly 10 years ago. I read up about the different medications available, I constantly phoned the hospital to speak to the consultant secretary who arranged a steroid prescription. I phoned the GP to request medication as I understood where his colitis was and what medication works in that area. My DH was to unwell to do this he lost 2 stone and was passing blood. The steroids worked quickly. My DH is now on anti TNF injections.

If he can get your DH to take some diorylite to replace what he is loosing that will really help, squash even is better than water. If he can eat make it bland and easy to digest so his bowel does not have extra work (chicken, white bread rice).
Is your DH passing blood? Contact consultant secretary and ask about IBD nurse they will know, ask for a steroid prescription if not phone and ask GP. NHS is awful at the moment no harm in asking for what you want.

Fwiw I am an NHS nurse specialising in bowel conditions and it is awful seeing DH in a flare. I also didn't realise how little I knew about IBD. IBD is still something most GP know little about that's what I made myself an expert. Let us know how he gets on.

purplegirl13 · 27/08/2021 11:31

I'd recommend a low residue diet for now, which I like to call the white/biege diet. I'm veggie so scrambled eggs on toast, mash, white rice with a bit of soy sauce and fried egg, banana's etc. Nothing with skins/seeds which can aggravate the colon especially when you are trying to promote healing.

I've had UC coming up to 11yrs now and I know what I need to do re meds/food etc at the start of a flare and also when I require steroids. I am lucky to have a great consultant who trusts my judgement and listens to what I need. My condition is very much self-managed with the support of my consultant/nurse.

itscomplicatedlife · 27/08/2021 21:14

@ninanora thank you I'll look out for that and join! 👍 x x

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itscomplicatedlife · 27/08/2021 21:17

@hedgehoglurker I think the suppositories would have been better for him he reckons he's def had an adverse reaction to that foam but it's so inflamed too so probably too much to start with but those I think are a better option for sure! X x

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LoveFall · 28/08/2021 02:25

Just to let you know the suppositories only work on inflammation very low down as they don't get medication any higher. I used them years ago when my disease was not as advanced.

I know a flare is awful after almost 40 years of this stinkin' disease. But I have been in remission for two years on Entyvio (vedolimumab) infusions. I just had one today. The world has really improved for IBD people with the new treatments. And they are using them earlier in the disease to spare steroids which is good.

Take care.

LoveFall · 28/08/2021 02:26

I forgot. Yes, "white" diet. No kale salads to say the least. Easily digested, low residue foods like eggs, white bread, potatoes, rice, chicken.

itscomplicatedlife · 28/08/2021 06:54

@Rupertpenrysmistress Sorry for the late reply such a busy wk! Thank you so much for the time on your reply and such helpful advice!! He was diag just under a year ago, he had terrible time not being able to stop going to the toilet and had a lot of blood and loaf abkit a stone in weight, he been on pentassa since. He app discussed steroids but refused unless he was desperate but wishes he had them written by his cons when he first saw him. He finally got a prescription and has the steroids along with the foam enema which he had a nightmare with but I think it's because his bowel was so inflamed as others have said, he's stopped that and doubled the pentassa.

I've advised him aboit the suppositories too, this is a great idea bur I'm not sure why he hasn't got any! I've advised he asked about these too as I think they'd do the job.

He is due to see his cons soon and again said to mention aboit IBD nurse as a few people have said this abs I agree it would be so helpful!

He's had another couple of issues also and we don't know if it's linked, but his entire thumb keeps swelling on the joint really badly at same time his bowels flared then it goes down and he's got a patch of red raised skin that almoat appears like psoriasis but without the white patches, could that be related??

Thank you so much again! X x x

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itscomplicatedlife · 28/08/2021 06:56

@purplegirl13 it's great to hear people managing with this 10+ yrs on, it's something I'm totally not clued up on and it's been a worry to see him struggle with this being once so fit and healthy and it just came out of nowhere. It's hard incorporating the diet in also with us all, but yes the white and beige diet seems to be best much as possible until things settle again. When yours settles can you manage a few more foods than the beige? X x x

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itscomplicatedlife · 28/08/2021 06:59

@LoveFall yes that's a point on the suppositories, app his issue is the area that connects the lower vowel to the other lowest outer bit, but I agree you're only gonna get those things so far 40 yrs I can imagine you've had some battles with this!! The Entyvio sounds very interesting!! I will mention that to hubby to pass on for discussion with his cons as that sounds like something that could help! Is that something quite new and is it used in flares or is it a new treatment to sort of prevent flares? Thanks a lot! X x x

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amillionmenonmars · 28/08/2021 07:48

My DH has Crohns. I wonder if his thumb being inflamed could be gout - my DH also suffers from this and I believe the two could be linked. He also has rashes/ spots/ itchy skin. He finds using duublebase cream helps.

It is interesting to read about food and the beige diet. Two things my DH can eat only in moderation are bananas and rice.

Rupertpenrysmistress · 28/08/2021 10:34

As IBD is an inflammatory disease it can cause arthritis, skin and joint problems too. As someone up thread has said treatment has moved along now for IBD. With what used to be considered last resort drugs now being offered if symptoms don't settle. My DH is doing well and the more you learn the easier it gets to treat.

ShinglesOuch · 28/08/2021 10:45

His swollen thumb could indeed be related. I have UC and also get bouts of inflammatory arthritis. (usually in my hip, which makes it very hard to get on and off a toilet - oh, the irony!)

How soon is his consultant appointment? If he's going more than say 5/6 times a day he really needs to talk to someone now. Ideally not the GP, but a specialist. IBD nurse would be perfect if your hospital has any.

I would call the hospital and either ask the switchboard if they have ibd nurses, or if they don't know or they don't have them, ask to be transferred to the gastro dept.

As it's BH weekend, if he's very poorly and struggling, I'd ask to speak to the gastro ward. They will be able to judge severity of symptoms and if an urgent intervention is required.

Ans please, please make it clear to DH that he must not downplay his symptoms. I am often guilty of this and then it all gets too much and I email the nurse begging for help. At which point the remedies are often much more complicated than they would have been if I'd given them a heads up earlier! (like having to be admitted for iv steroids)

I hope DH is feeling a bit better.

LoveFall · 28/08/2021 18:29

When I started Entyvio I was in a flare that just would not quit. I was taking prednisone. After a couple of months the Entyvio started working and I have not taken steroids since.

I am lucky to have an excellent GI specialist who is an expert on IBD. It makes a huge difference. When I first met him he joked I have two diseases, UC and prednisone.

For anyone in BC it is Dr. Brian Bressler at the IBD Center of BC in Vancouver. I worship him. He just totally gets it.

Entyvio is fairly new as in maybe 8 years or so. In Canada it is paid for by our healthcare system, which is good as it is scary expensive. There are other "biologics" such as inflixamab and some have generic versions now.

I don't have stats but I know they are going to biologics earlier now. I had way too much prednisone over my life. It works but has bad side effects.

I have been on pretty much all the older treatments, including Asacol. Salofalk, azathioprine etc etc.

Colitis is no fun. It has ruined many things for me and I struggled with work at times. I am retired now but had a high demand profession and running to the bathroom was to say the least difficult.

I still have some joint pain as Entyvio mostly treats the gut but I can live with it.

I really hope your husband gets better quickly.

LoveFall · 28/08/2021 18:32

I too tend to downplay symptoms and it has got me in trouble. The flare gets worse and it takes more to calm it.

I tend to tell myself it's just something I ate and many other theories but end up begging for prednisone so I can live my life.

pepperaunt · 01/09/2021 20:43

I found that Salofalk wouldn’t “stay in” during a flare. Oral steroids all the way!

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