My feed

to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune disease

IBD & weight loss

23 replies

WeArnottamused · 12/02/2020 15:59

DS was diagnosed with IBD in May 19. He’s been in & out of hospital a couple of times is seeing the IBD nurse fairly regularly (8 weekly). His IBD is still unstable, he’s booked in for an urgent sigmoidoscopy this week, to see if current symptoms are a flare up or his bowel just misbehaving. Pain on eating, loss of appetite, vomiting after eating etc

On top of all this he’s lost 8kg since November. Anyone have experience with IBD & weight loss?

Anything I should be asking or looking into?

OP posts:
BobbinThreadbare123 · 12/02/2020 16:09

Yes. When I'm in a flare I drop a lot of weight. I'm 5ft 7 and look good at 65-70 kg. In a flare I've dropped to about 53 kg before. It comes back! Steroids to build you up = scoffing!

16fairies · 13/02/2020 05:25

I have lots of experience with IBD and weight loss. Still struggling to get weight on my dc.
What drugs is your dc on? We found that azathioprine was suppressing appetite, now on biological drugs but appetite still not great.
My dc has fortisip prescribed but hates drinking them!
My dc is still not considered in remission (signs of active disease) and until this happens, it’s a battle to keep weight on.
I let dc eat pretty much anything, lots of high calorie foods but it makes little difference. Our IBD nurse told us that once the Crohn’s is under control the appetites will return, we’re 2 years down the line and still trying to achieve remission.

WeArnottamused · 13/02/2020 12:43

Bobbin, DS is 5.11, and as of yesterday weighs 53kg, he looks very, very thin, he’s almost skeletal

16 fairies he’s on Azathioprine, I wonder if that is not helping the appetite, he’s also on Octasa. Yesterday IBD nurse prescribed Ensure, so hoping they help. Back in Jan she referred to dietician, but appt not till mid April

Consultant told him to eat as much as he likes of anything he wants. Trouble is at the moment he doesn’t want to eat.

We are a little way behind you, in that he’s not been diagnosed a year yet, but definitely not in remission either. Do you mind me asking how old your dc is? Mines 21 & struggling mentally with the whole diagnosis

OP posts:
16fairies · 13/02/2020 15:18

My dc is 14 and hates the diagnosis and everything involved with it.

Ensure will definitely help I would think. I’m sure the fortisip would help my dc but consultant wants dc to have 3 a day but i’m lucky if I can get dc to drink 1.

Trouble is, dc might put a little weight on but then will pick up a bug (due to low immunity) and we’re back to square one.

Dc also looks skeletal so I understand your worry. We found azathioprine really wasn’t helping, lowering white blood cell count alongside suppressing appetite.

Consultant has said to eat anything but like your dc, doesn’t feel hungry very often. I could offer 20 Mars bars and dc would still only eat half of one as just doesn’t want to eat.

I’m finding it’s a very tough disease to get on top of.

BobbinThreadbare123 · 13/02/2020 19:07

Azathioprine is vile. It made me puke all the time so I was swapped to mercaptopurine. Might be worth a mention.
I also will drink those children's build up milkshakes if I am struggling to eat.

WeArnottamused · 13/02/2020 21:16

I’ve tried to post a reply twice now & managed to delete it, so hoping 3rd time lucky.

Had urgent sigmoidoscopy this afternoon, which has shown the same level of inflammation as the last one 5 months ago.

Saw IBD nurse afterwards, as DS is on max dose of Octasa & Azathioprine she seems to think next step is Adalimumab or infliximab. The plan at the moment is to discuss results with consultant as to where next. Suggested we research them so we have at least a knowledge before of what each entails.
Any experience of either of these?

I will ask about the mercaptopurine, see if that’s an alternative to the Azathioprine.

This whole thing is a nightmare from start to finish, DS is really struggling mentally & physically. I guess remission seems so, so far away.

Thank you both for your support

OP posts:
TARSCOUT · 13/02/2020 23:28

Crohns sufferer for 19 years now. For me weight loss major flag to flaring. Took me a good few years to get meds right and to achieve remission. Flared on and off for years. Steroids worked fabulously for many years to get out of flare and great to build up appetite. Had a fistula cured with infliximab. Started humira about 6 years ago but had to stop two years ago as had anal tumour. Now purely on sulphazalazine as all the good meds are.contra indicators for cancer. Did humira give me cancer?.Possibly. Would I take it again if I had a choice? Definitely. On plus side apart from an abscess no operations yet for crohns. DDIS has had crohns for about 28 years now, lots of ops mainly at beginning as still rare then. Friend diagnosed 3 years agi and has had stoma now for 1 year. There is no rhyme or reason, no two people have the same experiences. It isn't easy but you will get there.

16fairies · 14/02/2020 05:42

Dc has been on infliximab for almost a year now. 8 week infusions. The side effects sound incredibly worrying but we really didn’t have any other choice. Be assured if he does go on infliximab they do lots of checks first to ensure he is suitable and blood tests etc throughout the treatment to make sure it remains safe and suitable.

It has helped my dc, where everything else had failed and brought inflammation levels down. However, after almost a year, we’ve just found out inflammation levels are high (lots lower than when first diagnosed but still too high). Dc will be having endoscopy and colonoscopy to find where the active disease is and then probably increasing the frequency of infusions.

It’s disappointing as we hoped dc was heading for remission but from my experience, the more damage there is at diagnosis, the harder it is to get on top of the disease. It sounds like your dc might be similar. Even if infliximab is not suitable for him, there are other biologics to try.

I bet you are just like me and wish you could have the disease instead of dc. 💐 for you, it’s a tough road but we will get our dc’s well again. Our consultant is excellent, I hope your dc has a good one too?

BobbinThreadbare123 · 14/02/2020 12:29

I've had the adalimumab, by injection at home rather than transfusion. Worked really well.

WeArnottamused · 15/02/2020 12:38

Consultant wants DS off the Octasa, (mathalazine) & onto Osalazine, we turned up at hospital pharmacy to collect new meds to be told we don’t stock this. So not sure what will happen there, IBD nurse said they would try to sort it ASAP.

The IBD nurse said the Consultant is recommending infliximab, DS seems to trust the Consultant, he knows what he’s talking about & he’s been very good at taking time, reassuring & answering questions, So I think we’ll be going with the consultant

We have the weekend to think it over, and 16faries you’re right the side effects look bloody awful particularly the c-word ones, DS has ASD, chances are he’s going to struggle with them, but I’m not sure he has much choice, in order for things to improve (fingers crossed) & he really can’t continue the way he is going. Ugh! Bloody awful disease, & yes I really wish I could take it from him

tarscout thank you, I’m sorry to read what you’ve been through, really hope you are doing well now, do you mind me asking how are you doing just on the sulphazalazine? I don’t want to go anywhere near the thought of him having to go down the surgery route, he’s desperately trying to avoid everything that’s going on with the IBD as it is.

bobbin DS & I had thought the injections might have been easier. I’m glad that it worked really well for you, hope you’re still doing well.

OP posts:
BobbinThreadbare123 · 16/02/2020 15:06

Yes, I have managed to keep a full time job (sometimes I don't know how) and couldn't justify an entire day out for an infusion on the reg, so went for the injections instead. I'm very stable at the mo and have been for some time. I've had patches in the past where nothing seemed to work and then a combo of things pulled me round. But mine was diagnosed when I was in my mid 20s so I didn't have my mum to help me out!

Whoopsmahoot · 20/02/2020 22:55

You have my sympathy, my daughter has struggled with IBD for the last 18 months. Turns out the Octasa was actually making the IBD worse, the side effects were imitating symptoms of a flare. It is a horrible horrible disease and watching my daughter go through this has nearly broken me.

WeArnottamused · 21/02/2020 00:08

Whoops, thanks for your reply, hope your daughter is doing ok, did they manage to find another oral medication that has helped, or is she doing the biological’s? I really hope they have found something that’s working for her.

DS has his first infusion booked for midweek next week, so now to trying to keep him bubble wrapped for the next year

OP posts:
SingleSidedShoulderShrug · 21/02/2020 00:41

I'm on infliximab. It's the only thing that seems to work for me. Took me out of a flare in 8 weeks. Absolutely amazing

Whoopsmahoot · 21/02/2020 06:24

It goes against anything I’ve ever read onIBD but she’s on nothing at the moment. Took 12 weeks of steroids to get into remission and she’s stayed there. Put on 10kg in a short space of time but she’s had 6 months of hell on the octasa due to its side effects. Just waiting 🤞 and hoping she stays in remission without meds. She’s been left with chronic fatigue and it’s going to take a very long time to get back to normality She went undiagnosed for 5 years with “gentle” symptoms before loosing a massive amount of weight and passing blood. It’s a waiting game at the moment. The octasa caused liver problems too. Don’t give up - there are lots of meds out there and what I have learned is that no 2 patients have the same symptoms and everyone needs their own approach. But hassle and keep asking consultants and drs questions. I wish I had hassled more 4 months ago but I assumed the drs knew what the side effects of octasa were. We had 5 hospital admissions in 12 months. Sounds daft but when the abdominal pain was bad- jelly babies or chewitts - the quick hit of sugar seemed to help somehow! It’s a long slow road and 13 months after first proper diagnosis she has been “healthy “ for 2 months. I really wish you well - it is torture watching them sometimes and all you want to do all the time is keep asking have you been to the loo? How’s the pain? Is there blood? 🙄 It really is an awful disease that no one really talks about.

Toomboom · 21/02/2020 06:40

My son was diagnosed with crohns when he was 8. He is now 19. He was on Azathioprine from the start. He had a few minor flare ups, but these were managed with modulen.
At 13 all his symptoms returned. He lost 16kg. At one point he was only eating 200 calories a day. He was started on steroids and again modulen. But he still lost weight. At this point he also hadn't started puberty and wasn't growing.

He ended up in hospital for 3 weeks and had an emergency colonoscopy and a pill camera test. It was found he now had crohns in his small bowel as well as his large bowel.
Scopes in themselves don't go as far as the small bowel, so the pill cam is needed.

He was then put onto infliximab. Within a year of this he was going through puberty and had grown 8 inches! Infliximab has been a life saver for him. He has now been on it for almost 6 years and doing really well.

PM me if you want to chat. Do you use facebook? Look up UK parents of kids with IBD. It is a really helpful, supportive group.

mrshoho · 21/02/2020 14:40

my husband has been diagnosed with crohns in the last year after dramatic weight loss and other symptoms. He seems to have had so many tests; endoscopy, colonoscopy, the camera pill, MRI, CT, XRay. He was put on a course of steroids last summer and they helped but as soon as he stopped them the symptoms all returned. He was on azathioprine but had to stop due to liver problems. He was again put back on steroids and bounced back with good weight gain but is now on the smallest tapered amount. He's been having build up drinks but as he also has type 1 diabetes he really struggles controlling his levels. Today he had his first Adalimumab injections (4 of them!) and I'm on tenderhooks just hoping they will work. He has managed to stay working full time but it's bloody hard and many times he's felt like giving up.

Flowers to all of you suffering or caring for someone with this awful condition.

WeArnottamused · 22/02/2020 22:15

Thank you for your replies, Whoops lovely to read that your dd isn’t taking meds & is staying well, really hope that she can stay that way. I think DS is heading towards chronic fatigue. Does your DD have an official diagnosis of that? I was planning on discussing it with the Consultant at his next clinic appt

Toom, so far dc has had sigmoidoscopy on 4 different occasions, despite trying they haven’t yet managed the full colonoscopy, so he has an IBD ?UC diagnosis. They’ve done biopsies etc, have been treating him with various oral medications including steroids & IV steroids, but unfortunately the longest he’s felt reasonably ok, ie appetite returned etc, lasted 2 weeks. Really hoping the infliximab gives him some relief & he can start to build himself back up.
Thank you for suggesting the Facebook group, I will go have a look

Mrshoho, sorry to hear your husband is going through this too, I’m really hoping that the adalimumibab works for him, & he starts to feel better. DS stopped working full time after his last hospital stay, so now is doing 2 days a week, he enjoys what he does, mentally it’s good for him, but he is constantly exhausted.

Does anyone know roughly how long before we’ll know if the infliximab is working?

OP posts:
freddiethegreat · 26/02/2020 20:53

My son (16) has been on infliximab for a year and it is working absolute wonders - but he is having increasingly severe reactions to it every time as they put it in, even with pre-meds, slow delivery etc. It’s ok once the infusion is finished. Just started low dose Azathioprine to lower immunity enough to get the infliximab in & crossing everything madly!

freddiethegreat · 26/02/2020 20:54

Oh sorry, just seen your question. Infliximab seemed to work for us from day 1, but actually that must have been the steroids which he was still on. Once they established the infusions at 8 weeks, we gradually discontinued the steroids & have had no serious Crohn’s problems since.

AlannaOfTrebond · 29/02/2020 13:12

I've been having imfliximab infusions for a year now at 6 weekly intervals. I was diagnosed with UC last year and spent a week in hospital, iv steroids helped, but as soon as it went onto oral steroids it got worse again.

Within a few days of the first infusion I was dramatically better. Within a week I was doing 8 mile hikes (that may also have had something to do with the fact I was still tapering the steroids and bouncing off the walls!). I'm still doing really well now, long daily walks and going to the gym - I've never looked this healthy.

WeArnottamused · 29/02/2020 21:03

I think it was probably a daft question, it’s a bit like asking how long is a piece of string. Anyway first dose midweek, second week after next, so far so good, no adverse reactions.

Thank you

OP posts:

Don’t want to miss threads like this?


Sign up to our weekly round up and get all the best threads sent straight to your inbox!

Log in to update your newsletter preferences.

You've subscribed!

HummingHarp · 01/04/2020 02:41

I know this post is a bit old but I just wondered how your son was doing. I meant to comment on the thread originally but never got around to it Blush

UC fighter here for 15 years on azathioprine and oslazine permanently, with sporadic uses of prednisone to control flares.

Apart from slight thinning of my hair I haven’t had a problem with azathioprine, however it doesn’t seem to control my flares as well as it used to as they seem to attack with relish every few months Confused, which makes going to work challenging.

Fingers crossed the imfliximab gives him the relief he needs Flowers

Please create an account

To comment on this thread you need to create a Mumsnet account.