Entocort weight gain and bloating

[Clairegard1979]

Hi

I have been on entocort since April, i have crohns in the terminal ileum. It seemed to start to help but for about 3 weeks I seem to have my symptoms returning. I went on holiday and gained half a stone in two weeks! Now finding it very hard to shift it, harder than normal anyway. Plus my stomach looks so bloated :-( has anyone else experienced this? Also getting bruising and dry skin. I feel so down and wonder why I'm bothering if it's not helping anyway!

 

[Hattie95]

Hey! I've been on Entocort since 20th May and I kind of agree that it's not really doing anything. I also have my Crohn's in my terminal ileum. I lost a lot of weight and hovered at my lowest for about a month but my weight has suddenly increased in a week or two. I'm also wondering if it's due to the Entocort. Completely agree on the stomach, it feels like my skin is being stretched from the bloating sometimes. My lips are really dry and a bruise takes weeks to go plus I bruise much more easily. We've just got to hang in there I guess, let me know what happens!

 

[Clairegard1979]

Hey! I've been on Entocort since 20th May and I kind of agree that it's not really doing anything. I also have my Crohn's in my terminal ileum. I lost a lot of weight and hovered at my lowest for about a month but my weight has suddenly increased in a week or two. I'm also wondering if it's due to the Entocort. Completely agree on the stomach, it feels like my skin is being stretched from the bloating sometimes. My lips are really dry and a bruise takes weeks to go plus I bruise much more easily. We've just got to hang in there I guess, let me know what happens!

Thanks hattie, nice to know I'm not the only one feeling like this! Also I have noticed yesterday some dark facial hair on the side of my face which I'm sure wasn't there before! I've got my next appointment on 22nd of this month so I'll see what he says. Just wish could go on a medication that works without horrible side effects. Actually I probably wouldn't mind the side effects so much if it helped the crohns! Have you been on any other medication before? I'm also on 4 pentasa a day and tried predisolone but didn't work either once I decreased the dose....

 

[Griz3]

Hi Guys,

This is my first post on here, I saw this question and it encouraged me to make an account. I have been going through the same things as you both, I was also just on vacation for two weeks and since I've been back I have been nonstop bloated, where it feels like the skin is stretching, so uncomfortable. Usually my bloating dies down after a bit, but it has been nonstop morning and night. I have been on Entocort for over a year now and just recently started having these symptoms. I also have inflammation in my terminal ileum and gained random weight after the vacation. Which I only found strange because I have had crohns for many years, never gained weight and suddenly I am ten pounds heavier and extremely bloated. I am just a bit concerned but it is reassuring hearing that you guys are having similar experiences.

Danielle

 

[AJC - Australia]

i went through this too…..bloating. was on entocort for years. the bloating seemed to come and go, but when it was bad, felt like i had a balloon of air inside me and was pretty uncomfortable. Would take dozens of huge farts to clear it, i would drink coffee to clear it and never drank coffee at other times, but it seemed to work.
weight gain is commong on entocort…..it, i think, has as light fluid retention thing going on, where your cells hold a bit of fluid, more than normal?
i always put it down to the crappy food that entocort would make you want to eat.

If you are not in serious pain - all these minor side effects are just (sadly) par for the course of having crohns.

good luck getting off entocort, it isnt good long term.

 

[Clairegard1979]

Did the entocort work for you guys though? I didn't realise you could be on it for that long!

 

[AJC - Australia]

it worked, in as much as it suppressed they symptoms….but it definitely is not a long term therapy…..it thins your bones, amoung other things….changes your mood/personality….not cool.

 

[Clairegard1979]

it worked, in as much as it suppressed they symptoms….but it definitely is not a long term therapy…..it thins your bones, amoung other things….changes your mood/personality….not cool.

How long did it take to work for you? I have been on it since April but still having some "bad" days. I think the next option to try is immunosuppressants or surgery... Neither of which I'm keen on! But fed up feeling rubbish all the time as well, it's like a viscous circle!

 

[MsGiggles]

Hi Guys,

My first day here today !

I have been on Entocort for the past year, I was originially on 9mg per day and we have been up and down with that dose for the past year. I am also on Folic Acid, Nexium and Colfac occassionally.

This, in my opinion, isn't a sustainable solution - I have been having some really crappy days and my GP has said to increase my dose. I haven't been increasing as I know that increasing the dose is not the answer. It hides the symptoms granted but doesn't do anything else. When I begin to taper and come down in dose, all the symptoms come back. I am waiting for another while so I will have a comprehensive study done for Doc so he can see that Entocort is not the answer !

I also have a savage appetite at some times and I CANNOT stop eating, then other times I have none at all ! I also have noticed some darker facial hair than normal and can contribuate it all to the Entocort.

I am just getting on with it for the moment, but hoping they can find alternative treatment as I do not want to be on this drug forever !

:ybatty:

 

[MyEnemy52]

Hello,
I'm new here, not new to Crohn's unfortunately, I was just prescribed Entocort 7/8/2015 and took my first dose the mourning of 7/9/2015 with food and 10 to 15 minutes later had pretty bad pain like the medicine caused a flare up, I threw up 2 times within the hour and the pain subsided around 3 hours later, of course my abdomin was sore the rest of the day and didn't eat until the next day, has this happened to anyone, the pain directly after taking your dose, I haven't taken it since, I'm a little scared too. Thanks.

 

[Hattie95]

No I haven't had this, sorry I can't help. Although, I was told to take mine before food, not sure if that might have anything to do with it, but perhaps it's something you could try?? Good luck, hope you find a solution!

 

[MyEnemy52]

Thanks for the advice, I'll try doing that within the next couple of days when I build the nerve up!

 

[Hattie95]

Great! At least like that if you have a reaction again, you can tell the doctor that you tried taking it in different ways and so that's not the reason. Good luck, really hope it helps

 

[Clairegard1979]

Great! At least like that if you have a reaction again, you can tell the doctor that you tried taking it in different ways and so that's not the reason. Good luck, really hope it helps

I have also been advised to take the tablets 30 mins -1 hour before eating in the mornings. They seemed to start to help but now I feel exactly the same as before I started them arrghh so annoying! Just want to find something to control my symptoms. I haven't been sick after taking them but quite often feel nauseous but this could just be the crohns as I used to feel like this before getting diagnosed...

 

[MyEnemy52]

Thanks for the replies, I took them this mourning before I ate and seemed to be O.K, a few sharp pains and a little nauseous but went away fast, lets see what happens tomorrow mourning, what a thing to have to live with, only us Crohnites know!

 

[Clairegard1979]

Hey everyone so I went back to the hospital today and the doctor has decided to take me off the steroids and I will have an operation instead... Because where my crohns is in a quite contained area and the meds haven't been helping, he now thinks this is the best option and it can be done by keyhole surgery. I am kinda relieved no more steroids hopefully but also a bit nervous about the op! Got to have mri scan next then go from there.

 

[AJC - Australia]

hey claire, i took entocort for years…like 8 years….had to get off it because it was thinning my bones. It worked for those years, but i still had crappy days and still have crappy days now, on infliximab…i think having crappy days is, quite simply, par for the course with Crohns. The only time i had surgery (3 times) was when i could not eat food, as the food was getting stuck at the site (stricture)….every time you have surgery it affects you for life….that is how it appears to me, anyway. The first time i had surgery, then needed b12 every 3 months forever….the second surgery, problems with bile salts and now take questran with every meal…..if you can keep the gut, do try, you never know - in 6 months you might have recovered enough to fight on. Then again, you might just be over it and want a quick fix…and surgery can be a quick fix, but generally speaking the crohns comes back again ---> BIG FROWN. The best advice i can give is to love the entocort, take them tablets with your own belief and blessing, eat well, be as stress free as possible, love your tummy - give it love, it needs your love to heal….breath, yoga, stretch….exercise…..find a drug that can slow the crohns down and try and be on some sort of drug if you have surgery, because the stats show if you are on a maintenance drug you are more chance of remission after the surgery…..good luck and remember, you are not alone.

 

[AJC - Australia]

let us know the results of the MRI scan Claire...

 

[Clairegard1979]

Thanks for the advice. To be honest I've been suffering with it for so long although only officially diagnosed in December, I do just want that quick fix! It's affecting my every day life. I don't feel the doctor would recommend it if he didn't think it was suitable for me and the other meds haven't helped. I am still on pentasa for now, not sure if that will continue if I have the op.... Will let u know, thanks again I wish I could be as positive as you and have your outlook

 

[AJC - Australia]

good luck claire! HEY< i write from a place of hindsight…when i was 18 i was desperate and again when i was 25, then again aged 30…i wouldnt have minded what they did, i was just so sick i didnt care about anything…..thankfully, that has changed now i am 39 and have two beautiful kids. SO, hold hope.