Recently diagnosed

Rose909

New Member

Joined : Jun 2016

Posts : 13

Posted 6/28/2016 9:05 AM (GMT -7)

Hi everyone. I have recently, only yesterday, been diagnosed with chron's disease. After 10 years of being dismissed by my G.P... so a little relieved I can now finally get treatment and look aftrr my.children how i want.to.....
Basically im jus wondering how long it.takes, with the steroids to start gaining weight again. I have become underweight for my height now. And i hate it. I am on.40mg of steroids a day. Reducing weekly. And obviously to relieve symptoms.

Any advice on this disease would be brilliant. Thankyou in advance xx

NiceCupOfTea

Elite Member

Joined : Jan 2010

Posts : 10718

Posted 6/28/2016 9:36 AM (GMT -7)

Sorry about that. I would find a new GP from now on, but tell your current GP what you think of his (or her) fobbing you off for 10 years before you leave.

You probably won't gain any weight from the steroids unless you are eating more. Not sure if you're in the UK, but if you are I'm guessing you'll have been put on a standard 8-week taper. I never gained weight from that. Had to be on steroids for several months before I started putting on weight through them.

Have you been put on any other medication besides steroids?

Dx Crohn's in June 2000. (Yay

)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP

Rose909

New Member

Joined : Jun 2016

Posts : 13

Posted 6/28/2016 12:13 PM (GMT -7)

Hi. Yes in the u.k..... ive lost so much weight i feel disgusting. I hoped ateroids would help :( i have been given anti inflammatorys and calcium. My appetite is non existant. Not through not wanting to eat. Im dying to haha. Just cant stomach it. Do you have any advice on weight gain? And how long until your symptoms died down?
Yes. New g.p. shes the one that referred me as urgent as soon as i saw her. Luckily. Or I would still be non the wiser today xx

NiceCupOfTea

Elite Member

Joined : Jan 2010

Posts : 10718

Posted 6/28/2016 12:31 PM (GMT -7)

I'm guessing the antiinflammatories are some type of mesalazine med, which is fairly useless for Crohn's. And steroids are only a temporary fix at best. When you next see your GI, ask about going on 6MP or azathioprine. If your Crohn's is considered severe, ask about biologics (Remicade or Humira). It's been ignored for 10 years, so I find it hard to believe mesalazine is going to be sufficient for it now.

Is it in the colon or small bowel, do you know?

Much like weight loss, weight gain is simple in theory, harder in practice. But it's all about the calories. If liquids are easier to get down, then go for those: it's relatively easy to pack hundreds of calories into one drink (full-fat yoghurt, milk, cream, peanut butter, bananas, olive oil, etc.) Alternatively, maybe your GP could prescribe you Fortisips, which are milkshake-type drinks. Not that nice, but if you chill them they're drinkable... There's a high calorie version, which is 300 calories in a 200ml bottle.

My symptoms never died down, except with lots of steroids. Only surgery worked for me in the end. But I was a pretty severe case - not that typical. Are the steroids working for you yet?

Also I'm glad you finally got a competent GP! The difference between a good and a bad one is astounding.

Dx Crohn's in June 2000. (Yay

Rose909

New Member

Joined : Jun 2016

Posts : 13

Posted 6/28/2016 12:46 PM (GMT -7)

Yes thats the one....oh gosh. Well i see the consultant again in 2 weeks and il definTely ask bout the ones you suggested.
Im moderately active it said...to be honest not a lot was said 2 me. I was still jus comin round from sedation so im still non the wiser really as to what anything is or how bad i am or where it was. I do know its in the colon. In 3 different sections.
I will definately try puttin things into drinks. Thats a great idea. Thanks. I asked my g.p today about aome drinks and she said no point as the steroids would soon work :( i will try the home stuff.
Surgery only worked for my cousin too who had it very bad i hope im not too severe. Im a bit scared as to anything bout it at the minute. Its all so new.
Only started 2 days ago but no changes as yet. Had a bad day today of feelin lousy. Hopefully pick up soon. Xx

Dikid

Veteran Member

Joined : May 2015

Posts : 2236

Posted 6/28/2016 7:55 PM (GMT -7)

agree with NCOT 5 ASA meds are not a good option for Crohns, they really do not work very well.
like mentioned start an immunomodulator or biologic
immunomodulators will take time to work but they should kick in by the time you are off of the pred

try making shakes to increase weight gain

sorry bout the diagnosis, but glad you will be able to get treatment (I was diagnosed with Crohns a week ago, but I was first misdiagnosed with UC over a year ago so not new to IBD)

21 year old female
Diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
librax and zofran as needed

Please excuse typos. Usually post from my phone.

Rose909

New Member

Joined : Jun 2016

Posts : 13

Posted 6/28/2016 11:22 PM (GMT -7)

Thankyou for your responses. I will definately try making some shakes. This is jus so painful and horrible. Today it a bad day already. Jus want to feel better. 6 months this flare up has been. My las one was only couple of months. Just wwnt to do normal things with my 3 children. Not be stuck in, round a blumin toilet all day 🙈

Amy C33

Regular Member

Joined : Apr 2016

Posts : 27

Posted 6/29/2016 5:02 AM (GMT -7)

Hi Rose
Welcome to the forum , im not too long on this site myself but ive found it really good for advice X x
My gp fobbed me off as anorexic first , thankfully I never want back near her after my diagnosis , i completely lost all faith in her !!
I underwent a lot of tests to get diagnosed and spent a week in hospital , I hope u didnt have to ensure to many tests before getting your answers :( theres none of them nice x x
I started on 40mg of pred to get me into remission and after about 4 weeks began gaining weight when the inflammation settled, so give yourself time and most importantly be kind to yourself , you'll get there x

NiceCupOfTea

Elite Member

Joined : Jan 2010

Posts : 10718

Posted 6/29/2016 7:16 AM (GMT -7)

If the steroids have made no difference in a week, get in touch with your IBD nurse or GI. To be honest, 40mg of pred should have kicked in by now, which makes me think you are either a slow or non-responder to steroids (quite a large minority of the population are, so it's not that uncommon). I was always a decent responder to pred; it would start working on the same day for me.

There is still time for pred to start doing something, it's just probably never going to be your miracle med as it is for some people (not for nothing do people describe having a love-hate relationship with pred).

In the meantime, a low-residue or bland diet helps some people while they're flaring. It can help reduce the diarrhoea and pain. Paracetamol is good for lowering a temperature if you have low-grade fevers. Hot water bottles are good for abdominal pain.

The mesalazines take about 2-3 weeks to start working. The reason why they are not all that effective in Crohn's is because Crohn's affects all the layers of the bowel and mesalazine can't reach that far down. It only treats the innermost lining, which is fine for UC, but not so fine for Crohn's. Some people do get symptomatic relief with mesalazine, but it's not likely to be treating all of the inflammation, which isn't good in the long term.

Docs in this country are incredibly conservative and you may have a hard time persuading your GI to put you on 6MP or azathioprine right now, let alone a biologic. Their reasoning is that the stronger meds have risks, which is true, but they don't seem to take into account that untreated Crohn's is even riskier in many ways. Anyway, I hope something - either the pred or the mesalazine - does work soon.

Dx Crohn's in June 2000. (Yay

Rose909

New Member

Joined : Jun 2016

Posts : 13

Posted 6/30/2016 11:21 PM (GMT -7)

I am so down in the dumps about it all at the minute. Just feeling utterly rubbish. The pain is still there makin me sick. But the blood is subsiding now. This is the 5th morning of all the pills.
Amy.... youve been through the mill a bit havent you. How awful. At least we have our diagnosis and know there is hope.
My cousin was a non responder to these steroids. She had to go on to something else. I havent been assigned a nurse yet. Think all that is coming in 2 weeks when i re visit them. Ive not really been told anything at all to be honest. I was given the diagnosis, given the medication and packed on my way.

✚ New Topic ✚ Reply

Forum Information

Currently it is Wednesday, February 20, 2019 4:37 PM (GMT -7)
There are a total of 3,042,441 posts in 332,459 threads.
View Active Topics

Recently diagnosed

Forum Information

Who's Online