Struggling with more weight loss I can't seem to keep anything in!!!

[Jenny06xx]

So I've been put on asacol to add to my list lol.

I'm on budesonide ( entocort ) 3x day and loads of vitamins, calcium and iron plus trammadol , codeine, buscopan , paracetamol an I'm going nowhere fast!!

I know I have a stricture and obviously crohns lol but this weight loss is discussting ! ( no offence to others)
I have been told I look like a crack head , family think I'm on drugs , so u can understand the degree of weight loss!
I feel awful I look awful an I'm in constant pain this med cocktail obviously isn't working for me.
I have a gi app on 14th June but I need some advice on build up drinks etc .

I have ensure plus yuk! I do eat when I'm starving but it's pointless it makes me soo much worse .
My d has never stopped I can't seem to keep anything in at all , I was gonna get some bulk up powders or something from holland an Barrett or similar but I don't know what to get at all so any advice on where I go from here?

Just wondering y I'm not gaining on steroids but loosing , is this normal??

 

[bruscar]

Sorry jenny but i definetly am no use to ya cos i'm a fat bastard !!

So sorry to hear your under the weather and good luck o the 14th of june

XX

 

[Jennifer]

Weight loss is normal if the meds aren't working to keep the inflammation down causing you to not absorb anything. Have you taken Prednisone before? That's one of the steroids my GI always put me on when I was in a bad flare. Prednisone, Asacol and 6MP is what I was usually taking during a flare and usually Ascaol and 6MP while in remission (although currently I'm only taking the 6MP). I don't know if those drugs will work for you though. Having a stricture is complicated especially when its all or mainly scar tissue. The only way to battle that is to either have it stretched (which isn't permanent unfortunately) or to have it removed. Drugs only work on it if the stricture is mainly inflammation of the bowel but not if its scar tissue caused by inflammation, sores etc. I was similar to you before my surgery where I was simply losing all of my weight through constant diarrhea no matter what I ate although I wasn't vomiting often. The doctor never told me that I had a stricture but I did have a section that meds simply were not working on at all even at the highest dose for my weight for about a year. So they took that section out and I've been in remission ever since. If your GI doesn't know your symptoms already, even if you have an appointment with them coming up, you should contact their office and let them know how you're doing.

Only thing I can suggest is a bland diet (white rice, chicken breast, broth, steamed veggies, apple sauce etc.) with Ensure, jello and another drink that contains electrolytes. You have to keep up your fluid intake at least cause you're not only losing nutrients but water weight as well. Even if you throw it up, keep drinking cause you're still absorbing some liquids.

 

[Jenny06xx]

Thank u crabby

Yeah I was on pred last sept till dec and found it amazing !
Then came off an bam!
I've been bad ever since an kept half dying an managing at home coz I had to wait for my pill cam to show problems.
It definately did and got stuck but I was left without meds until my last hospital stay about 3 weeks ago where they were shocked I'd been left etc u know the drill !!

I was put on entocort as last time I couldn't sleep well on pred then more vits etc, an sent on my way till June , mind u it took them 3 days to come an c me!

They said if the meds don't work the stricture needs to come out so I guess that's the next step .

I hate phoning my gi so went to the gp last week who put me on asacol aswell for a 2 week trial.
I've been going through a messy break up an am worried that with ppl thinking I'm on drugs he's gonna think the same an we have 2 kids together that live with me, I have had enormous stress so I guess that adds to things.
I never thought I'd say I wish I was a uk 12 !!
I will call someone later an ask for some pred or something coz I'd really like to avoid an op with kids etc but I can't deal with it much longer .
Do u think he will just sort me a script without seeing him etc he is such a p**** he really gets to me sometimes I'd rather avoid him like the plague , his answers last time were eat fatty crap ! Well duh eat at all would bloody help somedays lol
Jen

 

[littlemissh]

Try fortijuices - forest fruit I think is the nicest. Also if you can tolerate milk then resource energy chocolate or banana are just like milkshakes without the horrid aftertaste..they are actually the only supp drinks I would say are pleasant. Your dietician should be able ask your gp to prescribe ..your gp may without dietician say so but some expect you to be under a dietician..you should ask for a referral if this is the case.
These drinks are strictly controlled as they are expensive but crohns is in the list of 'acceptable conditions' for prescribing.

 

[Jenny06xx]

Thank u littlemish x

I drink full fat cows milk etc aswell an if I think I'm having an ok day I really do try to eat as much as I can tolerate it's just not staying in it's a bloody nightmare !

I'm gonna call my ibd nurse later an c if she can help in any way at all coz my dietician app seems to have not appeared at all again!
I know I should chase these things up so it's partly my fault but I've had so much going on here sometimes I just have to come last lol

I'm prescribed ensure plus but I just wanna b normal now !
It feels like that will never b possible now but I'm thinking removing the stricture may help somewhat .
It's been so hard to deal with this stupid disease never mind trying to get a damn diagnosis then some usefull treatment , this is gonna sound so awful but if it wasn't for my kids keeping me going an in some sort of routine .......... U know the rest!

This is no life ,no normality, no one at the end of the phone (apart from 999 lol) for me anyway .
If having an ostomy was a 99% remission then I'd do it now , but I can't guarantee I'd b any different could I?

Even listening to myself here is depressing ! So I'll leave it here .
Jen ( the moaner )

 

[bruscar]

Hi Jen,

I wasnt meaning to sound ignorant, so apologies if you got the wrong impression.

Good health to you and i hope you can get sorted asap

Regards

Bruscar

 

[Jenny06xx]

No not at all XX

 

[Jennifer]

Try phoning your GI (or his staff) and ask for a Prednisone script since it worked well for you in the past and make it sound as urgent as it is if not more so. You don't have a lot of time as you are caring for your kids and you worry that you may be dying at the end of your rope but don't have the time to keep calling and calling etc. Something like that. In the meantime, is it possible to see another GI (second opinion) since you don't like your current one so much? Its important to have a good relationship with your specialists so you get the best care possible.

 

[Jenny06xx]

Sorry I keep moaning to u all I suppose I just need to vent to ppl who know what I'm going through an can help a bit.
I think the disease is very isolating as well as debilitating and frustrating an seriously if your not going through it you will never understand the things we go through.
I suppose some may try to , and think they do and help all they can but still it will never b enough .

Every 1 I called today will get back to me on Tuesday so at least that's something, still not enough in my opinion though but what can I do .

Is there the option of a temporary ostomy for instance when having my stricture removed just to give me a break for a while ?
Would it help at all ?
I think u get to a point sometimes when enough is enough an I'm way past that ! I don't care what it looks like or whatever, I just need a break from the pain an diarrhoea .
Jen XX

 

[Jennifer]

That all depends on if gut rest is needed. Talk to your GI about it. Of course its possible but if there isn't a reason to do it (say removing the infected portion is all you need to feel well again) then your doctor wont do it. Stomas aren't easy to deal with either at first and come with their own set of complications. Check out the stoma subforum for more info. And yes gut rest can be helpful along with medication but again, its only if its needed.

Moan away! That's what we're here for.

 

[Grant]

Jenny, full fat cows milk may seem like a good idea but & its a big but, dairy products can make things worse. Now I avoid pasteurised milk because its been proven to carry MAP bacteria which can attack the faulty gene that us Crohnies have. I use UHT for low fiber cereals & these days its not half bad. Its also taken to above 100.C(Ultra High Temp) & that kills off all bacteria. Be careful.
You say you came off Pred & wham!! Did you wean off slowly?? Because if you dont then you can get the rebound effect & the disease will come roaring back & be very very nasty. Sorry if you know all this already.
Finally how about Loperamide Syrup, it gets into your system quickly & might just quell your belly.
I'd ask your specialist
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs