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I want some food! & I'm just getting worse- My Modulen Issues

:crabby1:

I've just joined here! I hope I made the thread right! I need some help!!?
I'm on MODULEN.... :(

Well..I needed someone to talk to. Someone with Crohns... you know!!?
So I was hoping for some people to help me for the weeks of modulen.

You probably all know... that Modulen is a powder (made into a drink - a grim drink) to give my bowel a rest. I can't eat or drink ANYTHING else.

I am not coping as I am quite young..And it's seeming to make me

WORSE WORSE WORSE!
I do not feel anywhere near enough hungry for them; and there is that ACHE
for food. Normal; Nice; food.

I am still toiletting millions of times a day; and i live on a chair; lying down.
When I wipe after being on the loo; there was SO much blood; its like dipping
toilet paper in red food dye. I've never had that before!? It's like bright red!?
And lots of it... :eek2: :eek2:

It's day 5 today of the modulen. Should I see someone?!
:( :( :( :( :( :( :(

THANKS x
 

Crohn's 35

Inactive Account
:welcome: to the forum. I have never been on Modulen, so I can't sympathize with you but no food I can understand. You don't say if you are on any meds, and if you are not since you are bleeding that is not good. I would take a picture of it and see a doctor as soon as you can. I am sorry you are going through this nightmare, but seeing a gi or doc should be your next move. Let us know what meds you are on. Big hugs to you!!
 
Thankyou so much for replying:)! :smile:
I am on Pentasa; 4 x a day!
Okay thankyou very much; I've tried ringing in; but no luck yet.
I'm not sure whether it is normal.
I've been bleeding before..But a tiny bit at flare ups; NEVER; like that!
 
Sorry; I forgot to mention. Do you know how to change your username? My friend set it
up for me; and its not entirely correct..!x
 

Crohn's 35

Inactive Account
Yes, Go to the top USER CP click on that, on left side there is YOUR PROFILE , go to edit your details and put in what you wnat on Custom user title.
 

David

Co-Founder
Location
Naples, Florida
Hi ToughNut,

1. While my understanding is that Modulen has a good remission induction rate, it sounds to me like you may need to be on something a bit stronger for awhile if you're having that much bleeding (which is not normal). We have a saying along the lines of, "When in doubt, go to the doctor". It's not my place to tell you what to do, but if I was in your position, I would probably head to the emergency room just to be safe if I couldn't get ahold of my doctor.

2. What would you like your username to be? I'm happy to change it for you.

Keep us updated!

*hugs*
 
Thanks Pen!!
Thanks so much David; family are thinking about letting it ''pass by'' but I dont want to risk it. Thankyou!!!!

Hmm... ToughNut definitely won't do!! I am thinking SilverLady..
Thanks ever so much!!!!

I was startled myself!
 
Hi SilverLady,
Welcome to the forum. You might want to check out the Enteral Nutrition sub-forum in the treatment forum. You will find discussion about the powdered drinks there.

May you soon be feeling better.
 
Hello and welcome Silverlady. Glad David sorted you out with your username.

Like Pen, I can't comment on modulen although sorry to hear of your trouble. Don't let this go on too long before seeking advice from your GI team.

Hope your not on this for long and can eat some proper food again soon! I luckily haven't had much bleeding for a while now although it can be quite scary when you see it on toilet paper. It's hard to put a volume on amount your bleeding and toilet paper may make it look worse than it is as it will be absorbed and spread by the paper. I would be straight on the phone first think tomorrow all the same if I were you. If your actually passing lots of blood then get yourself to A&E.

Wishing you best of luck
 

Terriernut

Moderator
Welcome lovely SilverLady. That much blood, I'm afraid I concur with David and Pen. Please get yourself to the ER as soon as possible.

I'm hopeing they can get you sorted!

Please keep us updated as to what is going on with you!!

Welcome to the forum, lots of us here dealing with all sorts of crohn's stuff, and nothing shocks us.
 
hi, when i was first diagnosed i had awful bleeding really bad, i was put on moduline for 6 months and a high dose of pred. I found it really hard on the moduline and tried my best but like urself didnt improve my symptoms, i hated the taste so therefore i didn't drink the amount i was meant to. My dietician and my gi decided to take me off it as i would just lay in the hospital bed crying.
It's obviously not good ur bleeding so much, and hope it gets sorted for u and definitly think u shuld emphasize to ur gi how much ur struggling on the moduline. I know the feeling all u can think of is food. Good luck hope u get better soon.xx
 
Good Afternoon everyone! :cool2:
Still struggling to fit more than 3/4 of the 6 drinks in; and they are reduced to what they are supposed to be. :ymad: I've been frantically calling every one of the gastro team!! They've been discussing my situation for a good few hours now! Wish me luck!! I have been diagnosed for a couple of years now
Hannaho; and I was exactly the same. I'd cry into my hospital bed pillow because everyone would stuff their faces in front of me; and unluckily this hospital had a built in Upper Crust; Burger King; and Pic 'N' Mix sweet shop (as well as some other things!). Not only that; I could smell chicken tika curry! I was on the childrens ward and toddlers and children would have their hot toast with lovely butter; and bring their sweets to show me....!?! The taste is revolting isnt it? I've been on modulen a few times for a long time; but this time it's doing nothing. I find it harder this time; as since the diagnosis time; I am alot more fond of my food. I have to have the same as everyone in amounts of food; and I struggle to share. I can't help it! Terrienut I will definitely keep you all posted; without everyones support and help; i'd be struggling alot more! You can talk to friends and family; but however much they try they just struggle to understand. Thanks! :) SandyM yes that is very true... i'll remember that. It is very true; and would definitely scare anyone. Pen Well; just Pentasa. 500mg 4times a day,I am also on alot of things for hayfever; ALOT of vitamins; and migraines,etc associated. Happy thanks; if I can ever find it...hehe!:)x

MANY THANKS everyone! Just got through the first bath in days....
Need another modulen now -.- Stomach is NOT settling down. It's like being on laxatives:/!! It's day 6. And I'm not seeing much improvement!
Maybe the tiniest 10 minutes of a big splash of energy a day.:L

I'll keep you posted of course!! Thanks everyone! :ghug:

I'm awaiting the doctors call....If I'm off to hospital for a colonoscopy i'll let you know!

SilverLady :wub:
 
Hey SilverLady :) nice to see another face from the UK. Sorry to hear about all the trouble youre having, and it must be hard to resist those upper crust baguettes, theyre well tasty.

I'm sorry you're having a lot of bleeding too - the bathroom often resembles the battle of the somme after ive been so i know how you feel. I hope you've got it/are getting it checked out asap as blood loss is never a good thing and a doctor needs to know about it, even if they decide to keep your treatment the same.

Hannah x
 
Hi silverlady! You said you've been on it before, did it work then? I was on a very similar diet when I was 12, although modules didn't exist back then and I know how you feel. I was supposed to be on it for 6 weeks and then they'd introduce one new food every 3 days to see how I reacted to it, but the diet didn't work in the first place so me eating a new food and my systems didn't mix. They'll they started me off on no food all over again. It lasted nearly a year in the end. It was hell on earth as I was still so ill and it was mental torture. I was being bullied at school t the same time and ended up depressed do had to go and see a child psychologist every week whenever I saw my consultant. I also counldn't stand the drinks so I had a naso gastric tube up my nose and pumped the drink through it at night. Made things a lot easier!

Anyways, didn't want to depress you with my story, just to let you know that you're not alone! The blood seems worrying but hopefully they're looking into that now. Let us know the outcome? If the diet didn't work before and it's not now, I'd say it's really not worth the mental torture. If it did work before then mayb you just need some extra medication like David said.

On the plus side, you shall never take food for granted again. I'm a huge food lover now!
 
Hi SilverLady sorry you are not feeling well at the min my son is 15 and when he was dx in June he was put straight on the drink you are on e only lasted a week his symptoms got worse his inflammatory markers had gone from 52 up to 87 and his bm were worse I would keep pushing for your gi to try you on something stronger just to give you a little bit more energy and start feeling better sending loads of huggs from me and Jordan xxx
 
Hello Everyone;
Thankyou so much for all helping me out!! :kiss:

Jordan29; oh no! I'm sorry that it didn't work!! It's not working for me either! I'll explain to you in a moment what they have decided to do with me!
Misty-Eyed.... OH MY GOD! How horrible!!! You are so brave!! I would have taken longer with 'weaning' back onto the food maybe? I have to do that soon! I know just what you mean; it is mental torture. My mood is horrific! It's worked before; but not now! They are looking into other options...Which i'll explain in a minute. I know what you mean about the food!! I am so grateful for it. I always have to have the same amount of food as everyone else, (regardless!) and I can't possibly share food anymore; its very hard to give someone a crisp!!!?? It's not good though; I'm also now a comfort eater!!? I also am familiar with the gastro- tube. Hannah-Rose I know; they look VERY nice!! I've still never come to having one. I really need to!!! Aha!! I've let the doctors know; it hasnt turned out great.....!! The blood is scary; I am still bleeding; but not as much. I don't know whats going on with me! Sometimes my ''looed out food - well. modulen'' (not great on these words:L) is yellow; sometimes black; its one of the two whilst being on modulen. How confusing?!
Pen; you are very welcome; thank YOU SO much for all replying and helping me!!! :)

I think it might be time to tell you what happened when the doctors called back...!!!! They've decided to do these things in this order.

1. Give me antibiotics for a few days. (something starting with M?)
2. Give me a drip/ tube to keep in to feed me the modulen. This might not be great as I don't have an appetite as it is...So I'd be likely to sick it all up!
3. Give me steriods....THROUGH MY VEIN?!?!

I seriously am worried. Anyone have an experience of number 2/3??

I'm a bit worried! :shifty:

Reply when you can!!
SilverLady:wub:
 

Terriernut

Moderator
The steriods by IV will work quickly. The feeding tube is yucky! But it sounds like the best way to get nutrients into you. Hopefully you wont throw it all up!!! You wont have the taste to deal with so much, which should help actually.

Honey...I'm sending you the biggest huggggssss. You can get through this. One minute and one hour and one day at a time. It will pass. That's all thats gotten me through some dooozy flares. I sure wish I could come visit you and give you a personal hug.
Misty
 

DustyKat

Super Moderator
I think it might be time to tell you what happened when the doctors called back...!!!! They've decided to do these things in this order.

1. Give me antibiotics for a few days. (something starting with M?)
2. Give me a drip/ tube to keep in to feed me the modulen. This might not be great as I don't have an appetite as it is...So I'd be likely to sick it all up!
3. Give me steriods....THROUGH MY VEIN?!?!
As awful and scary as it sounds their plan of action is fairly standard.

1.The antibiotic will be Metronidazole (Flagyl). It specifically targets infection in the bowel and reduces inflammation.

2. Unfortunately it sometimes comes this to this due to the need to get nutrition into you. If the tube doesn't work they go to Parenteral Nutrition which is given via IV.

3. As Misty said, it gets the steroids working quickly. Most people admitted to hospital in a flare will have IV Hydrocortisone.

My children haven't had number 3, although my son was very close to having Parenteral Nutrition earlier this year. My son has had IV hydrocortisone on 3 occasions in the last 9 months. You will certainly find quite a few others here that have had 2 & 3 though.

Just know that you are not alone in this. Sending loads of hugs and good luck your way!

Dusty. xxx
 
Hi silver lady i know the taste is revolting and its horrible my doctor told me i had to get used to seeing people eat infront off me ..how horrible poor u i know how awful it is and yes i have had a feeding tube down for me it was bad and good as found the taste a major problem but like urself i didnt feel hungry and that was also part of the reason i struggled drinking it and when the moduline was past through the tube 8/10 i would be sick. I also was drugged up on antibiotics and steroids..

I really hope u get better and feel so sorry for u to be going through so much...xxx take care
 

xJillx

Your Story Forum Monitor
Hi Silver Lady! First off, I want to say how strong, brave, and positive you are even in such a very difficult situation at your age. You're one tough cookie. Don't you forget that.

I sure hope that whatever next step you take as far as treatment, it gets you feeling well again soon. Please keep us posted. We'll be thinking of you!
 
Hello again everyone!
I'm very pleased that you all reply so quick. I'm scared to death; really need your support!

I just want to quickly say; that I made a mistake; and it was CHOICES; not an order. OOpps! :ybatty:
I said antibiotics. If this doesn't work....
What would you do??Please answer this,, I have until Wednesday lunchtime to get some improvement from these antibiotics; or I will need to choose my next option!


Terriernut; I've just realised I spelt your name wrong in one of my posts replying to you; I'm sorry! How long would I have the steriods for; can you tell me everything you can?? I know; !! before one of my colonoscopies I had it (long story...basically repeated vomiting with picolax; thought i was stubborn; so gave me tube so that I didnt have to have the taste; i was still sick; have some sort of intolerance to it..? ) the tube would occasionally come out; and I hated how my throught got sore...! Yes; hopefuly I won't throw up!!:S I definitely need the hugs; this one is officially my worse flare! Thankyou so much:):) :kiss: :hug::smile:

DustyKat; you are coming to be so much help; thankyou! I've clicked on posts that I have myself wondered about; and you have been so helpful. Thankyou!!! Okay; I started the tablets an hour ago. Nasty taste after...I was frantically shouting ''FOOD FOOD FOOD FOR THE LOVE OF GOD; FOOD!'' I'm glad the taste has gone; but no food for me! And you are right about the tablets; it is the Metronizadale:)!!! As for the tube; I have had it before; just not for the drinks. I barely know anything about the steriods in veins...could you tell me about them?? Thankyou so much! I do know now that it isnt just me:) :kiss::hug::smile:

Hannaho; thankyou! Sounds like you were going through a rough time aswell!! What were the steriods like?? Ah no! I am very worried I will sick it up. Sounds terrible! Poor You!! Thankyou ever so much! Keep well!:):smile:

Thanks everyone. SO much:) :) :)
I know I have asked you all...But please let me know about the steriods and keep contact.
I dont know WHAT I would do without you all!

The Doctors treat steriods as this horrid; deathly subject; that's why I am worried!!

I'll reply first thing in my modulen-morning:)
SilverLady :wub: :ghug:
 

Terriernut

Moderator
SilverLady...we love/hate steriods. Bad flare...first choice steriods. They will drop your CRP level quickly. Thats your inflammatory response. They work, and IV prednisone works very quickly indeed. I've noticed a response within 24 hours or less with IV pred.

As for choice....personally it sounds like you need antibiotics AND steriods. As for the feeding tube...I should hope that should be very short term if they get you under control quickly with the steriods and antibiotics. After that liquid diet and working up to soft food, low residue.

(Our Dusty is a nurse...she's AMAZING isnt she??!! We ALL love her!)

By the way...dont worry about what you call me!!! I'm not bothered as long as I remember who I am I'm happy!
 
I've been on the elemental diet twice and didn't eat any food for 8 weeks both times so I can completely sympathise with you - I didn't feel at all hungry and felt so so unwell yet at the same time craved food! (If I would have eaten it though I probably would have just been sick!)
I bleed an awful lot when flaring - sometimes especially when I was younger it was mainly just blood in the toilet. Although if that's not usual for you you should definitely ckeck it out, try to minimise the damage.

Hope you get it sorted and feel better soon

Vicky xxx
 
Hang in there, SilverLady. A hypnotist helped my daughter drink the Modulen (I know it sounds daft, but it worked). She's still on a little bit each evening since her op. We don't know whether it's doing much good from the inflammation point of view, but it keeps her weight up.

Dobby

daughter dx aged 7, Nov 2010; R Heli May 2011
 
Ur definitly going through it urself and even though its obviously hard for u , u seem like a very strong person. U poor thing steroids i defo had a love hate relationship with them they do help with the bowel and calm the flare i did still have flares landing me up in hspital but thats was mainly due to weaning of them. I hope u start to feel better soon and the steroids nd antibiotics through IV is very effective..Good luck u poor thing.. all my best.xxx
 
SilverLady,
If you scroll up to the top of the age and click on Crohn's Disease Forum and then scroll down to the 'Treatment Form', to the right of this you will see the 'Enteral Nutrition Sub-forum". There will be info about the liquid drinks and a little bit about the nutrition through the vein called TPN.

May you soon be feeling better.
 
Day 7: I DID A WEEK! I DID A WEEK!!! and Page 2!!x

Morning everyone!
Please don't' ever go; you're all AMAZING!!
I won't if you don't; hehe! :lol:

Gosh it's day 7 today! HOORAYY! :dance: And we're on Page 2!!! :lol: I have to drink all 6 modulens today...or else!!! The antibiotics are for today; and I need to get a quick speedy recovery from them! I REALLY don't think the tube is an option for me. It just makes me think that they reckon I am not drinking much because of the taste; but I swear; I am just not hungry :( This means I'll probably throw up.
Steriods...I guess... I'm not TOO worried...I just want this horrible flare up to get on with it's life and get better?!

First I must say sorry to xJillx as her post was posted whilst I was writing yesterday night's post; so I didn't write back to her. Thankyou xJillx what you said meant so much to me. I'm trying to be best; but I am a bit of a scardey cat! :eek: I hope it does get me better :) happy...thankyou :) :) I can be a bit dumb sometimes...I just want to be used to this site as soon as I start it !! stay well! hannaho; THANKYOU! I need all the information I can get on steriods! How long were you in hospital for? Thankyou!!! :) As for being strong.... I'm not very strong at all; believe me! It's you and everyone who keeps coming onto this thread thing that is keeping me strong! I can't explain how much I am grateful! In return; I'll keep everyone with regular posts:) Hi Dobby; I like your name; :lol: :) Ah yes; same as me. Since diagnosis I have never left modulen...Whether it's 2 cups a day with food; or full modulen! I'm glad your well! And it is supposed to dampen down your inflammation!xxx vickyhunter; oh no; poor you! it's nasty an experience isn't it:/! It's crisps for me this flare up that I SOOOO fancy!! ooh...and some chicken; as per usual:)! the blood hasn't stopped by the way; i forgot to mention that. it's still terrible. :/ atleast the doctors know now....WE CAN SUE IF I DIE :)....:L
Terriernut...Or TezNut? I like that; hehe:) ! THANKS for more steriods information (oops...nearly wrote suicide...thats not right!); thankyou for posting back:) I will keep it in mind. How long would they do the steriods for?

The really bad blood hasn't stopped; I'll mention that again.... But you can lose up to 6 pints without it mattering... so I might be alright!!!! it just worries me that my stomach is bleeding!

Next Modulen....11. I'll be back then!xx thanks guys; what would I do without you? :ghug: ..... and now I have the hiccups!x
SilverLady :wub:
 
Silver lady u have been a great support on my threaad aand really appreciate it.I was in hospital after i was diagnosed and on moduline for a week and a half then ended up back in there two days later for another two weeks being admitted was because of The bleeeding and the reallly bad pain since then i have been in and out a total of nine times.But steroids did help i just hated the side effects. Hope u get better soon keep us posted and wow page two already!!!.lots of love.x
 

xJillx

Your Story Forum Monitor
I really don't like that you are losing so much blood and your GI isn't concerned unless you lose 6 pints. That's silly! Oh, I hope these antibiotics work for you!!!!
 
Hannaho!!
THANKYOU for posting again! I thought no one would! Aww thanks; I'm glad that my lieing down all day on a couch feeling like rubbish will do something!!!
Oh god; that's terrible!!! :( What side effects did you have?
Please keep well and out of hospital;
Lot's of Love to you :kiss::hug:
SilverLady :wub:
 
Ur more than welcome and i hope ull get better soon. the steroids made my joint pains worse and bloated my face out, i didnt put on any weight whilst on steroids like they wished but thats crohns for ya..lol. I think they will really help u and the benefit for me was definitly greater than the side effects. so dont worry ..keep us posted lots of love..xx
 
Hannaho.... Gosh, must have been awful! How long were you on the steriods? What happened when you weaned off? I'm not worried about not putting on weight; I just want to get better!xxxx Thankyou:)! I'll definitely keep you posted; keep posting too!

xJillx you always comment whilst I am writing a post; hehe! xxx I know;! The doctors are MAD! I am talking to the doctors tomorrow lunchtime about everything; if I'm off to hospital; I'll let you in too! (bring my laptop; hehe!)

Thankyou for posting!
SilverLady :wub:
 

Terriernut

Moderator
All my digits are crossed for you SilverLady, sounds like with that much bleeding hospital might be the right place for you to be!

Steriods can be a short term thing. But they need to get you under control. I have gotten a moon face from them, but you know, I dont care. Just take your calcium with the pred. The side effects are worth it. I hope they get you sorted ASAP!!!

:rosette2:
Misty
 
I was on them for 6 months i still had flares on the steroids landing me up in hospital but that was mainly because i was weaning off them it took me a long time to get off them but they helped so much and like urself i would have done or taken anything to get better...I'll defo keep posting , have u been diagnosed long?..x I really hope u get better soon .i feel for ya.xxx
 

DustyKat

Super Moderator
Holy cow! You can't lose 6 pints of blood! You only have 8-10 to start with.

Granted, steroids are not a nice drug but they can be an integral part of saving a life and/or preserving bowel, not to mention the main use which is bringing symptoms under control quickly and providing relief. When Matt was on them they didn't prove to be a wonder drug due to other issues but they certainly did help stabilise his condition. I didn't like that he was on them in any way, shape or form but the alternatives were worse in our case.

Dusty. xxx
 
Doctors Call!

Hi everyone! The ''What should we do with her then?'' is a drag. We've had an email rather than a call; and he agrees that the tube is out of the question. He wants me to leep on the modulen; which is annoying if it's not going to work (I WANT FOOD!!!!) - and give the antibiotics 24 more hours to work; so that it's been the 48. They are definitely thinking about an admission to hospital; but maybe a different one to last time...I'm seeing him tomorrow :ywow: :( :(

So. Well. I've just HAD it! If they wean be back onto food and put me on steriods.... ME = :soledance: :D :D :biggrin: :biggrin:

But no :(

Terriernut... Thankyou Misty! I just reaaally hope that these steriods are going to work! I need to get out of this ''worst yet flare'' and get me back to working; eating; and having a normal life again.
Hannaho!?! GOSH. You've had a terrible time with them ! If I'm on steriods in the veins would that be the case with me!? 2 years now I've been diagnosed. Feels like 2 months the way I am handling it! Thankyou :) :) :)
DustyKat; I KNOW! A nurse and a trained gastroenteroligist said that and agreed!?! Well. Whatever they say; I am NOT losing 6 pints of blood!!!! Oh no; I'm sorry about Matt! What were the issues; if you don't mind me asking?

Hope you all keep well.
SilverLady :wub:
 
Dusty; because of the steriods?!
How horrible!

Later today; I need to tell everyone about another Doctors call; which has left me feeling absolutely rubbish; and in tears. If only I was more brave. I'll let you know later!

SilverLady :wub:
 
Hey SilverLady,

Really sad to hear your having a tough time of it. I can sympathise on the Modulen front. I'm in my 5th week of it now. It's vile eh? I'm on 9 a day now with 8 scoops each. All I do all day is drink modulen and sit on the toilet!

I see we're in the same area. Are you under Dr M's clinic at the RBH? If you are, are you talking to Heather J? She's been really good to me over the last few years. (been "mid-flare" for about 4 years now) I'm really supprised they emailed you! Not exactly the personal touch you want/need at a time like this.

I'm sure i'm not alone when I say the modulen WILL get easier. Just strawberry it up and see it off! It always annoys me when people say things like that. :mad: :lol: I'm taking in 3000kcal's worth and still losing weight so will prob have to step it up at the next dietitian visit.

I'm due in for surgery on the 22nd of Nov for my 3rd resection. As soon as i'm over this one i'm really keen to get into remission through diet. I've been on all the drugs over the last few years, pentasa; aza; preds; methotraxate; infliximab; adalimumab. non of it is working. Check out what Bobby's Parker's been up to

crohnsforum.com/showthread.php?t=19691

I have to say well done to him for this. Not just for himself but raising awareness for all of us. Everyone please join me in saying thanks to him for his efforts!

If you need a shoulder to cry on, be it virtual or real. Just shout. we can't be far away from each other.

JK
 
The steroids definitlly helped but my bowel just couldnt cope with out them. everyone is different and i think they would really help u.xxI was but on azathriprine (sorry think i mss spelt) and they helped but they came with there own side effects i know i have been diagnosed about and year and half and for it feels like only a month ago as well from all the flares but steroids definitly helped so dont be nervous.xxxHope ull b better soon.x
 
Back from Hospital.

:(:( Hiya everyone!
Long time no see. That's because I've spent the last week in HOSPITAL. I got back yesterday. They tried me on Elemental 028. Through an NG tube. I gagged the whole time as they put it in. They tried me with feed through a syringe into it, but I would throw up. So I had an IV..Drip Stand thing. I hate this tube, and I need food.

No steriods so far. This is hell.


Talk soon!
 

Terriernut

Moderator
The antibiotics, did they help at all? What about your blood results? Oh sweetie, I hope they get you sorted soon! Hard to believe no prednisolone??
 

xJillx

Your Story Forum Monitor
Oh, you poor thing! So, what is the plan now that you are back home? Are you still taking Elemental 028?

Hang in there, missy!
 
I cannot tolerate most of the ingredients in Modulen or Ensure. What always helped me when I had a severe flare-up was blended vegetable soup made with chicken broth or stock. Ingredients: Chicken broth, zucchini, celery, carrots, ginger, garlic, onion, parsley. Bring to boil, lower to medium heat, let simmer for 2 hours. Let cool. Blend in blender until liquified. If you want an exact recipe check out "Restoring Your Digestive Health" by Jordan Rubin.

I add a tablespoon of extra virgin olive oil and a tablespoon of grated parmesan to each cup of soup. This adds essential fatty acids and calories if you can tolerate them.

When you start feeling better you can add some blended chicken or cubes of chicken. I find this is a very healing soup. Good luck!
 
:crabby1:

I've just joined here! I hope I made the thread right! I need some help!!?
I'm on MODULEN.... :(

Well..I needed someone to talk to. Someone with Crohns... you know!!?
So I was hoping for some people to help me for the weeks of modulen.

You probably all know... that Modulen is a powder (made into a drink - a grim drink) to give my bowel a rest. I can't eat or drink ANYTHING else.

I am not coping as I am quite young..And it's seeming to make me

WORSE WORSE WORSE!
I do not feel anywhere near enough hungry for them; and there is that ACHE
for food. Normal; Nice; food.

I am still toiletting millions of times a day; and i live on a chair; lying down.
When I wipe after being on the loo; there was SO much blood; its like dipping
toilet paper in red food dye. I've never had that before!? It's like bright red!?
And lots of it... :eek2: :eek2:

It's day 5 today of the modulen. Should I see someone?!
:( :( :( :( :( :( :(

THANKS x
hi my name is sandra and i have been on modulen for 6 and half weeks, and yes i was like you couldnt stomache it at all but that seems like a life time ago ,do you put the flavouring in it, there strawberry,bannana chocalate coffee and lemon lime flavours these do help also i puts lots and lots of ice in it, i was only diagnosed with crohns 21st sept, so it was very scary for me and my family, do you have a specialist nurse you can ring at the hospital,i my pains are no longer but i cant leave the house till late morning as i have to rush the loo a bit, hope this helps you a little bit, i do feel for you cos i know wot u goin through ,im here if you need to talk take care love sandra xx
 
Steroids it is :(

Hiya Guys..!
Well; once again; I have a problem. I promised not to go, so I'm back for an update!

I am off to hospital for 7 tonight; for yet another admission. ;(

1. I did Modulen.
Didn't work at all.
2. Elemental 028 Extra
Worked a bit...But then got ill again.
3. Steriods.
???

So steriods is my only option now. I am going onto Prednisone. (OR Prednisolone, I'm not sure:( ) SHOCKHORROR!
I've decided to start a new thread (which I will do shortly) on the side effects of Prednisone. I feel this is a bit of an outdated thread now!

I have heard that you've all met my Mum! rainbowmum?
:)

Wish me luck guys; and I will still keep you all updated on here!Xxxxx
Thankyou so much everyone! :):)

SilverLady :wub:
 
Hi SilverLady,
Thanks for letting us know how you are doing. I am sorry that it is taking so long for you to find a treatment that will work for you. Good luck with the hospital admission and prednisone.
 

Terriernut

Moderator
Good to hear from you SilverLady, although I'm sorry it wasnt better news. :stinks:

Pred should do the trick for you, my digits are crossed that it does. But I'm sorry you have to do it.

I am a bit upset it's taking them so long to get you sorted out! They seem very very conservative in your treatment!

I will go look for the other thread.
Huuuggggggggggsssssssssssssssss
Misty
 

xJillx

Your Story Forum Monitor
Good luck with pred! Don't be so scared. It has done wonders for so many. Sure, there are some possible side effects, but as long as your not on it long term, you should be back to normal once you finish the course.
 
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