Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Any Advice of getting through the Modulen diet?


02-14-2014, 12:00 PM   #1
Lisamumofmeg
 
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Any Advice of getting through the Modulen diet?

My mother died from Crohnís complications when she was only 33 and I was only 3. I have been told about this disease all my life, but it was never something I worried about. I had my own children when I was very young, at age 21 I gave birthday to my daughter, who until recently has been beautiful, larger than life and always full of smiles and energy which is most unlike 16 year olds. She was always happy and seemed to see the best in everyone. In October I took her to A&e with what seemed to be an abscess around her back passage. I really expected them to lance it or give us some cream and send us home, but she seemed to be in so much pain I felt I had to get it checked out. That day was the start of what feels like one long, depressing nightmare. She was first seen by the paediatric consultant, he asked the surgeon to look at in preparation for draining. While they were discussing things amongst themselves I heard them mention IBD. Suddenly I thought of my mother. I asked if this abscess could be a sign of crohnís. They confirmed that, that might well be and explanation and explained with my medical history they do not want to drain the abscess, as this could risk further complications. She was then admitted to a ward where she remained in agony for 10days as they tried to get the infection under control using antibiotics and morphine to control the pain. After 9 day the abscess disbursed by its self and the doctor then felt it was time to use an ultra sound to see how deep the abscess was in her skin and if there was any signs of a fistula. Luckily all looked good and they drained and packed the wound so it was able to heal. Since then, there seems to have been no end of test, endoscopies, colonoscopies, MRIís blood and stools. She has also started to experience more intense and more worrying symptoms. Such as bleeding from her back passage, pain in the right hand side of her tummy, frequent headaches and tiredness.
She has with drawn from her friends and her social life and is generally very weepy. She is terrified she will die just like my mother.

Last week we had the diagnosis we were dreading and we were informed she has Crohn's affecting a relatively small section of her terminal ileum (6CM). She was immediately prescribed Modulen and is currently on Day 4. Its been tough few days trying to make her drink these shakes. But every day she accomplishes her full quota which is 2500ml its an achievement. fingers crossed this allows her to achieve remission that is long lasting.

Good luck to everyone else out there... x
02-18-2014, 08:14 AM   #2
Sbrookie70
 
Join Date: Nov 2013
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Hi I am so sorry to hear about your mum and your daughter. I too have Crohn's Disease and I thought I would share me thoughts on Modulen with you.

I was diagnosed with CD in June 2011 after 18 months of horrific tests. Unfortunately after taking every medicine my consultant could throw at me, I had to resort to a right hemicolectomy. This only gave me three months remission and unfortunately after yet another colonoscopy it was revealed that the CD had grown back in the rest of my large bowel. I struggled on and then had a huge flare up in May last year where I was admitted to hospital.

My normal consultant was on holiday so I was given a different one. He was like a breath of fresh air. He advised that I go immediately onto the modulen diet and come off all my meds which were just not working. I just didn't have a choice, it was my last shot.

I went home from hospital and if I'm being honest, the first two weeks were hell on modulen. I found it very hard as it was coming up to summer and all I could smell was food from BBQ's! Turning into the third week everything changed. I started to feel better with every passing day and this made drinking the shakes more bearable.

All in all I managed to stay on modulen wholly for 9 weeks. I got to the point that because I felt so well, I actually didn't want to eat food again! I gradually reintroduced food slowly and maintained my remission for 9 months which was fantastic!

Unfortunately I am currently in hospital with a bad flare up but I'm going to go straight back on modulen for hopefully only 6 weeks in the hope that I will get back into remission!

The only tips I can give about modulen for your daughter is to think that it's not forever and the feeling of being well is better than the taste of food. I really struggled at first as I have two sons and a husband to cook for but I try now to go on auto pilot and not think of the food I'm preparing, just think of when I'm well enough to enjoy again.

It's a horrible debilitating disease which I wouldn't wish on anyone. It helps to hear how other people cope as you do think you are the only one going through it

Hope your daughter manages the modulen and gets some much needed relief very soon - tell her to hang in there x
02-18-2014, 10:27 AM   #3
Lisamumofmeg
 
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Thank you so much for your advice and I'm so sorry to hear you are currently in hospital. I hope you recover quickly and manage to get back into remission. It sounds like you've been on a really bumpy journey.

I think my daughters symptoms are relatively mild as she seems to suffer mainly with fatigue, some bleeding in her stools, stomach pain and of course the abscess that I described above. I'm obviously happy that she doesn't suffer with any more significant symptoms. However I think it is making the modulen harder to stick too, as she hasn't been seriously limited by the disease. Which makes not eating feel like a form of torture. She was in relatively good health when she started it and our dietician said that most people hospitalized when they begin treatment.

You're so right about thinking you're the only one, she say she feels like she doesn't want to talk to anyone about it and doesn't really want her friends to know. This is making her all the more isolated, and as hard as I try she won't join this forum. Maybe she's just not ready for that yet I have had a break through today and got her a psychologist to help her through this period and come to terms with living with a chronic disease.

Please let me know how you get on, I hope you are able to get out of hospital soon

Lisa x
02-18-2014, 05:07 PM   #4
Sbrookie70
 
Join Date: Nov 2013
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Hi Lisa

It must be very hard for your daughter only being 16 yrs old as it's a time in your life when you are constantly socialising. Food just seems to be everywhere you look! I am 42 yrs old and my sons are 12 and 16 which affects our social life dramatically. You do have to think that the drinks are relatively short term to help you feel better in the long term. It is very much mind over matter and requires a lot of willpower which is really hard.

I only plucked up the courage to join this forum at the end of last year and to be honest I find it really helps to read other peoples stories. I find great comfort in other peoples stories and also find there is everything I need to know about CD and it is first hand from the person who it is actually affecting rather than a page on google!

I am very glad you have made progress and found a psychologist as this will really help her. It is such an invisible disease and there are not many people who get it. It is hard telling people you have a chronic illness but you do find out who your friends are and they are the ones that will stick with you through the good and bad times.

Your daughter will find her own way to cope with it and having her friends and family standing beside her, she will do just fine.

Please tell her to keep strong and to remain positive but I do know it's easier said than done.

Sue x
02-18-2014, 06:14 PM   #5
Jmrogers4
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Not going to say it was easy but my son made it through 8 weeks of EEN (Peptide) in Oct/Nov. He managed to go to his first formal school dance with a date (dinner was involved), new school, sports, etc. He even went to a big concert (Macklemore) and I called ahead and they let him enter with his little cooler of drinks. His symptoms like your daughter were also relatively minor as in he wasn't in danger of an immediate hospital stay.
We tried to make food no big deal, we made things he does not like for dinner. Instead of a Christmas Wish List, he made a food wish list of all the things he was going to eat once he was feeling better. He has now crossed off everything on the list except crab. We saving that for a 100 pound party and he may have hit that. We'll have official weight at the GI on Thursday.
I know how hard it is for them, the best advice I was given was don't make it a battle Jack knew that if he did not follow it then other meds would be given (prednisone) which he was dead set against as he hates the side effects.
One of the hardest things was not battling with him about it (the whole teenagers and control thing). If he was not keeping up with the amount I would just hand him a bottle with out saying anything and just walk away.
Hang in there. Please feel free to share Jack's story with her. She's not alone and there was even a perk, he got into that sold out concert without having to wait in line for the doors to open but got to go straight to the security door where they escorted him and his group into the building before anyone else. He (and his friends)were almost wishing he was still on EEN weekend before last at the concert he went to where he had to stand outside in the rain waiting for the doors to open.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-19-2014, 05:13 AM   #6
Lisamumofmeg
 
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Thank you for your responses. Jacqui, Jack sounds like he's not allowing any of this affect his life, I bet he's Mr cool getting his friends into Macklemore without queuing, very VIP. Megan is doing better today, we have ups and lows, sometimes very lows. yesterday she met her friends and went to cinema and then went on a sleep over. I think this has been a real tonic for her. Today is a new day and much to my horror, she has decided to attend an induction day at McDonalds ( She was offered a job there before her diagnosis and the modulen) I really didn't expect her to want to take the job under the current circumstances, but she is adamant she is going to give it her best shot. She said something to me yesterday that made me cry harder than when we were given the diagnosis. She said to me 'Mum, I am not Crohn's I am Megan, and I am not going to let it stop me doing one thing I want to do. this disease will not define me.' Where she gets her determination and courage from who knows. I'm just so proud! I'm holding my breath and hoping she maintains that level of determination so she can keep her job as I know how much she wants to earn her own money, and getting a job is so hard at the moment.
I will share jacks story with her, I'm sure she be pretty impressed, especially with his taste in music

Lisa
03-17-2014, 04:35 AM   #7
Spooky1
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Just wondering if you could ask the gastro bloke if she can have boiled sweets. I know I do. It's just a bit of flavour in the mouth. I know they are empty carbs, but, liquid diet can be awful, especially if given through a tube as the mouth has nothing to focus on. If she can swallow the liquid food then perhaps sucking a sweet is just as easy. But I'm not a doc I just have liquid feed myself that is through the tube.

Hoping her job goes well. Tell her confidence and character play a big part in the way she will survive at work. Having said that then sometimes people don't really know how the illness really affects you. But at her age she does need to make the most of those, supposed to be, glorious young and free years.

Good luck.
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