Newly Diagnosed - In need of assistance please

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Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/21/2010 11:00 PM (GMT -7)   
Hi there all,

Newbie here, just diagnosed with crohn's in the past couple of weeks and have spent the past few days scurrying high and low for help and support on the web.

Let me give you some background on my current situation to begin with - I am a UK based 27 year old male, who, up until the start of 2010 was fit happy and healthy!

Since January, I've been off from work on "the sick" whilst visiting numerous GPs, doctors and hospitals (both NHS and private) and having numerous tests to find out what is wrong with me. Eventually I was diagnosed with Terminal Illeal Crohn's and was started on 40 mg of Prednisolne, this was fine for the first couple of weeks and the pain gradually improved until the steriod dosage was cut, leading to me being doubled up in agony, feeling sick, crampy and generally completely out of it.

Two weeks ago I was admitted to A+E in agony with my stomach, the doctors were not in the slightest bit interested and I was sent home with codeine and laxatives. Having taken the meds prescribed I was very much empty boweled but feeling no better, another private consultation later (gotta love the NHS) and I was admitted to the local hospital gastro ward as a matter of urgency.

Further tests have shown a second area of active Crohn's as well as a twisted fistula and I have been prescribed a MODULEN diet for the next 6 weeks, as well as increasing the prednisolne dosage back up to 40mg and starting on 6-MP. I've now been released home from hospital with strict instructions to remain on the Modulen and only the modulen for the next few weeks (No tea, coffee, juice anything.... :( )

As someone who loves his food I'm finding this most difficult - its been a week so far and I feel no better for it, still as uncomfortable and still desiring food stuffs I'm not at all allowed. (although I know the modulen should keep me from a return to the hospital)

I've been flavoring the modulen with milkshake powders to make it somewhat palatable but any advice anybody could offer on making modulen more interesting would be greatly appreciated.

Being diagnosed with Crohn's hit me for six but I wasn't too fussed - I didn't envisage such a great lifestyle change when I was first diagnosed, having seen a family member make no concessions for his Crohn's I wasn't concerned in the slightest, now however, this has been the scariest time of my life - being told on a hospital bed I'm seriously ill and people die from this isn't my idea of fun....

Mike686
Regular Member


Date Joined Jun 2006
Total Posts : 39
   Posted 4/21/2010 11:53 PM (GMT -7)   
I just did a Google search on this Modulen stuff and I'm suprised I've never heard of it before. When I was diagnosed the doctor had me drinking some stuff called "Boost" which looks to have similar properties. It looks like they're putting you on a maintenance medicine with the 6-MP. I really hope that works out for you because I had some problems with it. I would hope that you're getting blood counts on a regular basis. Good luck man.
Diagnosed with Crohn's disease February 2007, currently on Humira bi-weekly and Pentasa 1000mg 2x daily


Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/22/2010 1:21 AM (GMT -7)   
Yep, regular blood counts to ensure the 6-MP isn't causing more problems than its resolving, its a whacking list of potential side effects!!

The modulen has a 79% success rate of clearing current issues apparentley which is the flicker of hope I'm trying to hold onto.... Just wish I could have even the most basic of foodstuffs at this moment in time, by day 2 of the diet I'd of happily eaten the hospital foods!!

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/22/2010 3:10 AM (GMT -7)   
Hi,sorry you have to go through all this, I know whats its like with the NHS, as I am in the UK as well! I have been flaring now since January, there never seems to be an end! I go on a high dose of the preds and then as soon as I start tapering down,Bang! the flare starts all over again.I have been on the modulen diet,but only before my resection, since then I have just stuck to a low fibre,low residual diet which had been helping up until now.At the moment nothing seems to agree with me, so after my visit to the specialist on monday I might be joining you in the heavenly modulen diet again!!One thing I don't look forward to either!!
I did find there are 5 flavours ,I think, you can take with modulen. I found the banana and strawberry ones to be the better tasting of them, the chocolate one is ok in small amounts but the vanilla one was very bland and tasteless.There is a lime one as well as far as I can remember but I dont think I liked that one too much.
I know with the modulen diet you can boiled sweets, as I can remember living on fox's fruit sweets and pear drops!!That atleast is some thing you can have a nibble on as if you are eating!
Good luck and hope things happen for you and get well soon!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/22/2010 3:38 AM (GMT -7)   
Thanks for the kind words and advice - looks like I'll be shopping for more powdered flavours then, i did find a raspberry ripple flavour milkshake powder I might have to try :)

I'm still flaring as writing this, spralled out on the sofa - awaiting the time I can have my next modulen "delight", luckily the pain isn't as severe as its been previously so I do remain hopeful that the time without my fav foods will be worth it.

Due to the mess of my insides, surgery is the next/last option and I really don't wanna have to go down that path if I can help it - everything has snowballed at once in the last few weeks though and I just wanna stay outta the hospital again if i can....

One more quick Q, I've been told to avoid all drinks bar water - would volvic "slightly" flavoured water be classed as water still? Anything to add any additional tastes back in to my currently bland diet requirements....

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/22/2010 3:51 AM (GMT -7)   
I would of thought the volvic water should be ok as it is no different to adding flavours into the modulen. I would stick to the modulen flavours rather than milkshake flavourings because of the additives they put in those powders, or run it by your chemist or doctor first,just in case it doesnt make the modulen as effective for some reason.
I hope your pain eases more each day,I know it's hard to be pain free all the time once you are flaring but it can become more manageable, and you learn to deal with it easier!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/22/2010 4:45 AM (GMT -7)   
I've only been supplied the one "plain" flavored modulen powder, I'm gonna have to call the hospital and see if i can get a hold of any of the other flavours.

Today is a bad day - probably the worst I've had since coming out of the hospital, stomach is flaring something rotten....

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/22/2010 5:00 AM (GMT -7)   
ask your doctor to prescribe the flavours, thats how i got them, i dont think they tell everybody you can get flavours but with all the meds i get, my pharmacist knows me by now!! lol I'm not sure if the hospitals keep stock of the flavours, and the chemist might have to order them in for you, but its worth a try anyway!
good luck!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/22/2010 5:03 AM (GMT -7)   
thanks again - i'm gonna get on the phone right now :)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/22/2010 7:12 AM (GMT -7)   
Hey Malinki,

I am hoping one of our members "Writer" will be along soon. They have alot of info on the enteral diet you are on. This is a really good way to get your Crohns quieted down though. It helps the bowel to rest and heal. I do think that you should call your doc though and see if there is any type of flavoring you can add, I think that might make it a little more palatable.

As for Crohns being a death sentence, you will feel like death sometimes, but it most definetly is not a death sentence. I have had this darn disease for nearly 35 years. I have 3 grown daughters, 5 grandchildren, an amazing husband, and been at the same job for over 20 years. There will be bumps in the road here and there, but for the most part you will have better days once they can get this flare back under control. The first flare is generally the hardest for us. I know I was the sickest when I was first diagnosed. Hang in there, once they find the right treatment for you, you will feel better. Whatever you do though, remember this is a chronic and incurable bowel disease and must be treated at all times, so always take some kind of maintainence med at all times, so you don't have to feel like this again. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/22/2010 12:14 PM (GMT -7)   
It sounds like you have the worst of all possible worlds: steroids, which make you want to eat everything in sight, but also enteral nutrition (the Modulen), meaning you can only have the liquid. It's a lot easier when they prescribe the liquid diet instead of steroids, because you have the advantage of avoiding steroid side effects to compensate for having to stick with the diet. As others suggested, if you can get more flavor packets, that should help. Also, if you don't start to see more improvement soon, check in with your doctor. Sometimes people will respond to one formula and not another, so perhaps switching to a different product might be an option. It looks like you're in the UK; Elemental 028 is the other formula that seems to be quite popular there. I hope you start feeling better very quickly.

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 4/22/2010 12:52 PM (GMT -7)   
I tried the Elemental 028 formula and compared to the modulen it is absolutely vile!!! it comes ready mixed in cartons similar to juice cartons with a straw and even though they are flavoured are disgusting!! If modulen agrees with you, I would stick to that,if I were you. If I were on the E028 for more than a couple of days I think I would rather just drink water and have plenty of vitamin supplements.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 4/22/2010 1:43 PM (GMT -7)   
In case they did not tell you, it can take 3 months or more the the 6mp to reach full effectiveness, but it is one of the very best maintenance medications for Crohns with a long track record of success in keeping patients relatively healthy and out of severe flares.
And as noted, nope you won't die from this . . . I am another Crohnie with 40-plus years of active disease and counting. I would say, though, that with fistulizing disease detected this early that you may well be headed for some surgery, which might not be the worst potential outcome, given that it can and often does result in a less troublesome course for some years.

Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/22/2010 2:05 PM (GMT -7)   
Thanks guy, the advice from others who have come out the other side means alot to me right now, I'm gonna have to stick with the modulen as its only been just over a week so far,its not that bad - I JUST WANT ALL THE FOODS!!! (I thought this would happen once I went on the steriods....)

Have purchased an Ice cream maker and am going to start making modulen style frozen cr*p so I can at least pretend I'm eating :)

Wish there was a "quick fix" and I could get back to work and leading a normal life....as I'm sure all of you have thought at somepoint - again, thanks for the assistance

CoolClarissa
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/22/2010 9:15 PM (GMT -7)   
Read the book Breaking The Vicious Cycle By Elaine Gottshall

Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 4/23/2010 6:50 AM (GMT -7)   
Thanks Clarissa - I've ordered that now, ready fpr when I'm allowed foods again.... 4 weeks 6 days to go....

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 4/24/2010 4:05 PM (GMT -7)   
Hi malinki,
Another uk based person here :) my son was on the fresubin nutritional drinks (come in about 12 flavours) there were a few that he didn't like but many that he did(provided that they had been chilled first) )strawberry, chocolate, vanilla, good old neutral, banana, lemon, blackcurrant, capachino(SP)tropical, cola and lime, tomato to recall a few)The only thing he was allowed in addition to them was water and foxes glacier mints(seriously) he wasn't allowed the fruit ones, just the mints. he was on total enteral nutrition for 7 weeks(over xmas at that) and to try and make them a bit different for 'xmas dinner' I froze three of them in moulds, I should of put lolly sticks in them first lol. There was no way that he could eat them with a spoon :) He was also  put onto the steroids- it took longer to wean him off of them than the time that he was on the full dose. It now appears (for the time being) that things are going ok, he has gone from 9 tablets a day down to 2-been on  2 times anti-biotics, pentasa, entecort,vit D and azathioprine(which currently on)
It appears to take a while to find the drugs/treatment that will work for you but I am sure that it will happen
 

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/24/2010 5:17 PM (GMT -7)   
You want the good news or the bad news first? Yes, you will get better. That is the good. The bad news is this DD is INCURABLE. It will come back. Those long two decades ago when I learned I had this ( they thought UC at the time, tho..) Igot into remission very fast. Only to lose it equally as fast 6 weeks later. This crud is a constant series of ups & downs. We call the Downs "Flare Ups".
As not to be even more of a downer (sorry) I do welcome you here, the best support on the Web or anywhere for us CD patients. So sorry you are now in this club..

Sincerely,
Matthew

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/24/2010 10:08 PM (GMT -7)   
What if it's not DD?  You are a person that knows biology.  Where does he live?  Parasites?..Toxins?..Is there calcium loss?  Does he live on a farm? When was the last time travelled?...And where?

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/24/2010 10:27 PM (GMT -7)   
What I keep asking, is  where we live?  Let's start investigating why we have Crohns, where we were when we first started feeling 'crapty'- no pun intended.  think about it.  If you all could tell your stories then perhaps we can diagnose ourselves, or even better aid others in the future.  It is to do with moisture-please aide me with this...You can email me ...
 
*I have removed your email from your post so that spammers don't attack you, please put your email in your profile please.  Just quick control panel and edit your profile.*  Thanks for your understanding.

Post Edited By Moderator (Nanners) : 4/25/2010 8:09:08 AM (GMT-6)


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 4/25/2010 5:59 AM (GMT -7)   
Sorry to hear your not well. You have found the best place to find answers and get support for this disease.
I wish you well.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Malinki
New Member


Date Joined Apr 2010
Total Posts : 8
   Posted 5/5/2010 9:23 PM (GMT -7)   
Hi again all, 3 weeks in to the Modulen diet and I thought I'd pop back and give you an update. Still flaring but not nearly as bad, I seem to have 3/4 good days followed by 1 or 2 where I really struggle with pain again.

The hardest thing has been the act of not eating, watching people eat ges no easier - nor does being out and about around food stalls and shops!! At the moment I'd eat rotting food found at the side of the road!! (Its the act of eating I miss - I'm rarely hungry perse' I miss easting tho :( )

The modulen, steriods and 6-MP are definately doing something, hopefully its enough for me to regain normaility sooner rather than later although I've a doctors appointment today to discuss my first 6-mp related bloodtest results.....
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