Ensure Plus Diet - Crohns of the lip

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margesimpson
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Date Joined Oct 2007
Total Posts : 5
   Posted 10/26/2007 11:09 AM (GMT -7)   
I am 28 year old women and have just been diagnosed with Crohn's disease with no symptoms other than a swollen upper lip. I have family history of Crohns on both sides of family and my mum had colitis (she died 2 weeks ago). It appeared in Feb this year after having my third child and putting my house up for sale - It was rather a stressfull time I don't know if this caused it to happen or not.  My lip swelling would be intermitant at first but recently has become perminant.  After months of seeing all kinds of specialists and having a lip biopsy they finally put it down to crohn's even though my isotopic scan showed that my bowels were ok.  I have now been put on this liquid diet and all I can have are these ensure drinks.  Although I quite like the milkshake drinks it is terrible not being able to eat anything - especially when I am cooking and feeding the children.  I have managed 1 week and 4 days, I have another 2 weeks and 3 days to do but then I have to gradually introduce food.  Has anyone ever done this?  Was it successful? What are the first foods introduced and how long before you are eating normally again. I just can't wait to go out and have a meal and a bottle of wine I just feel so depressed. sad   Is there anyone out there who has just a swollen lip and no other symptoms or did the symptoms come later.  They did give my an option to go on tablets instead but adviced that I tried this first. Some days I think I should have opted for tablets but I know I would have been mad at myself for not trying this first.  I have called myself marge simpson cause that is what I look like with my swollen lip - I'm getting married next year and am desperate to get it sorted.  Has anyone any advice or in the same boat.

JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 10/26/2007 12:12 PM (GMT -7)   
If you have no abdominal symptoms, and the scan showed nothing abdominally, I'm not sure why being on a liquid diet could/would help you?
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


gemini kiwi
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Date Joined Nov 2006
Total Posts : 1136
   Posted 10/26/2007 12:19 PM (GMT -7)   
When you say you have swollen lips, do you have some kind of ulceration their?. I personally have never heard of Crohn's on the lip.
Tess

margesimpson
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/26/2007 12:21 PM (GMT -7)   
 Thanks for you relpy.  Yes I know what you mean but my lip does seem to be going down since being on the diet.  My specialist told me that you can just have crohn's diease which only affects the lip but nobody seems to have heard of it before.  I do feel alot better in myself since being on the diet I have more energy etc.

margesimpson
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/26/2007 12:28 PM (GMT -7)   

No there is no ulceration it is just swollen like a simpsons character/Lesley Ash and it is numb.   Apparently it is very rare all my white blood cells have gathered in my top lip they call it Oral Gramulomas Disease caused by Crohn's. 

It doesn't really add up to me which is way I'm come on this message board.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2007 3:13 PM (GMT -7)   
Hi I am glad it is going down and congrads. on your up coming marriage. Sorry to hear about your Mom .I know stress can cause CD to act up .It is a long time for you to be on ensure. To start off I would think your Dr. would probably try to introduce you to liquid diet after being off foods that long. What kind of tablets was your Dr. suggesting? lol gail

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/26/2007 3:31 PM (GMT -7)   
Hi there,

Yes, you have a real rarity. The official name is orofacial Crohn's disease (meaning that it effects the oral cavity and the face). People do get orofacial symptoms alongside Crohn's in other places, but having it present only in the orofacial region is pretty atypical.

Congratulations on your persistence with the liquid diet. I'm glad it seems to be working for you. It's an treatment for Crohn's disease that is rarely used in the US but is more common elsewhere (the technical name for the all-liquid diet is total enteral nutrition). It's been tested in quite a number of clinical studies, and is very effective in small intestinal Crohn's disease, and somewhat less so in colonic Crohn's. There are only a few rare reports about its use in orofacial Crohn's, simply because that presentation of Crohn's disease is so rare, but it was effective in those cases. The benefit, as you realize, is avoiding steroids. The disadvantage is having to give up regular food for a while. It must be particularly difficult since you have to prepare food for others. Could you get the kids/fiance to trade off and handle the food preparation until you are back on a regular diet?

As far as putting up with it goes, maybe you could focus on all those nasty side effects of steroids that you aren't having to live with? Try doing something else to keep you busy until a food craving goes away, a crossword puzzle, for instance, or picking up a book, or going for a walk?

Regarding your question about reintroducing food, different doctors do it different ways. The main thing is to take it easy on how much you eat for at least the first day or two so your stomach can get used to handling solid food again. By the way, the fact that you are feeling better/more energetic, not just seeing improvement in your lip, suggest that you did have some Crohn's disease lurking elsewhere in the intestinal tract that was affecting absorption of nutrients. Absorption is probably improving as the enteral nutrition puts your disease in remission. Anyway, I hope this answers some of your concerns, and good luck with the rest of your treatment.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/26/2007 4:17 PM (GMT -7)   
I go from liquids and broths to smoothies and then mashed potatos, rice, toast, bland soups, applesauce, then plain pasta etc. Then maybe plain chicken and finally a regular meal. Im not always this diligent though and it sounds to me like you were asked to be on liquids for a really long time.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/26/2007 4:39 PM (GMT -7)   
I have cd of the mouth that also involves the inside of my lips. I was given a steroid based mouth rinse, that I had to swish, swirl and
swallow. I'm also on a maintenance dose of steroid. Disease is active in my illeum, sigmoid colon & rectum, but I have not been advised
to go onto a liquid diet. So like Judy I'm somewhat surprised. The only time I have fluids only is if I believe I'm obstructing, or I actually
am. It's an interesting post...Thanks.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 10/27/2007 1:19 AM (GMT -7)   
Margesimpson,
I would like to first welcome you to the Healing Well family. This is such a great place to vent, ask questions, etc...it is a wonderful resource of information, but most importantly it is a warm and accepting group of people who truly understand, and who truly care about one another.
I am terribly sorry to hear about the death of your mother. This must be an extremely difficult time for you. That alone is soooo difficult to deal with. Add to this the fact that you can't eat, have a family to care for, and are planning a wedding. Good God....Do you have any kind of support at home in your home town. Someone who can care for the kids for a while so you can get some rest. You are going to fall from shear exhaustion.
Congratulations on your upcoming wedding. Hope things get better for you health wise very soon....come to us often ok.

Love and prayers to you
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


Supermomof4
Regular Member


Date Joined Sep 2007
Total Posts : 22
   Posted 10/27/2007 6:20 AM (GMT -7)   
Welcome! Stress does caused Crohns. Everytime I am under extreme stress my crohns would come. Having 4 children the youngest - 1 years old - I completely understand about stress. Now, after a lovely resection - I feel I have new lease on life. I was on a liquid diet for almost 3 weeks. It is hard but if it helps you it is so worth it. I have never heard of Crohns in the lips - but it actually makes sense after "Mary's Post". I hope you feel better soon.

Deana

margesimpson
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/27/2007 9:10 AM (GMT -7)   
Thank you for all your support and I do feel better after reading your posts. I am still muddling through on the diet and will let you know how I get on. Thanks again.

Joanne

JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 10/27/2007 10:31 AM (GMT -7)   
Okay, I really don't understand what being on a liquid diet is going to do to help your lip? A liquid diet is usually used so it's less stressful on diseased bowl. Does the liquid make it less stressful on your lip? I must not be understanding something.

I wish you all the best, but I'm thinking you'd be better off on some sort of medication and not the diet in your case.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


margesimpson
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 10/27/2007 12:45 PM (GMT -7)   
I totally understand where you are coming from.  My consultant is just exhausting all avenues before putting me back on steriods.  When I was previously on steroids my lip did return back to normal but there were the side effects.  I'm willing to try anything. 
 
Vicky, you've mentioned a steriod based mouth wash - did this work?  This is not something I've been offered yet.
 
 

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/27/2007 12:51 PM (GMT -7)   

So sorry to hear about your Mom. My Dad died a few weeks ago and it did a number on my Crohns. I was in terrible stomach pain and nauseous and had some diarrhea again. I was miserable and so weak. I think the emotional stress put me into a flare. Once I started to relax a little I am feeling a little better. 2 weeks seems pretty recent, I would not be surprised if that is causing you some problems.

good luck and I hope you get some relief soon. I bet all the emotional stress in your life is aggravating the disease some too.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, waiting on a EMG nerve test right now...


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/27/2007 1:59 PM (GMT -7)   
Joanne, it;s been like taking baby steps. I've had the medicine for 2 months, I'm now free of my really bad mouth problems. So I
would say, that to use something topical, that gets directly on the spot would be useful.
I wish you well...
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/27/2007 2:52 PM (GMT -7)   
The mouth rinse is called Dr. Poppavich's solution. It was first prescribed to me by an ENT doc, who was the first one to tell me I had
crohn's of the mouth.It is by prescription only and it contains, tylenol, benedryl, decadron (steroid) antibiotic and nystatin. Hope this
helps.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/28/2007 7:37 AM (GMT -7)   
Judy,

Regarding your question, nobody knows exactly why these special liquid diets work, but it's more than just bowel rest. They have a systemic anti-inflammatory effect, which is why they can be helpful for symptoms outside of the G.I. tract. For instance, use of total enteral nutrition has been shown in several studies to decrease release of pro-inflammatory cytokines (proteins that cause inflammation) and reduce sed rate and C-reactive protein.

Hope that explains things a bit.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/20/2009 8:08 PM (GMT -7)   
Hi Margie,

Just a note to say welcome to the forum, and let you know how sorry I am about all the stress you've been dealing with lately, and especially the loss of your mother. What a distressing time you've been having...

If you click on the "diets" link in my signature, you can find some of our best threads on nutritional therapy for Crohn's. You might like to read the links about Modulen and elemental feeding, as these might encourage you and answer a few of your questions.

All the very best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/20/2009 8:20 PM (GMT -7)   
Ivy not sure how to do a PM to you but if you read the 2 posts before your reply ..............its a very old post..................................... the person has made dafts comments on.
tess

gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 9/20/2009 8:22 PM (GMT -7)   
I guess your onto it cause I can't find them now.
tess

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/20/2009 8:28 PM (GMT -7)   
Gosh, it is old, isn't it? I didn't realise - silly me.

I'm going to let those two odd comments stay for the time being - sometimes, if someone is very ill or on lots of painkillers they can end up sounding sillier than they intended, so perhaps we should give this person the benefit of the doubt for the time being.

If the comments persist and there's no mod around, please send Peter an alert so he can deal with it.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 9/21/2009 3:22 PM (GMT -7)   
I had my lip swell up with my last major flare up. It was HUGE, and scared me quite a bit. Went down the same day though, lots of benedryl and started prednisone. But I was also have major stomach symptoms, diarrhea and the whole works. But yes, it can affect your lips.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


huni
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/13/2011 4:52 AM (GMT -7)   
:-)  i i am new to this site, i just want to let you know my 11 year old son was diagnosed with crohns disease 12 month ago, he also went on a liquid diet for a total of 6 weeks , basicly to give his bowels a rest and it really helped him.crohns can effect you anywere from your mouth to your ankles, ie blisters pins and needles raised spots on the skin, a whole number of things really.hope all goes well for you :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-)

Ian12345
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/15/2013 8:05 AM (GMT -7)   
Hello Marge Simpson,

I have recently been diagnosed with exactly the same symptoms as you. I have a permanent swollen upper lip (orofacial granulamotosis), but no signs of internal Crohns and Im not sure what to do. It would be a great help if you could tell me how you have dealt with it. I realise your post was from 2007..
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