Ensure Plus Diet - Crohns of the lip

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.   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.

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

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.

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.

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.

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

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.

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

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.

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.

I guess your onto it cause I can't find them now.
tess

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.

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..