New member, saying Hi and with a few questions

Finally joined after years of living with Crohn's. Looking at making some lifestyle changes and wanted to talk with others who might have some insight.

I was diagnosed with Crohn's about 9 years ago. After vomiting/heaving for 4 hours my girlfriend called and ambulance and got me to the hospital, turns out I had an ulcerated length of small intestine. After a couple weeks of testing and a colonoscopy I was diagnosed with Crohn's. I was on Asacol for ahile after my diagnosis, but I haven't been on medication for the last 5 years or so because of issues I had while taking it.

I've seemed to be able to manage my symptoms by trying to keep my stress level down, which isn't always easy working in IT.... but I'm starting to have more issues recently and have decided to try to make some life changes.

I'm starting to go to the gym more, but one problem is that I don't eat enough. I don't get hungry most of the time, and when I do it's very hard for me to eat. about a year after I was diagnosed with Crohn's I startedd having ALOT of dental problems and have had 12 teeth pulled, the practical upshot is I currently have no chewing teeth anymore. I'm looking at going on a lquid replacement diet and would like to at least see how things stand if others have done the same.

My wife works at a gym and we've got a couple things of the Muscle Milk protein mix. I didn't know if anyone has any experience with that but I am also looking at things like Ensure or other meal replacement "shakes" or drinks.

I'm lactose intolerant, and I've been reading what I can, but there is only so much I can find out from just looking up info. I'm trying to find out as much information as I can so I can at least have some information to talk with my Dr about.

Firstly, welcome to Healing Well.

Going unmedicated with Crohn's is not a good idea, no matter how you feel at the time. That's because the disease has a natural tendency to get worse and cause damage over time, even if you can't feel it. Even meds won't necessarily stop this - some people respond to meds very well, others less so. But doing nothing at all is virtually a recipe for future trouble.

There's plenty of other things you can try besides Asacol, including other 5-ASA drugs for a start. Then there's the immunesuppressants, ie 6MP, Imuran, and finally an even stronger class of drugs known as biologics, ie Remicade, Humira. Steroids are used short-term to knock a flare-up into remission. You should talk about going on a med with your doctor.

A liquid replacement diet is a possibility: be warned, it's grim. (I've been on one in the recent past and am on one again.) If calories are an issue, then it's definitely easier in my experience to get calories through calorie-dense drinks than food. There's two types of liquid diet: non-elemental and elemental. Non elemental includes Ensure, protein drinks, milk, fruit juice, etc. - just everything that you would eat or drink normally. Elemental drinks are specialist medical drinks which have had their nutrients broken down into the simplest possible forms, ie protein into amino acids, carbohydrates into glucose, fats into fatty acids. This ensures the drink gets digested in the upper part of the small bowel, bypassing the rest of the intestines.

A doctor would have to prescribe elemental drinks for you, whereas you can obviously buy your own Ensure, etc.

The good news is that if you can't go on an elemental diet, a non-elemental liquid one is, according to studies at any rate, just as effective.

Liquid diets aren't meant to be done long-term though. Typically you are on them for 4-8 weeks, then begin a reintroduction diet. This can be done in different ways, but usually a single food is introduced one at a time for a couple of days. If you tolerate that, then move onto another food, and so on.

Liquid diets have a good track of getting folks into remission, but unfortunately the results aren't long-lasting; the Crohn's comes back. That's another reason why diet alone usually isn't enough to control Crohn's. Also, if the damage in your intestines is caused by rigid scar tissue (caused by repeated ulceration/healing) rather than inflammation, then nothing - diet, drugs - will heal that. The only way to get rid of it is through surgery. Unfortunately there's no test which distinguishes between scar tissue and inflammation, so the only way to tell which one you have is through trial and error; if it goes away with meds/liquid diet, it was probably inflammation only.

Hope this helps...

Oh, no we are all about the belly complaints here! This is an open forum for all of the "impolite" questions and comments you might have. Believe me, it's been discussed here if it has to do with what goes in and what comes out the other end.

I'm sorry to hear about your employment situation. And I totally get it about the cost of meds. I've recently switched my meds so I'm taking only generics these days. I'm insured, so my copay is low, but even without that I'd hope that generic meds would be affordable at some level. Also, many pharmaceutical companies offer discounts for those who need it; please ask your DR or ask here.

I want you to focus on feeling better. I am confident that you can get back to a place where eating doesn't hurt. There are those here who swear by dietary changes and certainly there are things you can do right away that will probably help, even if just a little bit.

For example, some oils like flaxseed oil and fish oil are very high in anti-inflammatories. If you can find some unrefined [organic] flaxseed oil at a health-food store or Whole Foods, you can use a teaspoon or two on a salad or in a smoothie every day and that will be a nice way to get some healthy omega-3s in your diet.

You can eliminate gluten and see if you feel better. You should give it a good shot [complete elimination] for 2 - 4 weeks before deciding whether it is worth it. Gluten is the protein in wheat, barley and rye and is often a part of a processed food. So it's easiest to do a gluten free diet if you prepare your own food, at least for the trial.

Nah, you don't sound like a complainer to me. An example of 'bad' complaining is my picture-of-health SIL going on to my mum for 15 minutes today about her cold. I actually felt a bit incensed when I heard that, but that's another issue.

The situation with your teeth sounds fairly horrific; sad thing is it was probably a consequence of the Crohn's. What's done is done, and that, but I do hope you manage to get permanent dentures.

I do understand about losing enjoyment in eating and having anxiety attacks after eating, too. I'm a bit of a foodie, though, so I have never quite - except temporarily - been able to lose interest in eating entirely. Even on a liquid diet, I express my interest in food through making soups, custard and so on. Unfortunately, while I don't obstruct on those foods, they do cause me symptoms and it's starting to get to the point where I'm getting fed up with the symptoms again. I'll soon be going on a much stricter liquid diet, probably an elemental one.

It does actually sound like a liquid diet might be a worthwhile thing for you to try. It has the added advantage in that the reintroduction diet afterwards is a good way for testing for food intolerances.

Personally I think your problems with eating are more likely to stem from active, uncontrolled Crohn's for many years rather than food intolerances. (Not that food intolerances couldn't play their part as well, but to me it's a question of the chicken and the egg: which came first, the food intolerances or the Crohn's? In my case, I think I developed my symptoms as a result of Crohn's rather than vice versa, as I never used to have food intolerances, GI distress, etc. at all.)

At any rate, that said, some foods inevitably cause more symptoms than others, so it's certainly still a good idea to tinker around with your diet.

I hope one day you can enjoy eating and food again. Best of luck.

EDIT: I was too slow as usual - your last post wasn't there before I posted... :-/

No no, thank you, NCOT! I appreciate anything, especially since everyone here understands what it's like to go through these things.

My wife tries, but it's not something she can truly understand.

I agree that some of the intolerances I have may be because of the symptoms. I've become intolerant of things I used to be able to eat fine such as different types of nuts and such.

And the teeth situation is bad, and makes it hard for me to eat anything approaching normal since I can't chew things as much as I am supposed to and sometimes, i.e. most of the time, have to swallow pieces larges than I should since you can only cut things up so far, y'know? :shrug:

One of the most embarrassing things I have to deal with, and I don't know how common it is, is anal leakage.... not even really from diarrhea. I don't even know a good way to bring that up, so sorry if it came out wrong.... badump bah! The strange stomach sounds are somewhat impolite sometimes, but the other is what bothers me most. I try to keep tabs on things I eat, but it doesn't seem like the same things cause it every time.

And I will put something up with that specific thing soon, then. I understand I may have put too many rambling different things in, especially since it's my first post. I've got an appointment in a few days and will kind of see where that goes, then post and see what a consensus is.

Thank you both and I will take your suggestions/advice to heart! It's just good to me to finally get somewhere with others who understand.