Newbie Looking For Answers

[OZGuts]

Hi,

Quick history: I was diagnosed with Coeliac disease in 1998 and went on a strictly gluten free diet. When many of my symptoms continued I was then diagnosed with IBS. Now, after a pill cam and double balloon endoscopy (that can see much further into the small intestine than normal colonoscopies) they found ulceration all through my small intestine and have diagnosed Crohn's.

I'm currently on Pentasa granules (which apparently have better chance of hitting the small intestine) and have tried Naltrexone (for a few days), which gave me strong upper abdo pain, nausea and retching, as well as insomnia. Now my gastro has decided I have Coeliac, Crohn's AND IBS! I'm going to work on the Crohn's as that's where I think I'll make the most progress. Diet-wise I'm off dairy and fatty and spicy foods and have reduced my sugar intake.

Most of you probably have more serious symptoms than me and my gastro is reluctant to hit me with stronger drugs, but I have a few questions I hope some of you can help me with in my journey to improve my daily quality of life.

1) Has anyone else ever noticed they get abdomen pain that wakes them at or around dawn in particular? I seem to have pain often at that time but cannot find any information on why or if others experience that.

2) Does anyone know of an easily digested meal replacement or supplementation that I might find useful to help me rest my digestion or reduce the amount of food I have to eat and help me gain weight? I do not have dairy and I've been told soy sources may also cause problems. I'll have to check that your suggestions are available in Australia, but I'm interested in what sorts of things people take and don't suffer for.

3) I've found that salmon and oily fish seem to give me the runs but see that fish is best for both protein and omega 3. Does anyone else have problems with oily fish? Has anyone found Flax oil an improvement?

4) When people speak of being in remission, what do they mean generally? I have almost daily pain, tiredness, wind, and other symptoms but can go days without the runs. Do most people have normal digestion for some periods and are these the remissions, or does it just mean periods when their symptoms are a bit better?

5) My gastro won't tell me what to expect from the Pentasa in the way of improvement and says it could take a year before there are signs. I've been on it since December but haven't had any real improvements that I can tell (except maybe a bit less diarrhoea?). How long should I give it before I give it up if I don't see more improvement?

6) I have upper wind that leads to nausea and copious burping and sometimes even dry retching....are there any suggestions on what to take when this happens? It is particularly distressing when I'm out.

7) Finally, a gross one: I seem to occasionally pass clear mucus with wind, which is embarrassing and distressing because it's usually without warning, even when feeling relatively well. Any idea what it is and what causes it?

I thank you for any enlightenment and advice.

 

[Path_Of_Sight]

Hey Oz, welcome to the forum. I'm new here too, just joined a few days ago, and the response I've got from people has been great! So you've come to the right place, I'm sure you'll be able to find some helpful advice.

I've just got Crohn's, and it (cuttently) just effects my lower bowel, so I cant relate to a degree of your symptoms as they're to do with the small intestine, however I've had some similar experiences, which I've discussed on the forum, and I'll share with you what's relevant from those...

1) Abdominal pain that wakes you up- I've found that I get my worst symptoms at night/in the morning, and this seems to be reasonably common; I think the most popular theory is that that's the time when your bowel's most active/processing the food that's gone through your system, hence this would be the time when it's most aggravated. Time-specific symptoms seem very common, particularly at late night/early morning, so you're not alone in that.

2) Easily digested meal suppliment- I have been, and am still on(though in the process of reintroducing food) a liquid diet. I've been taking stuff called Modulen IBD, and I don't think it's got a very good rep here on the forum, probably due to it being a nestle product. Despite what others may think, I have to testify that I'm confident it's helped to rest my gut and allow it to recover, and it doesn't taste half bad either. It's a sort of creamy consistency, and I add raspberry crusha to it for flavour and it's pretty much just like a milkshake. It provides 100% of your daily nutrition, you just need a dietitien to work out the right quantity for you. Only thing is you have to get it prescribed, because the stuff costs a bomb otherwise. Another thing I'd recommend is Complan, which comes in a variety flavours, also full nutritional suppliment, and it's a hell of alot cheaper off the shelf. Not sure if it's available in Australia though. Both of these can just be taken to help put on weight, but if you were going for a full-on elemental diet, I'd recommend the Modulen, as it also contains an anti-inflamatory which helps your gut.

4) Remission generally means no symptoms. I haven't managed to achieve this for a great deal of time since I was diagnosed, just a few months, possibly a year, but I'm on azathioprine now, so hopefully that'll induce it for a bit. Sorry to hear your symptoms are so consistent, but I guess the same goes for most of us alot of the time...

That's all the input I can offer from my situation, hope it helps

 

[Kev]

Hey OZguts. Welcome to the forum. Quite a combo you've got for yourself there. I don't know if any of the general info folks here can share will fit well, given your particular complications. Couple of points.. oily fish... My docs, with the aid of a dietician who specializes in IBD.. placed me on a low fat, low fibre, low lactose, hi protein diet. A lot of oily fish, tho full of Omega 3, are too fat laden for my diet. It may come down to taking fish oil supplements, and folks with IBD have to watch the balance of Omega3/Omega6. There is a specific ratio range you probably need to aim for. Perhaps consult with a nutritionist. As for Naltrexone... my GI put me on the Low Dose Nalttrexone (LDN for short) regimen. However, the study from 2007 posted in the American Journal of Gastroenterology had patients on it for a 12 week trial. It has worked for me (knock wood) but it doesnt' appear to work overnite. And I don't think the way it works would allow it to. it resets the malfunctioning immune response, so the body... once the overactive immuno response is stopped, slowly begins to heal itself. If you didn't enjoy immediate benefits of naltrexone, and were at a 'low' dose... then I suspect it wasn't allowed enuff time to work. It doesnt' work for everyone, but it does have a pretty impressive success rate. I didn't have any side effects from it.. because the dose was sooo low, except for 'vivid' dreams.
I take my single 4.5mg pill after 10 PM, and, other than the occasional dream, no bad effects of any type. As for dairy products, one of my major trigger is lactose... found in dairy, milk, ice cream, cheeses... but also placed in margarine and orange juice, EVEN as filler in pills (drugs, vitamins, you name it). Could be even tho you avoid dairy, you too are sensitive. time to do a lot of research. It can be helpful to keep a daily diary, EVERYTHING to goes into you (food, meds, beverages, etc) THEN track the next few days to see how your body reacts. Its a lengthy process, but in time... with a diary, you can learn what sets you off. I don't know about dawn... this may not be what you are experiencing, but in my case MY worst diarhea of the day occured then, I think do to pooling of blood in my intestines overnite. It stopped being my worst 'D' episodes after I got the bleeding under control. However, my worst pains always occur after bedtime.
As for 5-ASA I've been taking it for couple of years. Never had any eurekas on it.. Some have been able to control their symptoms with it, think its a minority of folks I've seen post about. It's just an anti-inflamatory, like avg aspirin. My expectation of it would be that it may mildly alleviate some of my inflamation. I have a minimum (drs haven't seen my ileum) of all my remaining colon involved, so it's not surprising to me that it hasnt' been a miracle drug in my own case. I see it as a 'might help, most likely wont' hurt' drug most drs have to try, okay?

That's about all the info I have to offer you. hope some of it at least helps, OK

 

[OZGuts]

Thank you both for your responses. I'll look more into what you have said.

@ Kev, I was very hopefull of the LDN, particularly because of the reports that it has few side effects and high success rate...I don't understand why I reacted so quickly to it. I started it when feeling relatively well (to judge it better) had insomnia and strong upper abdo pain, followed by dry retching. I took it with a meal the next night but not much better, so the third night I lowered the dose to 1/2 of the 5mg dose, but still couldn't sleep and was sore. The day after I gave up and still had symptoms including the runs. I seem to be sensitive to most drugs (even painkillers), except for my occasional valium I take (Thank God!). The LDN was expensive so I was fully prepared to stay on it to see if there were some results after awhile, but when I wasn't sleeping and having all my worst symptoms hit me so much I wasn't confident I could continue. Like I said, I was surprised I reacted because the big news about it is that it has few side effects, so I was devastated. I still have the pills, though my gastro wants me to donate them so someone else can try them.

My problem with the diary is that my symptoms are diverse and often. I don't have periods of normal digestion that go longer than a couple days and so it has been difficult for me to track culperits down (I did diaries when they thought I had IBS). It got so that I only ate rice and low fat fish, and even tried a juice diet that nearly made me a skeleton (that's when I got my nasal-gastric tube). Now I try to not worry as much about food and rotate as much types as possible. Fat, dairy, and high carbs do seem to affect me though. Not easy with a gluten-free diet.

@ Path of Sight: I wonder why people don't like Nestle? I've never heard of that IBD one, and when I checked the website only found something called Peptamin in the gastro area. (http://www.nestle-nutrition.com/default.aspx). I'll look more into this. What's the main protein source in your suggestions? Are they broken down to amino acids?

Thanks everyone.

 

[D Bergy]

You could have reacted to the filler in your Naltrexone. Sometimes they use a lactose base filler unless you specify. This is usually the case if there is some intolerance. The sleep issues are from the drug, but they go away after a while.

You also could just be intolerant of the drug, but it would be very unusual.

Welcome to the forum, and I hope you can find a good treatment.

Dan

 

[Guest]

hi ozguts and welcome to the forum

 

[Kev]

Yeah, I echo Dan's thoughts that its the filler. to most folks, lactose is a safe item, and is widely used in the food AND drug industry. Since the specific dose of LDN requires a pharmacy make the pills from bulk naltexone powder, it wouldn't come as a big surprise if they used lactose to bind N fill the rest of the capsule blanks. I suggest you check into this... just in case. LDN has the potential of being a safe, exciting breakthrough in the treatment of this disease

The other odd part is the expense... I've seen reports from users in the US and other areas where the cost from pharmacies or other legit suppliers is about $1 or less a pill... some as low as $0.50 half a buck to a buck a day.. that isn't too bad a bargain. I never took mine with food... alway take it last thing at night before heading to bed. In the initial days, I did have some... welll, great dreams (SOB! Really miss those) but they didnt' last long.. No other side effects of note. But everyone is different. I wouldn't suggest jumping back on naltrexone to test the theory about lactose; but I would test for intolerance or sensitivity to lactose. Been there, done that.. my life has improved greatly now that I know I'm sensitive.. and have learned to adapt N avoid it like the plague

 

[OZGuts]

Thanks for the welcome everyone.

Yes I do have a sensitivity to lactose. My GP did some test that determined that. I do have some digestive enzyme pills that have lactase in them...would they offset the lactose do you think? I wonder how much lactase I'd need?

Do most people who have tried Naltrexone find it helpfull, or just some? And what does it tend to help exactly? I don't know if I should try taking it again. I could try and phone the pharmacist that made up the pills but its been a few months since I tried it; he may have forgotten! It is quite expensive here in Australia, but if it worked it would be worth it.

Anyone found a non-dairy non-soy liquid meal (gluten free) that doesn't cause more runs etc...so is good for Crohn's? I'm still thinking that if I could eat less food and supplement then my digestive system may have some better periods. I seem to daily have some symptoms, even if it isn't as bad as some of what others have to put up with! I can at least function for the most part but I just don't feel well often.

 

[D Bergy]

The LDN works for most people to improve Crohn's symptoms but I am sure it is not always a perfect result.

It helps make the immune system work more normally. At the root of the problem is an improper immune function for whatever reason.

My personal theory is it helps the immune system to kill off the bad bacteria in the intestinal tract that brings the symptoms on. It is not a super fast process, and it will not usually go in a straight line as far as improvement goes. But over months symptoms should be considerably better that they were at the beginning. Of course there are a minority of people that it does not seem to help.

There are other fillers the pharmacy can use, so I would just have them use a different filler. Otherwise you really can not tell if the you are allergic to the LDN or if the filler is causing problems.

Dan

 

[Kev]

Yeah, if one is sensitive to lactose... well, for me.. I slowly found N eliminated all the lactose in ALL my foods... yet I regularly had extra-nasty bouts that seemed to be on a pretty specific schedule.. couldn't put my finger on it till one day, it did not show up.. went to my diary, looked at everything... and noticed I had failed to take my fancy brand name vitamin.... checked the ingredients, voila.. 'lactose'. it almost hit me like somebody was kidding me, playing with me.
how much lactose is in a pill... but trial N error proved that skipping just that 1 pill stopped that peculiar episode (I won't go into the details of what made it stand out from the rest).. Even when I found a brand name vitamin without a bit of lactose in it, and was able to take it w/o issues, I still found it really hard to believe a small amt could cause me issues. Fast forward to my imuran trip. I became toxic at 100mg. doc took me off, kept me off for 2 weeks, then I took a single 25mg pill to see how i'd react. 1/4 dose damned near put me in hospital

made me a believer.. if you are sensitive, allergic, whatever... trace amounts do seem to be enuff to trigger episodes. A simple oversite, but I'm betting your pharma used lactose (milk sugar powder) as a filler.. just food for thought, OK

as for how it works, from my limited understanding, it resets your offset immune response... so, instead of the body over-reacting, eating away as itself... it slowly allows a 'normalized' immune response to try to heal things. Its a slow process, and there can be times when the bad guys seem to win; at least for a bit. Sort of like dealing with a bad flu... some bounce right back, but it can also turn for the worse. Afterall, our bodies have been sick a long, long time.

anyway, not trying to peddle my personal treatment. and, I've seen warnings posted about not going above 4.5mg... so I wonder if that threshold level is a crucial specific. you may want to talk to the folks at the lowdosenaltrexone.org

 

[OZGuts]

I phoned the pharmacist and he says he used micro-cellulose with a gelatine capsule. He doesn't think .5 more than the 4.5 would make a difference...

I guess I'd better get the courage up to try again and see what happens. I'll visit the recommended site too and ask there.

Thanks for your suggestions; it really is frustrating to find something that should help and is low on side effects, except for me. Maybe I felt relatively good but was heading downhill and didn't know it and the pills just happened at the same time and made it worse? Who knows with this illness...you can barely track anything: too many factors.

 

[Kev]

Well, I wouldn't have thought that .5mg would make a difference either, but that site I mentioned.. and it consists of LDN users... have posted warnings to all about exceeding 4.5mg.. In fact, they suggest folks opt for pills in smaller doses, 1.5mg... and that way, you can raise/lower your dose 1.5, 3.0 or 4.5 as needed.

A second trial is underway... and in the 1st, patients were provided the drug for a 12 week period.. Even if the drug is effective on a person, it is their own 'fixed' immune system that slowly reverses the damages from this disease. The response depends on how fast/slow your immune system reverts to normal, the job it does on the affected areas, the extent of the damage, and the level of aggressiveness in your particular disease. Anyway, it's good to hear that the drug wasn't compounded with lactose filler. The site may advise you to quit smoking (if applicable) and perhaps try the SCD diet in conjunction with the LDN

 

[pennywanna]

Has anyone tried digestive enzymes, it helps break down the food instead of running thru and some help with lactose, because French fries are the only non dairy food that have lactose (dont eat them, but some of you might) I take digestive enzymes before my meals and it helps. Also here in Canada, not sure in other countries if they have rice milk that is enriched. I use them and Almond milk too. Takes a while to get used to it, some health food stores have it. IBS, with Crohns is very common, it took 8 months of testing and finally surgery to find out I had Crohns. Went to a teaching doc in Toronto, he found it in a few seconds...too bad I didnt see him first.

And Kev I have to tell ya, sometimes I come on here just to see if you can make me laugh some more,,,, laughter is the best medicine!

 

[OZGuts]

@ Kev: I think if I do try this again I'll empty some of the capsule and start small anyway. I don't smoke, drink, and I've done very restrictive diets in the past due to paranoia and hope and so will only limit my diet a bit now. Despite being on juice diets (which put me in hospital with a nasal feeding tube) and soluble fibre only diets with fish, and even a rice-free diet (which for a coeliac that is almost impossible!) I still wouldn't feel well. I do see some foods have a reaction though, and so I try to identify them...

@ pennywanna: I've used digestive enzymes for protein, lactose, and carbs (a variety of brands) but didn't find they did much for me. I still take one with any pill (like my occasional valium for sleep) that has lactose in it though.

 

[Path_Of_Sight]

Hey, sorry for the late reply. Here's a website with some information on Modulen IBD http://www.nestle.co.uk/Nutrition/HealthcareNutrition/SpecialistFeeds/ModulenIBD/

The main protein source in Modulen is casein, which is naturally rich in TGF-ß2, and known to have anti-inflammatory properties, promoting healing of the gut wall.

Not sure what the main protein source in Complan is though...

 

[OZGuts]

Thanks for that...the local IBD society suggests that Modulen IBD too, but I'm still worried about the effect of dairy products. I'll probably give it a go to see how I go. Can't lose really.
I guess maybe elemental is the other option...but don't know what would be best with them and hear they are pretty expensive.
I've been trying a protein drink made from rice protein, but not sure if it is helping, and it certainly doesn't improve how I feel. Maybe a bit longer....Oh well keep trying stuff and hope

 

[Kev]

I wouldn't suggest tampering with the pills... I would strongly suggest asking they be made in increments of 1.5mg.. That way you can go from 1.5, 3.0 or 4.5 dosages depending on your reaction. The medical component of the pill is way too small to try to modify.. a lot of the contents in the pills will be just the fillers.

There is a method to take 50mg Naltrexone and using sterilized water transform it into suitable dosages.. but you have to be extremely careful not to allow any contamination in, and the liquid derived has to be administered using an eye dropper that is marked correctly in ML.. and it has to be refrigerated. It also means the eye dropper, etc., have to be routinely sterilized. There is info at the LDN website. It is much safer, easier, if one can get a legit pharmacy to make the pills from bulk naltrexone powder. This option is for those who can't.

You know, there's a point, not sure exactly where it is, when a person can slip from trying to be helpful ... to being downright interfering or even controlling. I don't want to cross that line. LDN may not work for you, it isn't right for all. you will have to make that decision for yourself. Just that there can be obstacles in taking LDN, AND some of these can be resolved. I've read some of the posts on the LDN website where folks were initially stymied in taking it, but did find a work around... Problem is, there isn't a work around for every case. But one doesn't know that without trying them. Even going thru them all, LDN still may not be a solution for you... and there's very little 'medical' support exploring it.

 

[OZGuts]

I wouldn't suggest tampering with the pills... I would strongly suggest asking they be made in increments of 1.5mg.. That way you can go from 1.5, 3.0 or 4.5 dosages depending on your reaction. The medical component of the pill is way too small to try to modify.. a lot of the contents in the pills will be just the fillers.

There is a method to take 50mg Naltrexone and using sterilized water transform it into suitable dosages.. but you have to be extremely careful not to allow any contamination in, and the liquid derived has to be administered using an eye dropper that is marked correctly in ML.. and it has to be refrigerated. It also means the eye dropper, etc., have to be routinely sterilized. There is info at the LDN website. It is much safer, easier, if one can get a legit pharmacy to make the pills from bulk naltrexone powder. This option is for those who can't.

You know, there's a point, not sure exactly where it is, when a person can slip from trying to be helpful ... to being downright interfering or even controlling. I don't want to cross that line. LDN may not work for you, it isn't right for all. you will have to make that decision for yourself. Just that there can be obstacles in taking LDN, AND some of these can be resolved. I've read some of the posts on the LDN website where folks were initially stymied in taking it, but did find a work around... Problem is, there isn't a work around for every case. But one doesn't know that without trying them. Even going thru them all, LDN still may not be a solution for you... and there's very little 'medical' support exploring it.

I can understand what you are saying about the border between help and push but I don't think you've crossed it. I ultimately make my own decisions but it is very helpful to have different perspectives and people who offer possibilities. It then becomes my job to decide what I want to do. All the information I can get the better but it is also good sometimes to take a step back and just absorb what I'm hearing and stress less for awhile.

I'm thinking of a strategy that involves trying the Modulen IBD first to see if I tolerate that. I'm also thinking of getting off the Pentasa to see if I feel better or worse. I can always go back on. Then finally the IBD society here in Queensland has suggested I see a gastro specialist in Crohn's and IBD in Brisbane (2hrs away from where I live), so I think I'll go for at least one appointment and see what he can offer as advice. My other gastros have not been involved in a specialist IBD clinic like him. I'll bring up the Naltrexone with him and see what he has to say. If I'm not satisfied with what he says I may still try it again.
Thanks for your advice, and I'm always prepared to listen to options.