Mild Crohn's

Hi all,

I'm a 22 year old male. I got diagnosed with mild Crohn's disease 4 weeks ago. I'm not sure what triggered the disease in me, but asides from genetic predisposition I'm suspicious that Accutane treatment for acne and campylobacter food poisoning were lead causes.

I found hope in nutrition potentially being a cure for this disease - and since my disease is labeled as mild, I figured my chances were good. I stopped pentasa after consulting with my G.I. and started the paleo autoimmune protocol, slowly introducing one food at a time (similar, but even more restricted than SCD).

It's been 4 weeks now and my bowel movements have gone from 4-5 relatively loose to 1-2 solid on a good day (I would say almost normal digestion). On the other hand, I'm having low-grad fevers several times every day and for the first time ever I'm having abdominal pain from this disease.

-I'm wondering if the colonoscopy itself has caused me to enter a flare-up and if the symptoms I'm dealing with now is caused by this flare-up?

-Since my bowel movements and stool quality have improved I hope that the gut lining is getting time to heal and that the symptoms I'm having probably will fade away if I give it enough time?

-Can anyone relate to my situation?

I would really appreciate any advice and comments on my situation. If there's anything that you think might help me please let me know.

All the best
-Mathias

Honestly? I don't know. Mild Crohn's can go one of two ways; it can remain a lifelong mild disease or it can develop into something more severe. Unfortunately, as of yet, there is no way of telling at the beginning how Crohn's will progress. If you had the latter type, I would recommend getting onto a strong med (Remicade, preferably) straight away, as there is some evidence that treating Crohn's aggressively from the start improves its prognosis. However, Remicade is overkill for somebody destined to have lifelong mild disease, so it's a dilemma.

I'm a bit sceptical about Pentasa, as some studies have shown it to be no more effective than a placebo for Crohn's. On the other hand, I worry when I hear somebody isn't on any meds. I can't help feeling like Pentasa is better than nothing at all.

As far as diet is concerned, I'm sceptical about that as a sole means to treat Crohn's. People who are on strict diets often seem inclined to attribute their improvement to the diet alone, no matter what other meds or supplements they may be taking. The only evidence so far for diets like the SCD and paleo is anecdotal evidence. That's obviously enough for thousands, but it leaves me feeling a bit uneasy; I just can't help feeling diet may be enough to control inflammation, but not the complications of Crohn's such as strictures, fistulas, etc. The fact that you are already suffering from low-grade fevers is an ominous sign to me, since that indicates active Crohn's.

I dunno. In the end, you have to decide what to do about treatment. I agree with Myrne 100% though. Keep in regular touch with your GI and monitor your disease.

Thanks for your advice guys. Much appreciated!

I was on pentasa for around a week before I consulted with my doctor about the diet and we agreed that it was a good idea to try - as long as I had follow-up after a few months.

I scheduled a new appointment with him next week to tell him about my progress.

I think the abdominal pain is more related to hard stools than ulcers - because the pain is not specifically in the illeum where the ulcers were. It also seem to be relieved by gas.

Thanks again!

Add another that doesn't really believe in any diet alone to treat Crohn's disease. IMO I have a disease where my body is attacking itself. I don't feel I have an allergy or a problem with food. When I'm well I can eat everything I want! To me it's also about quality of life. Having to live so strict with everything I put in my mouth is a lower quality of life for me. Of course we all have to decide what is best for us.

I was told I had mild Crohn's. Even though I had an ulcer that almost made me bleed to death back in 2006. I've also had a rectal fistula, and some nasty flares with Erythmea Nodosum and joint involvement. I believe I've seen my disease progress over the years. Compared to some though mine is more mild. I can usually get a few years of remission in between flare ups. This year has been different (6 months between flares). It's unfortunately a very sneaky disease that likes to sneak up on you out of no where. I take Asacol as a maintenance medication right now. I feel it's important to be on something since it can be so quiet in there doing damage and we only find out when it's in dire shape.

Hi Mathias. I've been DX for 12 years now. During that time I've had years were I was not on any medication and was able to deal with my symptoms on my own by watching what I ate. But that's all I was doing...dealing with my symptoms. I still have a disease that's tearing up my insides silently. But I didn't want to take meds all the time...I often forget them on a daily basis and so I chose to just take meds when in a flare and my symptoms got so bad I couldn't deal with them anymore (I.e. tons of d, intense pain, sometimes blood in vomit or stool). But now it's gotten to a point where I'm flaring much more frequently and with more debilitating symptoms. Now I wonder if this could have been prevented had I opted for maintence meds the past 12 years. I'll prob never know.

My point is don't settle and don't sell yourself short of a higher quality of life with this disease. We all have to make a choice that's right for us what options to take to achieve remission. My concern for you as others har mentioned would be your low grade fever...indicating your disease may not be in remission. I would certai ly discuss options with your doctor and ask his opinion. Good luck

Mathias- I disagree with those that say this disease cannot be managed unless you are on medication. Each person is different and what happened to one doesn't mean it will happen to another. Medications bring side effects and those side effects can be worse than the disease itself. I am prime example of that. I was given Prednisone which caused Avascular Necrosis to both knee joints (which either leads to complete joint failure or major surgeries) and due to the AVN I started another medication that caused my crohn's to spread from my sigmid colon to throughout my colon, small intestines, duedenum and stomach in a matter of 2 months time. Due to the rapid spread of disease, my medication was changed to Apriso which caused me to get Pancreatitis the very next day after only taking one half the prescribed dose. So, as you can see, there are serious risks with medications and in fact, I will never forget what the Hospital Dr told me when I was in the hospital, he said that medication is nothing more than controlled poisoning of the body. I am not saying that medication is not called for but I am saying that if you can control your disease with diet and supplements, that is what I would try first and work from there.
As for your fevers, there are many reasons for fevers and if your stools are near normal or hard, I would advise my GI and ask for blood tests to check my CRP.

I wish you the best!

I tried doing a food diary, as that is what a lot of people recommended. Taking out foods that I felt made me feel worse. Unfortunately this wasn't an exact science either. One day someone would make me feel worse, then next I could eat it just fine.

I've tried eating foods that are supposed to anti-inflammatory. I've tried going Dairy free. Mostly now I'll not eat things when I'm flaring that I know will make my symptoms worse.

But until my doctors say there is proof that I have some kind of food allergy, or that that is what causes a Crohn's flare up. I'm not going to cut out things like gluten. I don't believe this is an allergy disease. And as I said, I couldn't hang with some strict diet. That's a quality of life issue.

I'm not thrilled with the side effects of medications myself. But to me it's a necessary evil. I almost died after going a DECADE without medications (they couldn't find a diagnosis that whole time). There was a lot of damage in there, and I almost bled to death. The only time I'm hospitalized now is if I've let a flare go a little too long without getting on some steroids. Sucks, but to me that's the way it is.

Thanks for the responses guys!

Hello Mathias,

Can I ask how many Pentasa you were taking a day? It could be that still taking them but in a lower dose may help.
DS was taking them(in themself not enough to stop his symptoms so was also put on Azathioprine) Once this kicked in was told by GI to stop the Pentasa, tried this twice neither time sucessful, we needed to double his pentasa for a week or so to get him stablised. Was told by IBD nurse that instead of coming off totally(as GI said) you should slowly reduce the amount to the point where you are taking the minimum dose for the maximum benefit.

Like many, the GI believed that the Pentasa was 'useless' for want of a better work once you had moved onto the next Drug up the drug ladder. DS' experience and that of those in our local support group is that ALL those further up the drug ladder also need to take pentasa/asacol too. So I absolutely do not believe that Pentasa in ineffective. For some it is enough and for others it needs to be used in conjunction with something else.

Cronico-Diet and/or drugs may help with the symptoms. Neither will actually make you free of the disease, it will still be there lurking. Sorry but you are talking bs by insinuating that diet may help with the symptoms but that only drugs will help with the disease itself. Crohns is one and the same, the disease is the symptoms! The symptoms are what makes life unbearable for some and I believe each individual (knowing their body best) has a basic right to try whatever means necessary to alleviate these symptoms. As I have said before, if you have tried diet/alternatives then move along, just because it doesn't work for one does not mean that it will not work for another, it is the same with drugs, just because one drug doesn't work for someone, nobody then turns around and says it is bs so please let's have some balance.

Jen77-I agree with you to a point, it is about quaity of life and I guess depending on what age you are/what stage you are at with the disease/symptoms will largely have an affect on what approach you take. DS is relatively young(now 19) there is no way at this moment in time that he would change his diet, simply put he likes what he likes and taking drugs allows him to continue to do this. Do I totally agree, no but I absolutely respect and actually undertstand where he is coming from.

My son has had some really high fevers 42/43 on drugs, do I claim that the drugs are ineffective, no it was a 'blip' these occur whether on drugs or diet.

NCoT- I know you get so frustrated both with the disease and people mentioning alternatives but one point I would like to mention(in the nicest possible way) is that you only gave the elemental diet two weeks before giving up and it is well known that 2 weeks is not enough on this plan. I know that they may be unpalatable for some but all thngs considered they are a far easier option than deciding to make a whole lifestyle change with 'normal' foods and it you found elemental difficult.......!!

I think thw whole problem with alterntives is that some people simply find it too hard to make a full adjustment and do it half heartedly believing that if they do a bit of it then that should be good enough or they simply expect if to work almost immediately, whether using drugs or alternatives you need to follow whatever regime 100 %, whether it be taking all your medications at the right time without missing any or absolutely abstaing from all 'wrong' foods regardless of if they only have a trace of the wrong thing.

Currently(unfortunatley) there is no cure, all anyone can do is what they feel best for themselves. As there is no cure, absolutely no-one can say that 'whatever' is the absolute way to go. Whatever works to alleviate sypmtoms for an individual must be good and surely we have to be greatful that this is good for that person concerned. My son took the drug route which in my opinion is the somewhat 'lazy'( :D) route but I am greatful he is in remission but that doesn't mean that alternatives would not have worked.

Pheeew, said to much will get off my box now and go and do something productive.

NCOT- What has you so bitter? Is it the disease or is it you do not have the determination to dedicate yourself to diet, just as Vixen said, you only gave the Fortisips 2 weeks. Seriously, how can you say meds are safer than diet? Please. I am stunned by your comments that insinuate that specialized crohns diets such as SCD and Paleo cause weakness and deficiencies.
As for your response that you have never met a real life person that manages their disease with diet and supplements. I have met many. Do attend Crohns support groups in your community? I do and I know many that manage with diet alone and many with diet and supplements. I never said diet is a cure all but then again, I don't know if it is or not. I am simply saying that diet, supplements and meds can all play a role in successfully managing this disease. Why does that bother you so much?

Post Edited (pmedic) : 5/28/2012 10:03:21 AM (GMT-6)

NiceCupOfTea said...
@pmedic - You and pb4 are such mud-slinging, ****-stirring hypocrites, I wouldn't know where to start. So I suggest you both put me on ignore and I'll do the same back to you two, and that way we are all spared from having to reach other's bollocks.

I don't spread lies; you and pb4 just have zero reading and comprehension skills.

So will  this name calling be allowed by administration? I am sick and tired of being attacked and now called names! Real therapeudic for Crohn's patients!

You and pb4 started the name-calling, you pair of aching hypocrites. You two must just live for this type of forum drama. I know I'm giving you two exactly what you want - feeding the trolls. But there you go, I can be an idiot as well.

NCoT- I know you get so frustrated both with the disease and people mentioning alternatives but one point I would like to mention(in the nicest possible way) is that you only gave the elemental diet two weeks before giving up and it is well known that 2 weeks is not enough on this plan. I know that they may be unpalatable for some but all thngs considered they are a far easier option than deciding to make a whole lifestyle change with 'normal' foods and it you found elemental difficult.......!!

@vixen - Look, I like you and don't want to fall out with you. But you don't have Crohn's and you have no idea what the elemental diet is like. Neither did I until I actually began it. It is horrific. I stuck to a liquid diet for a month, so it's not that I don't have the willpower to resist solid food. But the elemental diet was more ghastly than I could have imagined. I had to get down nine cartons of drinks a day with the flavour of vomit. My entire day was taken up in forcing the drinks down or gloomily planning when to the next one. I was tied to those wretched drinks. It also changed my personality in a way I never foresaw. It was like being on Pred, but worse - my brother, whom I hadn't seen in three years, must have thought I was a mental case. I flared up; my stomach symptoms were worse, I got fevers every night. Two weeks on that bloody diet was two weeks too long. I was also in danger of starving, as, by the second week, I couldn't face having more than 4-5 cartons a day and probably would have ended up having only 2 or 3.

So, no, the elemental diet is not easier than the SCD, or whatever.