New Member - Crohn's since 2011

Hi Everyone, I'm new to the forum and relatively new to Crohn's disease, I've joined to hopefully get some support, give support and just talk to people who know what I am going through.

I was diagnosed in 2011 when I got an anal fistula (the most painful thing ever). I have never had any other symptoms that said I might have a bowel disease, I have never had D, blood in my stools etc. So the diagnoses came as a huge surprise. Then I started to notice minor symptoms like the abdominal pain I thought was gas or period pain was not, so I started a food diary. It hasn't really helped that much but I am sticking with it in the hope it will shed some light. One week I can eat nuts or takeout food then the next it gives me cramps. It gets frustrating.
Last month my GI wanted to know how my insides were going so I went for a colonoscopy (my third) and came back all clear. The surgeons exact words "There is no sign of Crohn's Disease". I am so happy.
I currently take Pentesa (not sure if its the best one), Metamucil (my GI told me to take 30mg of fibre per day), Fish oil, Inner Health Plus.
I still get some minor cramps and anus pain, from the surgery, but I think this will always happen.
Do other people in remission still get some sort of symptoms, even if they are just minor?
Also, I have psoriasis on my scalp, and I have read that this is a symptom, my GI says it is not a symptom of Crohn's. Has anyone got anything similar?

Hi, it is a vary varying and complex condition with many levels of suffering and pain and severity of symptoms.

One thing I can say is that if you dont show evidence of signs of Crohn's Disease from a colonoscopy then that is doing better than many people. I have gone from having terrible pain ulcers and inflammation, to making some adjustments foodwise after being diagnosed with Crohn's, to getting to the point where a recent colonoscopy show no ulcers and no inflammation - does this mean i dont have Crohn's Disease... I really wouldn't like to say.

All I can say is that when i was at my worst a GI specialist gave me a diagnosis of Crohn's and as it is said to be incurable and i have yet to be cured, my sensible head tells me that i still have but they just dont have a way to be sure now that ulcers and inflammation are no longer exisiting to be visual checks to use for diagnosis anymore.

I am still 'not right' and still cant eat properly - certain things give me pain etc.

As i say, it really is quite a complex condition.

I dont know much about fistulas to really comment but given your description of how you are now it does seem that you are in quite a good, strong position to work from with regards to maintaining healthy decisions to promote good gut function.

Welcome to the forum.

Hi wellen1981, I have definitely decided to take better overall care of myself, since my diagnoses I have quit smoking, I only drink alcohol on special occasions and I eat healthier. I think this is the most proactive things I can do to stay the way I am and not get worse. Plus I am losing the weight I put on when I couldn't move much with the fistula.

Welcome to the forum.

There is a test called faecal calprotection it may be a way of monitoring your disease level. Note it is not currently covered by Medicare, it as about $40. Costs to vary between labs.

I have gone from having terrible pain ulcers and inflammation, to making some adjustments foodwise after being diagnosed with Crohn's, to getting to the point where a recent colonoscopy show no ulcers and no inflammation - does this mean i dont have Crohn's Disease... I really wouldn't like to say.

All I can say is that when i was at my worst a GI specialist gave me a diagnosis of Crohn's and as it is said to be incurable and i have yet to be cured, my sensible head tells me that i still have but they just dont have a way to be sure now that ulcers and inflammation are no longer exisiting to be visual checks to use for diagnosis anymore.

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Crohn's can't be cured but can go into remission. There are different types, or levels, of remission. You can read about them here: http://www.crohnsforum.com/wiki/remission One category is the healing of the digestive tract, meaning there's no inflammation or other signs of active disease to be seen with scopes.

UnXmas said:

Crohn's can't be cured but can go into remission. There are different types, or levels, of remission. You can read about them here: http://www.crohnsforum.com/wiki/remission One category is the healing of the digestive tract, meaning there's no inflammation or other signs of active disease to be seen with scopes.

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Catch-all, umbrella terms will always struggle to be 'cured' though won't they.

That's the problem with these terms, it denies the possibilty to actually define what they are.

Eg ask yourself what is Crohn's Disease...

It's like trying to describe what cancer is without having the ability to narrow it down further to different types of cancer and the knowledge to describe them at a specific, individual level.

The fixation on symptoms of CD have lead to a very stunted knowledge and understanding into the actual root causes of the 'condition'.

It's as if the focus of everyone somehow got distracted by the symptoms and in turn medication for symptoms, that no one stopped to step back and look at the actual underlying reason everyone is ill.

I'm not quite sure what point you're trying to make, Wellen. What's a catch-all term? Who's fixated on symptoms, and if they are, why shouldn't they be? Symptoms are very important. Someone could have what doctors diagnose as Irritable Bowel Syndrome - no objective test results showing anything wrong at all, yet their symptoms (similar to many Crohn's symptoms) could ruin their life.

I'm glad there's been a lot of focus on reducing Crohn's symptoms, because Crohn's symptoms can be absolutely miserable. I also think that there have been efforts to do more than treat the symptoms of Crohn's; for example, a medication like prednisone does much more than mask symptoms compared to painkillers. In the absence of a cure, symptom management is the next best thing.

If you're just making the point that there is much more to learn about Crohn's and that currently no one knows its exact cause(s) then I agree with you and I don't think anyone could really argue with you on that point. But if you're saying that because of this uncertainty it could be that there are people who have had Crohn's and then somehow been cured of it, and you imply your diet may have been the cure, that is a possibilty. However, the concensus in the medical world is that Crohn's is currently incurable, so there can't be much - if any - evidence supporting the idea that some people have been inadvertently cured of Crohn's. This paper referenced in the Wiki article I linked to in my earlier post shows that Crohn's patients with mucosal healing are not considered to be cured: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151410/pdf/GH-07-374.pdf )

My response to your post was simply to try to clarify to Deanne and anyone else reading who is new to Crohn's that the consensus in the medical world is that there is currently no cure for Crohn's and that it's not a disease people just recover from; it's a life-long condition, but it is possible for it to go into remission, which can include having no symptoms and can include mucosal healing (as your colonoscopy showed). You seemed to be saying you may have got better from Crohn's due to changing your diet, which would be interesting to speculate about, but could cause confusion as it goes against the current understanding of Crohn's in conventional medicine. But as I said, I'm not quite clear on what point you're making, so I'm sorry if I've misunderstood you. Also, what is the "underlying reason that everyone is ill" that you mentioned?

Deanne - reading through the paper I came across the answer to your question about symptoms while in remission:

Many patients with IBD exhibit persistent symptoms, such as abdominal pain, bloating and diarrhea, in the absence of mucosal or serologic inflammation.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151410/pdf/GH-07-374.pdf P.377

If you're still around, Deanne, I hope you're feeling better, even if the symptoms you were getting are minor, it's still not fun to have to deal with them. Did you get anywhere with the food diary? Please post again if you have more questions or need support.

Thanks UnXmas, I am still currently doing my food diary. At the moment I am finding it difficult to get the answers I am hoping for. So I am trying something different. Rather than focus on only the foods I am now taking into consideration the times I eat certain things.
So for example I have been told to take Metamucil by my GI, and for the next week rather than take it in the morning I am taking it mid/late morning. So far no cramps today.
Have you heard of anyone having to do the same thing with certain foods/medication?

There are certain foods that make heartburn and reflux worse if I have them in the evening, which is very common for people with heartburn/reflux. I don't know of many others, not for digestive symptoms anyway.

What I have found is that the amounts of types of food I eat over consecutive days affects me far more than each specific food. For example, before I got an ileostomy, fibre gave me pronlems. But I could eat a small amount of a very high fibre food (e.g. bran, nuts, seeds) and it would have no effect. But if my diet in general had included a lot of fibre for a couple of days, I'd feel worse no matter which foods the fibre had come from. So I was able to work out how to minimise my symptons through diet by looking at my diet as a whole over the period of a few days or more, and its components such as fibre, fatty/stodgy food and the overall volume of food I'd eaten.

Sorry, yeah...

The annoying thing is just that.
The fact that the root causes have way less effort put on them from multiple angles compared to the amount of money pumped into 'managing' the condition(s).

I just wish that the stigma of it being an incurable condition was not fixated on so much when it is more a case of IBDs can be resolved we just don't currently understand it enough to be able to do so at this current point in time medically/scientifically.

As for resolving through diet - people would have to be very naive to think that diet alone is enough to reset the gut balance when a very persistent infection will remain present albeit in a dormant state for the majority of the time.

I strongly believe through evidence that it is a 2 part process whereby you do need to alter your diet accordingly when suffering these condtions (as to minimise the further damage caused by intake), but that alone is not enough and the actual infection(s) does need to be dealt with also and for that I only see one realistic way and that is through the correct medication.

I honestly don't believe that taking many maintenance meds to tackle symptoms and give pain relief is the best way to deal with things when diet alterations can give the same results, without the unwanted attributes of constant maintenance meds eg bad side effecs etc.

I'm only typing this to try and clarify my previous post for unxmas a bit better as I don't want to take someone elses thread off-topic.
Just trying to be more clear as I wasn't previously.

It really doesn't help us as sufferers as it is all pointing to the infection being multiple pathogens each needing different treatments to rid us of whichever and whatever single or multiple infections we are diseased with.
This just adds to the confusion about how to proceed and is a likely reason some people can handle certain foods and others can't.
The same with some meds working for some people and some meds not.

I just wish more people in the areas of expertise were focussing on finding solutions to the actual causes rather than symptom management.

I got severe food poisoning from poultry/eggs and then severe food poisoning from seafood (was prawn cocktail) within the space of about a month of each other 10+ years ago.
It was never dealt with correctly eg investigated or understood by my doctors (GP) and over time, this weakened state internally has allowed for other bad things ingested to take hold, set up home and grow undetected and undealt with until I have slowly got more ill gut wise.
Fast forward the 10+ yrs to when I got my CD diagnosis and with ulcers and inflammation, I am just another victim of a condition that should never have been allowed the perfect conditions and ignorance of harmful bacteria (in the food chain) to exist.
I say this last bit given all the evidence showing that MAP exists in the food chain even after it reaches shops eg in milk.
Australia knew how dangerous it was hence they culled many cattle stock to rid themselves of MAP infected cattle (to be able to guarantee they werent still adding to the problem, or at least minimising the addition).
An EU funded study into the industry proved that MAP was very much reaching us at human consumption level, yet it is still not responsibly handled so as not to expose us to the pathogen in food and milk.

They do know enough now to be responsible about it at industry level but for what I can only suspect to be vested interests and monetary reasons, they still choose to not inform the public of such risks and even more shockingly, still continue to allow the industry to use MAP infected cattle for our food chain.

I find this so alarming and hard to ignore.

Well said. I totally agree. The 'specialists' I talk to can't get past the medication side of things. This forum has taught me the most regarding how my diet can keep me in remission.

Deanne said:

Well said. I totally agree. The 'specialists' I talk to can't get past the medication side of things. This forum has taught me the most regarding how my diet can keep me in remission.

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That is the sad thing, all of my progress has been done on the back of peoples stories on this forum - if you find my early posts last year when i joined this forum, i detail my approach to learning using the diet sections of this forum.

I figured this forum is a great resource of real life data as all our fellow sufferers have already learnt the hard way and by trial and error and i didnt want to start from zero so i took the time to go through all the diet and safe food posts on here to spot trends and common safe foods that kept coming up for most as safe foods - this allowed me to build the foundation for my elimination diet and it worked.

I had suffered pain that kept me bed-ridden for over a year and within 5-7 days of altering my diet (basically started with just eating white rice) the pain went away.

I couldn't believe it.

Do you have any figures about where the funding for Crohn's research goes, wellen? Given that it's an international thing, and that treatments for Crohn's aren't specific to Crohn's but are shared with a great many other medical conditions, and given the fact that mainstream medical treatments for Crohn's include surgery and even dietary advice (there are NHS dieticians specialising in IBD), I can't even begin to imagine where to start looking for a breakdown of where financing for Crohn's research comes from and what it gets spent on.

And do you feel these problems you perceive affect Crohn's research in particular, or do you think they apply to medical research in general? Because Crohn's affects a lot of people and it affects people in rich nations, which surely means it's getting an awful lot more funding and research than many other medical conditions are ever going to have.

I just wish that the stigma of it being an incurable condition was not fixated on so much when it is more a case of IBDs can be resolved we just don't currently understand it enough to be able to do so at this current point in time medically/scientifically.

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Isn't that true of any currently incurable condition? Any disease has the potential to be cured.

That is the sad thing, all of my progress has been done on the back of peoples stories on this forum - if you find my early posts last year when i joined this forum, i detail my approach to learning using the diet sections of this forum.

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The best improvements I've experienced have come from medications and surgery. What conclusion would you draw from that?

UnXmas said:

Do you have any figures about where the funding for Crohn's research goes, wellen? Given that it's an international thing, and that treatments for Crohn's aren't specific to Crohn's but are shared with a great many other medical conditions, and given the fact that mainstream medical treatments for Crohn's include surgery and even dietary advice (there are NHS dieticians specialising in IBD), I can't even begin to imagine where to start looking for a breakdown of where financing for Crohn's research comes from and what it gets spent on.

And do you feel these problems you perceive apply to medical researcch in general? Because Crohn's affects a lot of people and it affects people in rich nations, which surely means it's getting an awful lot more funding and research than many other medical conditions are ever going to have.

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That's a lot of questions at me for things that are out there for all to see but I still don't follow where you are going with this response to what I posted.

It reads very defensively regarding the handling in general of conditions and I don't understand why you would ask me by questioning in a very generalised way.

I could start by actually attempting to answer each of your questions but it doesn't seem sensible as my responses would serve very little purpose as the situational outcome for sufferers remains the same even after responding to each of your questions. We would be going around in circles.

You've honestly confused me with that reply. Seems irrelevant to bring up a countries percieved wealth in regarding to correlating that with ability to understand conditions.
It's more about talent/ability and the inclination to persue the most challenging problems and when you get down to that level of reality, money funding and wealth in a country dont count for much.

My quick response to your post would be that I wouldn't like to step back and start talking generally about other conditions/research etc as muddying the water and taking the convo away from our specific conditions is actually the worst thing to do as losing focus on what is actually important to us all by stepping back and looking at everything is not a good method for being objective and dealing with a problem.

Personally I am less interested in what all aspects of science medicine are doing and more interested in the best knowledge we have gained regarding these specific condtions we all have and I am very keen to see going forward, that more direct effort is made to build on the best most credible findings regarding these conditions based on newer discoveries than 50 year old knowledge that over the last 10-20 years is starting to be proven to be on 'the wrong track' and outdated and surpassed by better findings/knowledge and understandings.

With regards to your quote of mine about me finding results from safe foods on this forum, all i can say is if you are specifically talking about your condition from IBD and you getting results from surgery the only accurate logical conclusion to draw from the difference between you and i was that i had not got to such a severe point as you to be forced to have surgery OR that you drew a line on how long you were prepared to put up with how much it was affecting you.
Either way to go down this area of convo is unfair on both of us as it shouldnt be about comparing us against others with the same conditions as the reality is that each person is at a different level and stage of destruction caused by these IBD conditions. And that ultimately dictates things like getting backed into a corner healthwise and needed things like surgery as then it goes past the infection being an issue and it's more along the lines of a physical 'plumbing' issue eg blockages etc.

I'm sorry Wellen, all I really wanted to know is where you're getting your information from. E.g.:

The fact that the root causes have way less effort put on them from multiple angles compared to the amount of money pumped into 'managing' the condition(s).

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When you make claims about Crohn's research and where it is focussed, where have you read these things, who have you spoken to? Who has stigmatised it as incurable?

And I asked whether what you've read/heard was about Crohn's or medical research in general because if it had been general, my guess would be that it wouldn't really apply to Crohn's. But without knowing what it is you've read, I can't know if my guess is correct or not.

The only type of evidence for your ideas and claims you gave was your own experience of getting information about diet from the forum. When I said that I'd got most help from medication and surgery, I was trying to make the point that one person's experience as a patient isn't much good at all when you're using it to support claims about how Crohn's research and treatment is organised. (Since one person's experience is very different from another's. Surgery and medications have done far more for me than diet and than any information I've got from this forum, which contradicts the only evidence you provided.)

Again, I'm sorry if I sounded defensive - I didn't mean to. I would like to know the sources of your information.