Diagnosed With Crohns But Not Sure

[jlc40]

Hi
Ive been reading posts and am relived to see such a comprehensive site. I am hoping that some of you may have experience with my issues and can provide advice.

I am a 25 year old female, diagnosed with Crohn's 2 years ago after a colonoscopy. At the time, I had lost about 15 pounds suddenly, was experiencing awful bloating, cramping, stomach pain, and diarrhea. Nausea would come and go, but the somach pain was especially severe. After the colonscopy, my doctor said he ws 85% certian it was Crohn's and prescribed pentasa.

Well fast forward two years later, I left my previous job and do not currently have insurance so cannot go back to the doctor. But I am wondering if I do have Crohn's or if it was a misdiagnosis.

Most days I have a bm 3-4 times a day, at which point they are always soupy of diarrhea, with bright red blood (but not a whole lot). I still get cramping frequently, and occassionally wake in the morning with stomach pain. However, it seems like lately at least 5 out of 7 days of the week I have severe bloating. My stomach is very distended, and hard to touch. It seems as though pretty much everything I eat ends up causing me to become more bloated, and I feel my energy sapped, and lower back aching constantly.

Is this common with Crohn's? Or is it likely I ws misdiagnosed? I have not seem much for symptoms in the way of a constantly bloated stomach.

 

[JohnS]

yes, it's crohns

yes, it sounds like it is crohns; if you don't have insurance and you are getting tired of pain and bathroom visits like I was (bm=torture) then I suggest to try
GLUTEN-FREE DIET; it is a hard diet to follow but it works for me 100% and I had the same sypmtoms most of my life; took a lot of madication but now I have a second life and want everyone to have the same
(read my other post named "If I could defeat crohn you can too"
JohnS

 

[jlc40]

Thanks for your advice, John. I had been wondering about gluten, and at this point am willing to give anything a shot.

Thanks again

 

[Kev]

Hi jlc40.. Welcome to the forum. I know that I wish I could 'wish' my disease away. I think everyone on this site would share that feeling. I feel that I have to caution you that no one on here is an 'expert', qualified to give medical opinions or advice. We're just fellow sufferers who share our own experiences. You had a colonoscopy and a GI was of the opinion (85% sure) that you had Crohns. And the symptoms that you describe sound pretty typical of Crohn's. It's possible that it may be something else, but your GI gave it 15%.. so I don't think you were mis-diagnosed. But I AM NOT A DOCTOR. As for what you should do, that is up to you. Me? I take my meds, watch my diet, take supplements, enzymes, probiotics, etc.. plus rest and exercise. I don't think any one of those things will 'fix' crohns all by itself. If just one thing could, there wouldn't be so many people sick with it.
I lost my insurance coverage too, when I lost my job because of my health. It really sucks. I hope you can find a way to see a doctor without going broke doing it. You have to fight this illness first hand, but you NEED medical expertise to do it.

 

[JohnS]

Kev, you know my story and yes I am free of crohns symptoms due to gluten-free diet so please don't say that 'NO-ONE' can be cured or it's imposibble;
the GLUTEN-FREE DIET is very difficult to follow and most GI don't even tell their patients about that due to many reasons which I still don't get but Coeliac Disease (gluten allergy) is what causes Crohn's Disease in many cases such as mine
P. S. the reason gluten is so difficult to eliminate because it's in bread (including pizza), all beer (except gluten-free beer) and many additives such as natural flavoring which is often made out of wheat gluten
JohnS

 

[JohnS]

one more thing

one more thing with GLUTEN-FREE DIET
since gluten allergy damages the walls of intestines many people can't digest lactose which is in milk and in many milk products like sour cream, ice cream and some cheeses; so it's best to eliminate milk products for at least the first 20-30 days of the gluten-free diet and when you'll feel better then add milk products (if desired) and monitor the body's reaction to it,
wish you luck
JohnS

 

[Sojourn]

Welcome jlc40. It certainly does sound like you have more than just a mild case of Crohn's. And (disclaimer) I am not a doctor or medical professional. The bright red blood is probably from bleeding hemorrhoids and shouldn't concern you as much as dark red blood. With all the other symptoms you mention, including distension of the stomach, I am concerned. Do have a fever? If you have a fever with all these symptoms, or develop a fever, I would recommend going to an ER. I'm sure you know that they will check you out without insurance. Yes, it will be costly, but not as costly if it gets worse without some intervention.

I found out I had Crohn's about 5 years ago when I finally went to the ER after almost passing out from continuing similar symptoms. I did not have insurance but they kept me alive. In the following months I went out and got a job with insurance and waited for it to take effect so I could get treatment. But if I hadn't done that, I would have gone back to the ER if I needed to. It took a few years to pay off that debt, but they kept me alive. I probably would have died if I didn't go in. It took four days for them just to get my fever below 103.

I'm not trying to scare you. You don't sound that severe. But I'm just suggesting that you be careful and don't suffer just because you don't have insurance. Especially if you get a consistent fever, usually accompanied with night sweats, you need to get in and see someone. Others here may have advice on how to utilize various social agencies to get some treatment or support.

About the "Gluten-Free" diet, I did it for two months at one point a few years ago and didn't experience any noticeable difference in my symptoms. But I'm not saying not to try it. Sure, you can try that and many of the other natural diets and supplements and you should. But from reading, and talking to, many with Crohn's there's not one solution for all. And while I'm not a big fan of medicine, there is some that will keep you alive when nothing else will work.

 

[Cara Fusinato]

Just remember, a gluten free diet or traditional medications or alternative medications or whatever CAN pop us into REMISSION and keep us STABLE, but it is not a cure. Unless you had it and have had ALL the tests done with not one single indication of any illness, you are not CURED. Be careful what you term it. Now, by all means, pursue getting yourself into remission and keeping yourself there, but be careful to not feel like you are CURED. It may just be semantics, but it's important that we remember always what our bodies may be doing hidden or obvious.

 

[jlc40]

Thanks for all the helpful responses. It's also encouraging to know that having this condition and then switching jobs doesn't mean you are automatically denied coverage because of the condition. I will have insurance next month, but may need to see a doc before then.

Thanks again for the advice--it helps knowing other's can understand the situation and have 'been there done that' and can offer solutions.

 

[DanSJVDavis]

Just remember, a gluten free diet or traditional medications or alternative medications or whatever CAN pop us into REMISSION and keep us STABLE, but it is not a cure.

Absolutely. I try not to get angsty on here, but I've noticed a lot of posts lately about alternative diets and how they're all "miracle cures". Well all I gotta say is that they truly are miraculous if they can actually change the human genetic structure just by eating it. There's no gluten free, no special juice, no herbal tonic that can take away that little section in our genetic codes that keeps constantly telling our bodies to do a certain task.

Think of our bods as a computer with various programs running. Now, think of Crohn's (which has been shown to have a genetic marker causing the problem, scientists have determined this already, check CCFA, it's all over the place about the genetic research) as a glitch in the program, like a programmer made a mistake that causes the computer to do something undesirable and potentially damaging. Now, we can temporarily block the program by foiling it in various ways (depriving it of the things it needs to damage the computer, gluten free, special juice, herbal tonic, shakes, commercial medicines, etc., which all have the possibility of aleviating the symptoms by giving our guts a rest and allowing it to heal); however, not all things work 100% for every computer (because no one human being is exactly like another). Aleviate it enough and it causes the program to bog down and/or crash; for how long, nobody knows.

Eventually, the program will continue what it does (because no matter what you did to halt the process, it's still there in the background), which could be a slow process or could be immediate, depending on your previous condition and how you treat yourself once you do feel better. One thing to remember is that our bodies took time to get like this. The program has been doing what it does for potentially years and we just don't notice it until it gets to a point where it's painful. The inflamation happens over time and since we don't have a lot of nerve endings in our digestive system, we just don't notice the damage until it gets real bad, which could take months or could take years once our bowels have been given time to heal.

So, as Cara mentioned, you can aleviate your symptoms through various methods, you can even potentially put it into remission, but that does not mean that the disease is gone and will never come back, nor does any one method work 100% for everyone. Go into every possible treatment with your eyes wide open. What works for one might not work as well for another, and some might even potentially cause harm (and I'm talking everything from alternative therapy to commercial meds).

And I'm no doctor, no scientist, just a guy that's been on this rollercoaster ride for around 20 years now and I read a lot.

Far as jlc40's symptoms, sounds much like I felt when I was diagnosed with Crohn's except I also had trouble keeping foods down and I lost weight fast. Do what you can to try to aleviate the symptoms. Go with soft foods as much as possible and sometimes low residue low fiber helps. The most important thing right now is to keep your symptoms down to a minimum until you can get your insurance and can see a doctor. I've heard that insurance through a workplace is far less likely to have a pre-existing clause in it or a waiting period for pre-existing than private insurances are. And I'm not saying above that you shouldn't try gluten free if you want, just be aware that it might not work or it might only partially work and keep in mind that it's not a "cure". Also keep in mind that some of these alternative treatments can be a little damaging to the bank account as well (have you actually looked at the shelf tag of gluten free products?). Bout everything out there right now pretty much treats the symptoms, but there's nothing yet that can actually fix the underlying cause. But they're working on it.

Sorry folks for the rant. Stressed today and one of my nerves got touched off.

 

[Kev]

Hey JohnS.. Yes, I read your story.. Now, did you read my post? I never made the statement that "Crohns' can't be cured" I said that my personal opinion is that no one thing could 'fix' it. All of the doctors, consultants, therapists and specialists that I have seen, and organizations such as CCFA, "THEY" say Crohn's can't be cured. You have a problem with that professional opinion, take it up with them. As for me, since I've had periods of 10 years, 5 years, 3 years ALL symptom free without any meds... leaves me in the position that being 'symptom' free is no guarrantee of being cured.

 

[D Bergy]

Sounds like Crohn's to me, but I am not a doctor either. I had the bloating pretty bad before my surgery.

Celiacs and Crohn's are two related and yet different diseases. I was tested for Gluton intolerance and had non. My daughter has Celiacs but not Crohn's. There is a blood test for it so anyone can be tested and I believe it is fairly reliable. The stuff I have read on it indicates that Gluton intolerance is more common than realized. Random testing shows many more people are Gluton intolerant than have been diagnosed with Celiac.

You also can have both Celiac and Crohn's. It would be possible to have a wheat or Gluton allergy and yet not have Celiac. A Gluton free diet will almost certainly help anyone with Celiac but may only help a few with Crohn's.

A cure would involve correcting the improper immune response. Everything else is a secondary symptom originating from the original problem. You may be sensitive to Gluton and you can eliminate it and get a very good result in that your symptoms will be less or non existent. But only if you are sensitive to it in the first place. This is not a cure because the underlying problem is still there you just were fortunate to have found a single trigger food for the reaction. If it was cured you would be able to eat gluton like people who do not have the disease.

Other people may have multiple trigger foods or bacteria, parasites or who knows what. It is unknown what the trigger may be in many cases. My worst one is onions but I suspect milk and I am sure others are involved as well. But wheat Gluton is not one of them as I have no reaction to it and my test and biopsy also confirmed this.

I agree that anything that can help reduce symptoms is helpful. But this varies with the individual and is not a cure. Suppressing symptoms or eliminating trigger foods or whatever is very useful, but any given method will not work for everyone. I have not seen anything here yet, whether a medication, diet, supplement, lifestyle that works for everyone. That is why it is such a hard disease to get control of.

What we can do is share what has worked for us and others can try it out if they so choose. If something works for one person, it likely will help others also. But it may only be a very small percentage of the people with the disease. It is a confusing disease but I think Jeff's approach of a food diary is about the most sensible way to find food sensitivities. That way you can find your individual problem with food, if any.

Best Regards

Dan Bergan

 

[JohnS]

Hello again

I think that I was misunderstood; when I wrote that gluten-free diet is a 'cure' I meant it's a 'cure' for me and my condition meaning that I no longer have the symptoms of crohns; I know that I still have crohns but It's not the point; I like most here spent countless hours reading and researching crohn and diets; one of the reasons that I found why many GI's don't suggest gluten-free diet is that they are not obligated to do that because they treat the sympthoms of the disease and not the cause (which is based on the fact that there is not enough research done on gluten causing crohn therefore it's not sufficient for GI's to suggest); trust me friends that the only reason that I don't sue my GI for not suggesting gluten is a cause of my crohn is that I don't have time or money to do that but I believe that I would easily win my case due to how well I'm doing;
the person that suggested GLUTEN-FREE DIET to me was my pchysical terapist (what a good person) that I was seeing due to my lower back problems which are also gone with the crohns; IN MY CASE crohns was caused by gluten that penetrated my intestinal walls; now human body allowes that due to damage in some of the DNA's and RNA's; and as far as I know most RNA's can be fixed and most DNA's can't; but there hope due to some new research that in future there will be medication to at least correct RNA's which could contribute to fixing the ability of intestines to block gluten from penetrating them; so friends don't trust every doctor you meet; do your own research and yes as far as I am concerned GLUTEN-FREE DIET IS MY CURE to crohns for now
thank you all and I hope I'm not misunderstood this time
JohnS

 

[katiesue1506]

So then if its your personal "cure" then anyone can beat it, right? I'm not really trying to start anything here... I just have a thing where when I see people promoting "miracle diets" it just touches me the wrong way. I'm not sure why... maybe its because I know I would rather be on medicine and eat what I want then not be on medicine and have to HEAVILY restrict my diet. Plus, as many have already said... gluten intolerance isn't a symptom of Crohn's Disease... gluten can hurt your stomach while flaring, however... during a flare, what doesn't hurt to eat? I think its great that it has worked for you... and I think it great that you informed everyone that it could possibly work for them, however I believe the way you expressed it as a "Look at this new hidden gem diet I've found, it will cure your Crohn's and all you have to do is eat GLUTEN-FREE!!!" was not necessarily the way to express it.

I guess I'll do the same as DanSJVDavis and apologize.... as one of my nerves was touched too. I mean no harm...

 

[JohnS]

wow

wow, I never though that I will 'strike a nerve' just by saying that I have been 'cured';
I appalagise to everyone;
the reason that I can't express myself fully is because english is my second language but worry no more people this is my last post here;
do what you want but know that I'm cured and you are not

P.S. Now I know why the world doesn't like americans anymore but still I wish you all luck

 

[Kev]

I think JohnS final words speak volumes, especially about him and his claims. Nothing I read from any of my 'American' cousins warranted this flagrant display of poor etiquette. Unfortunately, on a site which is open to all, there is no viable way of screening out those who would behave in such a manner, or offer information that is highly questionable, to say the least. I wonder if there is any truth to what he said?

P.S. Now I know why the world doesn't like americans anymore but still I wish you all luck

 

[KCMike]

I'm not exactly sure how to respond to JohnS. My first question is what does being an "American" have to do with anything in this forum? The last time I checked there are people from all over the world posting here. We all know what treatment works for you may not work for me and vice-versa. As far as I'm concerned there are no "miracle cures" and we have every right to question those who claim that there is.

 

[katiesue1506]

Oh geez... it always has to be a difference in culture thing, doesn't it? Why can't I express my opinions as A PERSON... why is it considered a comment from AN AMERICAN... why can't we all be people and express our opinions as people, and react from those opinions AS PEOPLE.

I will say that as AN AMERICAN, I really do get upset with how some people just lump us all together as bad and ignorant and useless. While I do realize that America makes the majority of the pollutants in the world, is the number one contributor to the depletion of the ozone, and is a country based on efficiency instead of quality, there are some good people here. And I do realize we have our actors and actresses running about as if they own the world and can get away with what they want... well the true America isn't like that. The true America struggles too... the true American has its slums. The true American can't just go out and party all night, do drugs, and then stop by the rehab center for a minute to claim sobriety. While I realize our problems aren't nearly close to that of other nations such as Iraq, Africa, and Russia... there are some people that care to be informed. There are some people that are truly good, decent, work hard for the dollar human beings. I refuse to be lumped into "the Americans that people don't like"

Boy that lit my fire. I'll stop now. Because I know I've offended some. GRR


Oh... and jlc40... I'm terribly sorry for this thread hijacking... your symptoms do sound a lot like crohn's disease. I would say to do what you can to help yourself. Good luck with you trek. I hope this hasn't turned you off to the site. I'm usually a pleasant person... I promise. I don't mean any harm.

 

[D Bergy]

I think the fact that English is John's second language and he may have been using the word cure in place of treatment and remission mistakenly made his post sound differently than he intended. The fact that he had an English name, and his command of the English language is quite good, fooled me.

If I would have known he was using a second language it would have been useful for discussion purposes. Can't blame him for a second language miscommunication. I spelled my last name wrong in my last post, and it is my only language.

No need to leave John, it was all likely a misunderstanding. We welcome any help or experiences. I am glad you found an effective treatment. That is about all most of us hope for.

I apologize, if I offended you in any way. That was not my intent.

Best Regards

Dan Bergman

 

[Kev]

You know, as a young fellow (yup, believe it or not, I was young once), living in a very small community, on a very small island, that was a mecca for tourists based on it's sheer beauty and the hospitality of the locals, I met more than my share of same.
They were from all over, but the ones who really stood out were the Americans. They were almost larger than life... and, unfortunately, like every other group, there were the bad apples amongst them... you know, the stereotypical 'Ugly American'. It's odd, but I guess natural.. that 'those' were the ones who stood out, who came to almost represent Americans. I mean, regardless of nationality, people tend to remember (and not fondly) types like that... and yes, we all seem to lump them together. I recall, with a delight that I can't put into words, my trips to the US, meeting 'real' Americans (and a finer group of people you are not likely to meet).. That put it into perspective for me.. that was my wakeup call. I think one of the side benefits of this site, is that, regardless of where we call home, we see each other as people first.. and not labels. See, there is good in being sick.

 

[Mazen]

I guess if Crohn's or any disease has a positive side, it is that it affects all people from all races and all creeds the same. So I guess suffering really unites humanity and shows us that we are all equal.........

I sometimes wish all world leaders had chronic illnesses so they will know what is the most important thing in life which is health, happiness and the simple things that God has given us; the wisdom of disease as I call it. Maybe then we will have no wars, famine, or misery in this world.......

 

[Kev]

Ain't it bad enuff that they are heartless AND brain dead?

 

[KCMike]

Also greedy and power hungry.

 

[tonya_n_ky]

Welcome to the forum, good luck to ya. It does sound like similar syptoms that I had at the beginning. Diarrhea, Bleeding, Stomach pain, fevers, loss of appetite, fatigue, to name some..Take care.