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Recently diagnosed, few questions

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Crohn's Disease
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Posted 5/10/2012 7:10 AM (GMT 0)
Diagnosed with Crohn's as of April 2012, had been dealing with abdominal pain for about a year and went through many tests to figure it out, but we never got there until I got hospitalized last month due to high fever and extreme pain. CT scan showed inflammation of the colon, and colonoscopy confirmed inflammation all on the right side, ileum and colon.

The GI doctor said all of this was consistent with crohn's and put me on my meds and sent me on my way. The biopsies came back however a week later showing it was ulcerative colitis, I followed up with my primary and he said thats what it says, hes not sure what to say, and wants me to follow up with the GI, which is 2 weeks away still. This seems odd, as from what I have read, it seems my condition does in fact seem more along the lines of Crohn's and less like UC, but not sure how the biopsie plays in this scenario.

So, I am concerned about diet and medication. Basically what I am asking if between the 2 is it possible my condition will stay calm, or is it more likely that I will eventually get worse? As it stands, I really only have ever had abdominal pain, no diarrhea, bleeding, etc. I feel lucky to have minor symptoms that seem t be under control now, but I worry that it may get worse. I know every person is different, and from what I can tell, there is no answer, but I guess I am just looking for personal takes on your experiences since I don't have anyone close to me with this condition.

Also, any opinion on the biopsy thing? Seems UC is a bit worse since the risks of colon cancer and everything, and my DR freaked me out a bit about it.

Lastly, what I found this site through was Google searching for cheaper Asacol which I soon spotted from Canada, but really would like a reliable source if there is one you can reccommend. I figured I'd hold off until I can research it thoroughly and talk to my GI and see if I am going to be on this for the long haul or if anything is going to change bfore I buy a bulk amount.

Thank you for this site, its comforting to have a place like this. My heart is breaking for some of the stories I read, I pray we all find a cure and you guys can feel better.

Adam.
Posted 5/10/2012 7:18 AM (GMT 0)
Also, another quick question. I was told to do low residue/low fiber diet. I have been fine with it, but everything I read says if I can tolerate it, I can eat it. I feel like theres not a clear explanation of what I should and shouldn't be eating. I read that its more individual, etc. What my concern is, say spicy foods, or high fiber, might give me some pain or crampng, but if I can tolerate it then its ok to eat? I am concerned that if its giving me pain and I do it anyway, is that going to make the nflammation or condition worse in the long run, or does it not matter at all?

I only ask because if 20 years from now they tell me I shouldn't have been eating 'xxx' then I would rather know up front and avoid it.
Posted 5/10/2012 10:53 AM (GMT 0)
Hi, Adam.Sorry to hear about your diagnosis.But, it isn't the end of the world.I've had Crohns for twenty years.I was diagnosed at 20 too.The thing to remember is each case is different.Your body may tolerate  foods others cannot.Anything that is hard to digest will usually cause cramping.Raw veggies,seeds(pickles,strawberries,sesame seeds,kiwi),nuts,beans, soda.I was told years ago that if you have abcesses in the intestines and a seed gets stuck in there it will only irritate it.Causing more pain.It will take a while to learn what you can tolerate. I have found that if i am not flaring,I can eat almost anything.Stress is also a major factor.You will have to learn to stay as calm as possible.Stress is my trigger.I have had more Flares over stress than anything.Oh, and there used to be a theory on the seasons.Some people only have stomach trouble during certain seasons.So, you may want to keep a journal of things like that.It also will help with Dr.'s visits because you will be asked alot of questions about bowel habits and such and you won't always remember (I mean who keeps track of that stuff)haha! Anyway.Hope this was helpful.Be Well :-)
Posted 5/10/2012 3:31 PM (GMT 0)
Adam, welcome to the forum.

There are a lot of questions in your post, and I hope I can help with some. I might suggest that you start separate threads for each specific topic, because many of them can generate a lot of conversation here.

For starters, though, what you are going through re: diagnostic confusion is frankly very common. I agree with you: inflammation on the right side seems unlikely to be UC. I am not sure what it means that the biopsy is specifically calling it UC, and that is absolutely worth a conversation with the GI.

In my case, my first GI only did a flexible sigmoidoscopy, saw inflammation in the rectum, diagnosed me with proctitis and called it a day. Even while I was treating the inflammation in the rectum I continued to feel awful and have diarrhea, etc. It took another GI to get me a full scope in which he discovered inflammation in the cecum as well. This can sometimes happen with UC (inflammation at either end of the colon) but isn't a typical presentation. A 3rd GI found ulcers in the TI. At this point I was already being treated as if I had Crohn's (well, we switched 5-ASAs from Asacol to Pentasa, and I felt much better than before), so it didn't really matter to me what name my IBD had. Which is what I want to say to you: for inflammation in the colon, the meds are the same. You are too young and it is too soon to worry about colon cancer. Right now the main issue for you is to feel better. As you get further along you will work out with your GI what the right frequency is for you to get scoped, and you'll get a better picture of your overall risks, and how your disease is behaving.

On the topic of diet, there is a very wide range of opinions. There is some good science out there that the Specific Carbohydrate Diet and similar approaches can effectively reduce inflammation in the bowel. The SCD is can be very restrictive and it may not be a reasonable plan for you; only you can decide.

There is some good evidence that people with IBD are more likely to have celiac disease or develop gluten intolerance. Additionally, lactose intolerance is quite common among all adults, and maybe more common for IBDers - you can avoid lactose pretty easily by choosing lactose-free milk and having lactase tablets handy when you want to eat a cheesy meal like pizza.

There is also a dietary approach that is effective in inducing remission: total parenteral nutrition. This is where you eat nothing, but get all of your calories through a liquid meal replacement. This approach is commonly used in pediatric patients where steroids are not desireable because of their impact on growth and development.

If you are feeling very poorly, you can ask your DR for steroids to quickly induce remission. The 5-ASAs (Asacol, etc.) are not really very good at that. What we usually do is a few weeks with prednisone + 5-ASA, then taper the prednisone and use the 5-ASA to maintain remission. In my case I went for about 5 years trying to get to remission with 5-ASAs - I finally had such a bad flare that included all-over joint pain that I went to see a rheumatologist and he put me on 60 mg of pred. It took me 3 months to get off the pred but by then I felt much better, LOL.

At the moment, if you have inflammation in or near the terminal ileum it is smart to adhere to a low residue diet. It will also help you manage symptoms. Other than this, the best advice I can give re:diet is to eat what you want and if it bothers you stop eating it. A food journal can be helpful in untangling all of this.
Posted 5/10/2012 3:53 PM (GMT 0)
Thanks for the replies. To correct you, I am 28, not 20, probably doesn't make much difference anyway, haha.

Also, I am currently on the tapered pred, just got off the first extra pill, so far so good. I actually feel way better than before I went to the hospital, so I am optimistic. Time will tell if it stays that way.

I only ask about the diet because I want to make sure I don't put myself into a flare up because of food. I am weak in this area. I was good for about 4 days from the hospital then got bored of all the soft foods, and went for more and more snacks and other things I knew I shouldn't eat. Some of which caused nothing, some, I think because of sheer volume, would give me mild right side pain. Nothing I had to really do anything about, but noticeable enough to scare me a bit.
Posted 5/10/2012 4:05 PM (GMT 0)
No, you won't go into a flare from a food you eat. You might feel awful, though, if you eat something that disagrees with you. But it won't increase inflammation or cause bleeding. There are those who will disagree with me, I'm sure.

I adopted a gluten free diet almost a year ago, primarily because despite a significant amount of medication I still struggled with soft stools, crampy urgency, poor motility....anyway, after two weeks gluten-free, most of these issues were gone, plus I found my thinking was much more lucid and focused.  It was a weird experience.  But I don't think that going gluten-free has cured me of my IBD, or reduced any inflammation issues I might have.

I did something really stupid recently: I took two doses of Aleve. NSAIDs can absolutely put you into a flare, so stay away from them.

Posted 5/10/2012 6:28 PM (GMT 0)
I was told to do low residue/low fiber diet. I have been fine with it, but everything I read says if I can tolerate it, I can eat it. I feel like theres not a clear explanation of what I should and shouldn't be eating

Actually there are two types of fiber, soluble fiber such as apple pectin, guar, and psyllium; and insoluble fiber such whole grains and apple skins. Generally insoluble fiber irritates the digestive tract and is not recommended for IBD.

Soluble fiber may or may not be compatible. Some of us regularly take supplemental psyllium husks (Metamucil) or powdered psyllium seed to help relieve symptoms. Others do not find it helpful at all.

Most veterans of this disease eventually find out on their own that certain foods need to be avoided to maintain remission. The problem is that these verboten foods vary by each individual. Many popular foods to avoid are gluten foods like wheat and rye, and lactose from dairy. So that is a good place to start. You can start a comprehensive diet such as the SCD or Maker's, but I agree with the earlier posted advice to just maintain a food diary or journal to help untangle all this.

The most popular supplements many of us find effective are probiotics, vitamin D, and maybe omega-3 fats such as flax or fish oil. Get your blood levels of vitamin D, B12, and maybe folic acid checked since many with Crohn's are deficient.
Posted 5/10/2012 8:24 PM (GMT 0)
Hello, and welcome, one thing I always recommend to people just diagnosed with Crohn's is to keep a food journal.  Even just jotting down what you eat day to day would help.  Then if something causes you pain, you can check back and see what you ate.

Sometimes it can happen quite quickly, like if I eat spicey spaghettti, my stomach starts letting me know that I should have not eaten it.

One other thing you should avoid is alcohol and smoking isn't so good either.

Trial and error is the only way to find out what you can and cannot eat.

Hope you get things under control and feel better.

Posted 5/10/2012 10:03 PM (GMT 0)
Hey & welcome to the club :) I agree that it sounds more like Crohn's & your disease is very limited location wise at the moment & that's good. It can spread to other parts & only time will tell. Most of the people on this forum have a severe case so don't think that all the horrific things said on here will happen to you.

In my opinion, Crohn's is a LOT more serious than UC. Crohn' can cause stunted growth, nutritional deficincies, cancer(yes just like UC) & can cause you to get a lot of your intestines removed. UC has a cure & Crohn's does not. UC is cured by removing the colon completely, leaving you with an ostomy bag. No matter how much of the intestines you remove in Crohn's patients, the disease is not cured by any means & chances are it will flare up again right at the place where the intestines were resected. Crohn's can cause inflammation anywhere from mouth to anus & UC only causes inflammation of the colon.

A low residue diet usually helps reduce symptoms(depends where your disease is located). It may take a while to find the right meds but remission is totally possible. All the medicines carry some risks like cancer, osteoporosis, cataracts, brain disorders etc BUT if you weren't on meds your chances of living a quoality life are really low. If the disease isn't treated, you could risk losing your colon & other parts of the GI tract. Members on here think they can "cure themselves" through diet & other stuff like vitamins & herbal remedies but they aren't cured. They may put their disease in remission but EVERY person I know that went med-free with their Crohn's ended up having their colon removed at some point & go through a sevre flare.

I hope you get better & remember you aren't alone! Crohn's is so not a death sentence! People with Crohn's can deffinately live a normal life.
Posted 5/10/2012 10:49 PM (GMT 0)
Most of the people on this forum have a severe case ...
Members on here think they can "cure themselves" through diet & other stuff like vitamins & herbal remedies but they aren't cured. They may put their disease in remission but EVERY person I know that went med-free with their Crohn's ended up having their colon removed at some point & go through a sevre flare.

Many believe that diet can help maintain remission but I don't know anyone who believes that diet is a 'cure'. A cure would allow me to eat anything I want without consequence, much like before I was diagnosed. I am vigilant about diet because there is no known cure.

And as stated above most of the member of this forum are those who have a severe case and are not in remission. IMO those who can control their symptoms with diet modification tend to eventually leave so you don't hear about them.

I am allergic to the milder maintenance meds so I don't take them. Luckily I don't seem to need them. Apparently there are others such as PB4 who is a veteran here and many more on the UC forum who feel the same. But I would never, ever advise someone to not take their meds.
Posted 5/11/2012 2:44 AM (GMT 0)
You have not seen the many posts by others saying "I cured my disease" ? I see at least one new post everyday on here stating that but 80% of them are deletd by mods.
Posted 5/14/2012 9:53 PM (GMT 0)
My two cents...UC is definately the lesser of the two evils because surgery is curative. Also, I'm not promoting smoking but nicotine has a favorable effect on UC as it constricts blood vessels in theory decreasing bleeding due to UC. UC is actually treated with nicotine patches for this very benefit. Lastly,  nono   think that recommending fish oil or other omegas is a bit irresponsible with the information that the diagnosis is UC though you may disagree having so much experience with Crohns symptoms and how much you believe that this person has been misdiagnosed. Omegas are quite powerful natural blood thinners and thats the last thing that a UC patient should be using. P.S. Stinky is definately a symtom shared by both UC and Crohns. LOL  Good luck Adam. 
Posted 5/14/2012 10:41 PM (GMT 0)
crohny71 is right on about what not to eat. There are two reasons to restrict particular foods: (1) they may irritate your digestive tract and initiate or increase inflammation, which is exactly what you don't want; and/or (2) they may increase diarrhea by prompting what's called a "dumping reflex." Things in the first category include popcorn; foods with seeds and husks (like corn or whole grains or berries or cucumbers); insoluble fiber (like apple skins or the outer surfaces of many fruits and veggies). They also includes NSAIDs (Non-steroidal anti-inflammatory drugs, e.g., ibuprofen, aspirin, Advil, Bufferin, Anacin, etc.), which are absolutely proven to irritate the disease in the digestive tract. Things in the second category include caffeine and alcohol--or, say, a great big glass of prune juice. :)

How strictly you follow these guidelines is up to you. If you eat stuff from the second group, you'll know you've screwed up if you have to race to the bathroom for bouts of explosive D. If you eat stuff from the first group, you may or may not feel the effects after you eat them, but they may be doing silent, nasty work on your intestines or your colon.

In addition, each of us has his/her own special list of foods that seem to work or not work (that make you feel better or that really seem to mess up your digestive system). Some people with IBD are lactose intolerant; some feel better whenever they eat or drink dairy. Some people with IBD settle their stomach with pasta or other refined carbohydrates; other people find them intolerable. Some of us are gluten intolerant, and some of us aren't. Some people find that caffeine-free Coke helps them digest their meals; others find that they give them hideous gas pain. You'd think, for instance, that eggs would really feel good, but mysteriously, for me, they always make me feel queasy after I've eaten them--even though I have no idea why.

So keep a food journal for a while and see if there's any connection between the foods you've eaten and the discomfort that you feel during the week. Aside from the Big Two areas of restriction above, it's pretty individualized.

Good luck!
Posted 5/15/2012 3:44 AM (GMT 0)
Hey Adam,

This disease is so individualistic for each of us, what works for some doesn't work for all...maybe try a food journal for a while to make it easier to "try" and figure out what does/doesn't agree with you...just keep in mind, with CD even food that you can handle "now" may change down the road (same with foods you cannot handle now) so although it's a lot of work, you may find it helpful....keeping in mind that for some it doesn't matter what they eat (according to them at least) but of course everyone is different.

I actually do better on high fibre compared to low or no fibre....I've had CD for 21 yrs this month...and it still sucks but it is what it is.

Feel better soon!
Posted 5/15/2012 6:52 AM (GMT 0)
Thanks for all the helpful replies. I definitely have been avoiding as much as possible like fiber, nuts, seeds,, all the for sure No-No's you mentioned. I gave up caffeine, alcohol, and soda. I can't drink milk.

Also an update, the pred is giving me bad acne. My wife always hated me for having flawless skin, now Im kicked down a notch and she is happy. Glad someone is enjoying my disease, lol.

I am eager to speak with my GI about what med's I'll end up on. I honestly feel my condition is extremely mild compared to what I read on here. I have absolutely no D or C, and no extreme pain since being on meds. I fear it may one day get worse, but I am taking it as a 'less intense death sentence' meaning I could one day not be able to do all the things I enjoy and take for granted, so I am constantly in a 'higher' thinking mode of what I want of my life.

Thanks again for all the replies. I am praying for us all.
Adam.
Posted 5/15/2012 5:48 PM (GMT 0)
I'm glad for you that your disease seems to be on the milder side and I truly hope it stays that way for you. There is research that indicates there are gene clusters that contribute to the development of IBD and define the severity and behaviour of the disease over time...hopefully you're one of the lucky ones that will continue to have it mild.

If your doc wants you on meds, based on the fact that you aren't having issues with D or C, you have to be proactive and "work" with your doc and do what's best for you. I'm not against the meds (if anything the meds don't like me as I'm either allergic or non-responsive to them) but the way I look at it is I'm thankful I've found alternative routes to at least help some with my symptoms and I'll take whatever help I can get.

The bottom line for all IBDers is do what works for you and don't judge others for the way they choose to look after their IBD, we're all individual with this disease and there's really nothing worse than when someone warns people that if they're not on some type of RX they will be doomed cuz honestly that simply isn't true....My mom had UC and she couldn't tolerate any of the meds either, her UC was a rollercoaster but it definitely went in and out of remission even without meds. She ended up passing away in 2010 from a brain aneurysm not her UC which she suffered with (on and off) for 20ish yrs herself....IBD isn't typically a death sentence so to speak but it can certainly kill your "life" as you once knew it.
Posted 5/15/2012 6:52 PM (GMT 0)
I would say if you ended up in hospital with a high fever and extreme pain, your case is not even a mild one, let alone an "extremely mild" one. It seems like the Pred has kicked you into remission, which is really good, but don't let that fool you into thinking your disease is hardly on the radar anymore. It is, unfortunately.

Personally I think everyone who is diagnosed with an IBD should go on some sort of maintenance med, even for mild disease. Not because they are instantly doomed to an early death if they don't, but because medication increases their chances of getting into remission and/or prolonging remission. And because Crohn's is the sort of disease which can simmer along in the background, quietly doing its thing without you noticing - until one day you end up in hospital. I hasten to add it's not always like that; some people can also genuinely go into remission for years, occasionally decades, at a time. But it is also possible to have active disease without too many obvious symptoms and that's when the complications can arise.

If a med doesn't make any difference or you are intolerant to it, don't hesitate to tell your doctor and try something else.

Best of luck...
Posted 5/23/2012 2:19 AM (GMT 0)
Just an update.

I saw my GI today (follow up from the hospital) He asked about my meds, symptoms, etc. He upped my Asacol to the 800mg 3x a day, which is double what I was taking. I ended up finding a way better deal online than through local pharmacies (yes I made sure to research thoroughly) and a well timed coupon code got me a a crazy 25% discount. Anyway, my general cost went way down so that makes me happy. Not to mention I got a grip of samples between my GI and my primary.

He said my colitis was pretty severe so its good that I am not having symptoms of pain or anything. We talked about long term treatment, risks, etc all that good stuff. My biopsy showing UC he said didn't matter since they don't know the depth of the inflammation that was sent in, he told me the severity of it could not have been UC and since it wasn't at all near my rectum, and that it was possibly in the terminal ileum, etc. anyway, so it is Crohn's.

Thanks again all for the helpful posts.
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