Need help understanding my DX

I want to review my condition and past and see if it all adds up and need some help with some unanswered questions. I was dx'd in Feb 12 with Crohn's/Colitis a 10cm patch of (colitis) in the sigmoid located 20cm up to the 30 cm mark. I just had a visit with my GI and we talked for about 30 minutes but was left a little perplexed with one thing and perhaps some more that you all can help me understand. I asked my doc how they determine cd or uc and he said based on the biopsy from the colonoscopy. So I said to him "ok I have a small patch 10cm of colitis but have crohns disease"? and he said exactly. Now going back a bit to my original dx and when I flared a month before and initially went to the ER. The er visit was in dec 2011 at that time they did a cat scan and said you have divertucluosis thorought your entire colon. I said huh? I always ate healthy with pleenty of fiber and such. I didnt want to accept that at that time of course but anyways they prescribed me cipro/flagyl and sent me on my way to see a gastro. I scheduled an appointment with a gastro which is whom I see now and then at that time just scheduled me for a colonoscopy which happened on Feb 2012 which is wen I was oficially dx'd. Backing up again I wet home from the hospital with my antibiotics in hand and by the 5th day fealt much better and blood was gone and stools became more formed. I saw my doctor that week and he then checked me  quick and setup my colonoscopy date. The time frame was about 4 weeks from my initial visit to the er to when I had a colonoscopy and I remained fine. Although I was not eating alot for that first couple weeks I rmemenber being myself and saying to my wife I feel ok. This last visit I failed to ask my doc this one question after I we had a convo about the antibiotics and if he would ever use them again. He said that we may of not needed them because "crohns flares" "can make you feel like you have an infection" and infact maybe you would of been fine with just the canasa and asacol 800hd. At that time I should of asked him then why 18 months ago when this happened for the first time I only had the antibiotcs chich cleared me up fine.? I will be seeing my doc in September and will make sure I get an answer for this but thoguht in the mean time I could ask a you all here. I have to mention that I also asked him if my crohns affected me any other place he said no just the sigmoid and a small 10cm patch. He said your small intestine was fine. I then asked him "ok out of a 1-10 what is my level of crohns and he said a 1. I was sort of releived but at the same time I cant imagine having any worst because I was very sick this last flare from not taking my meds. I do have to question his logic on my meds because prior her had me on 2x2 o asacol 800 hd. I asked him if I would ever be able to go back to that 2x2 and he said no. I asked why and he said because that is the dose that is making you better now and that is the general rule we follow. I ask you all is this making sense? Can someone please help me understand his logic? I am just confused and cant see why my first initial flare I was able to come out of it with just antibiotics and now he is saying that I need max dose of asacol from here out to stay better. And also the fact he doesnt feel that I may need to have antibiotics again and perhaps just the max dose of asacol which I am on now. If I am not explaining this clearly please let me know but this is driving me nuts and may just have to call him but hopefully you all can explain any logic I may be missing or not missing.

Thanks

Whoa, first off, paragraphs. They make long posts like this easier to read.

Second, yes, it's possible and even likely that you have Crohn's, assuming the pathologist was even remotely competent. CD patients show a different pattern of inflammation than UC patients-inflammation extends through the entire width of the intestinal wall (transmural inflammation) whereas UC only affects the epithelial layer (superficial inflammation). While CD CAN occur anywhere in the digestive tract, sometimes it does just occur in the bowel, where it's called Crohn's colitis.

Also, there's medical record of antibiotics helping to clear up CD flares.

Thanks Mal, I am sorry about the not using paragraphs. I guess I should be more considerate from those who take the time to read and respond.

Oh I forgot to mention that my doc said that the diverticulosis I had been dx'd as having in the ER in Dec 11 was correct but it is obviously very small because he didn't detect it when he did the colonoscopy. I guess when they said you have "diverticulosis throughout the entire colon" it scared me and perplexed me. My doc also commented after I told him I always ate good and alot of fiber and he said it had nothing to do with it and that I could eat tree bark everyday and still have diverticulosis. I guess it is just part of my disease and I will wrap it in as a whole all together. I have issues with my colon for one reason or another. Call it autoimmune or whatever.

I am keeping a food log and always have been suspect of beer. Beer has always been a part of my life and plan on not ever having it again. I need to start eliminating things that I have done all my life especially some things like drinking beer. I plan on not having anything in the form of alcohol again for the forseable future.

Thanks for the replies.

Twiggs, I agree with the other commenters here and want to add about your original trip to the ER - they did a CT scan and diagnosed diverticulitis. I am not a radiologist nor do I play one on TV, but I think "diagnosing" a condition like diverticulitis from a CT is not the final word. A colonoscopy is the true and tested gold standard and I would not spend another minute of time worrying about having diverticulitis throughout your whole colon.

Thanks Gang, I do suspect beer alot and more so lately. It always has been tied to me being sick or feeling like crap. I beleive it may have something to do with the ingredients in it being hops or barely or whatever. I Just have to eliminate it once and for all to see if anthing changes especially over time. Beleive me it kills me to have to do this but I have to get better and start to make some changes especially in what I consume.

I can remember beer not agreeing with me and has been associated with some bad hangovers, diahrea etc etc. I think it can only give me some good info to just stop it completely at this point in time. As a matter of fact last summer I had that 3 month med free remission and remember on a friday I had 4 beers with my wife and a fire outside sitting in front of our chimnea and then that sunday wam! blood d and sick! Call it a coincidence but I can recall alot of times when beer and me either flaring or being sick have been associated. I was holding my own this last time during my vitamin e enema experiment which was med free for 34 days. I went away and had beers and then wam I flared big time! Myabe it was just enough to put me over the top because I was already seeing blood but heck that wasnt the first time.

As hard as it is to give it up completely I just have to do it. I will be watching carefully with my food log also to see if is matters. A summer without beer is much worste than a christmas without santa clause..!

Kaz, your right and I wont give the diverticulosis another moment of my time and worry. Thanks

Thanks all

Post Edited (twiggs) : 6/18/2013 11:38:59 AM (GMT-6)

I know for me, certain alcoholic drinks can upset my stomach the next day, especially if they're super yeasty like craft beer or unfiltered meads, irrelevant to UC. Cutting it out won't hurt anything (except maybe your taste buds) and you'll know if it's something that bothers you. You don't always have to cut it out entirely, but you can limit it.

Gary, Mal, Fruitgirl, This is something I never thought of and I think Gary is 100% right. I never heard of a histamine intollerance and it makes perfect sense. I read about all the foods that can give a person a problem when consuming and it seems to fall in line with alot of my problems. I cant beleive I never heard of this before. I guess I can try to follow the advice given on not eating these types of foods but it seems most have some type of histamine in it. So many of the foods I eat have some medium to high levels of this histamine in them. OMG what the heck!

I remember even when I drank red wine that is was a huge issue for me and gave me such a stomach and headache. I was doing fine up till today and for the last two nights I added back some yogurt and today I had really a really muckymuddy movement this am. I slept like crap and felt like crap all night. Was it the yogurt? I had to be. Not to mention I had a slice of cheese before dinner. My dinner was fresh cod, peas, some wild rice pan fried in olive oil pealed red potatoes and a slice of wheat bread. I hardly think that was the issue as I had that combo many times before.

Gary, does the supplement or enzyme really help that much for those with this intollerance? Is it something that can be tested for or is it more or less a trial and error kind of dx? Perhaps it is more than just the beer that was bothering me all along. If this turns out to be it then maybe all I have to do is limit or avoid these food types. Man I can't see me not having my spinach smoothies though seeing spinach is on the histamine list.

How do you think I should procede? My mind is in a tail spin lately with everything and just have trouble processing everything. I really appreciate any advice you all have been giving me.

If I tell my wife about this she will think I am crazy. I been all over the place with ideas and such

and I think she thinks I am loosing it seriously. She bought some fresh eggplant and I am supposed to fry it up so we can have it later for dinner. ugggh.

Should I run out and get some digestive enzymes? Or let my gut settle a bit? I also have to say I am on my 3rd day of getting some probiotics back in me and cant imagine that being a problem because I used these before without issues.

I just found this and they talk about taking antihistamines..I may want to get tested for this because it sounds very much like my issues perfectly for as long as I can remember. Even long before my DX and as far as I can rmemeber back.

Btw Gary, I was DX'd with Crohns/colitis 18 months ago. Did it just take that long to break? I am reading the below link and all these intollerences can lead to intestinal bleeding. I think you all should read this as it goes into detail about histamines big time.

http://ajcn.nutrition.org/content/85/5/1185.full

What do you all think?

Post Edited (twiggs) : 6/19/2013 7:10:35 AM (GMT-6)

twiggs, have you ever done an elimination diet or tried to see if you're lactose intolerant? That's my first line of thinking if you were doing fine til you had some cheese and yogurt. Lactose intolerance is really, really common in adults.

Steve. All this can cause brain overload. Been there done that. I go through periods where my brain sucks up information at an incredible rate and then I get to the point where my brain is fried and I can't do anything more for months. I discovered my histamine intolerance because I would have severe UC problems immediately after eating certain types of foods and yeasts. I knew I was not lactose intolerant so I began searching for those several things that were causing me severe problems and discovered only one thing that was common to all - high histamine content. This led me to discover that many UC'rs were low on DAO. I don't think you can buy DAO in any stores that I know of. I order mine online from Swanson. There is another product called Histame which is DAO with another ingredient added and more expensive. You can find reviews on both Histame and Swanson DAO. It helps me tremendously and allows me to eat foods which I couldn't eat before. The higher the histamine content, the more pills I take. Unfortunately, it is not an exact science and DAO does not cure UC, it only allows you to eat those foods again without making your UC worse for doing it. There is a lot of info on the subject but very few here ever seem interested in investigating this connection for themselves. Many would rather just eliminate foods than go down this route.

Which probiotic are you talking about? I took Florastor and it made me violently worse, which helped me on the path to discovering histamine intolerance. Florastor is made of a yeast and yeasts are high in histmaines. I have also seen many probiotics here on this site where they worked great for one person and caused others to get worse. I believe a lot of it has to do with microbial imbalance in the gut but the problem is everyone has a different imbalance, thus one probiotic helps one person and makes another worse. It could also be that with UC our immune system is attacking a good bacteria in our colons and if you introduce more of that one bacteria then our immune system ramps up even more trying to kill it off, making us worse. Maybe that's why it is difficult to find a cure. Our immune system is killing off one or more of our good bacterias, causing an imbalance but if we try to rebalance it we get worse. So we are forced to try rebalancing our guts with a different balance than we had in the first place.

I went to see my ND today to talk about my igg testing that I had done seceral months ago. We spoke about the results and at the time I thought it covered the delayed testing also but it didnt. She really wants me to get the delayed sensitivity testing done as this one would tell more about what could be my issues. I decided that for 150.00 bucks I guess it can give me some valuable information so called back and left a message to see if I can go back in to have some blood drawn in her office to be sent out. Otherwise she wants me to stay away from probiotics untill I heal some more and sdhe also recommended that I take some L-glutamine 1000mg a day to help me heal and firm up my movements. What do you all think about the delayed testing and also taking the l-glutamine right now? I see improvement this am and am scared to death to take anything but she told me it will be fine and will help me. She also told me that she has some patients who are completely off of the asacol and have been for a long time after identifying some delayed sensitivities and such.

Please let me know what you all think.