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What is the normal progression from diagnosis?

Was finally diagnosed with Crohns 3 years ago, after many years of the vague IBS diagnosis. So far have been admitted to the hospital from the ER only once, with only 2 ER visists other than that. For the most part I feel fortunate that my pain and discomfort are under control....thanks of course to a doctor who was willing to agressively treat right from day one! From what I've read on this site and others it seems that many others are in much worse pain....and I'm wondering if that is what I have to look forward to or is it possible I will remain in a sort of "remission" with only infrequent "flares". Really my only complaint is the daily diarrhea :(
 
Hey there,

Welcome to the forum! "Normal progression" is sufficiently different for most Crohn's patient, just as a lot of things that relate to Crohn's somehow relate to the individual in question. I was diagnosed in 1999, at first wasn't treated well at all - I was on Pentasa that didn't help with inflammation at all and basically had constant problems with diarrhea, loss of weight and finally after more than 3 years had "sufficiently" advanced strictures in my smaller intestine that I needed surgery with 60cm of smaller intestine removed.

Well, after surgery I swore to myself to do a lot more to not get in the same situation again. I was started on aza right away, did a lot of sport and generally didn't have many problems, I even considered myself in remission (although in retrospect I definitely wasn't because I frequently had diarrhea, sometimes also bloating, cramps etc.). Things got more problematic after a few years, lost weight and got tired more easily and iron and protein deficiency followed due go malabsorption. I battled with those problems for years, tried to even get off aza for 2 years (that didn't really help...).

I would say the third stage in my Crohn's career started early in 2012. I was hospitalized for severe iron deficiency induced anaemia. This time I took more radical steps, high iron supplements in liquid form and tablets daily (I found tabs that don't get me into trouble), other supplements such as magnesium, zinc, vit D, vit b6 and b12 etc., stress relief and regular endurance sport and getting my aza intake to the right minimum of 2mg per kg body weight. I got better soon and for the last about 16 months I have finally actually been in real remission(no diarrhea, no weight loss, not tiredness, no cramping, no bloating, no gasing, virtually no problem with the very occassionally minor problems if I eat something I really shouldn't eat).

Ok, that was a lot about my history. What I am trying to say is that the "normal" progression can go into many directions. For me I started out really ignoring Crohn's and not been well informed, then accepting it but not really knowing how to get to long term deep remission (I though regular diarrhea, bloating, gasing etc. is just there to stay) but thankfully finally did my research and started to really work on long term remission - and for me it paid off. Of course, as said at the beginning of this post, Crohn's is very much different for everyone and I know there are many people who have big problems despite really trying lots and lots of things.

Having said all that, are you on any long term drugs for Crohn's? How about any supplements to treat deficiencies? Sport? Stress relief?
 
thanks so much for your response.......and now it seems I'm even more confused - lol! It appears I'm not really in "remission" at all.....apparently I've just accepted the daily D, gas and bloating after so many years of them being present. I was taking Cimzia for about a year, but recently was switched to Humira. I also take Wellchol daily (for the bile salt binding effects...it does reduce the frequency of my D) and also Entocort. Additonally I was recieving monthly iron infusions and B12 injections but since taking the Humira those levels have remained consistent enough that i haven't needed for 3-4 months. I haven't ever heard of Aza but I will definitely look that up!
 
Just to be clear, my story above is merely one example - I tried to answer your question about the "normal" progression of Crohn's... There really is no normal progression, it very much depends on the individual case.

Azathioprine is an immunosuppressive drug, next to biologics (Cimzia, Humira, Remicade) it is one of the two effective long term drugs, although biologics are statistically more effective.

One of the things I tried to say is that it took me too long to get informed well enough about all the background on Crohn's and all available meds and non-meds treatment. Additionally, I have realized only after many years that managing Crohn's is like a puzzle with many pieces required to fit together. With a bad diet, no sport, negative stress etc. I guess I could get into trouble quite quickly regardless of taking a drug that helps with staying in remission.

Lastly, I would encourage you to read up on corticosteroids like Entocort. First, Entocort (unlike prednisolone) only fights inflammation on part of your intestine. Second, steroid use should be limited to as short a period as possible and only used to fight severe flares. Steroids, among other things, can lead to a thinning of tissue in your intestine - which through long term (over many months or even years) is problematic. There are several threads on this forum talking about pred and entocort (budensonide).
 
There is no normal progression. Every person with Crohn developped another pathway with his or hers own progression. Sometimes lucky without severe symptoms and almost no medicins. Sometimes with Crohn in it's most agression way with severe problems and a lot of medicins. I had a lot years not many symptoms and flares to overcome. Maybe I was lucky because I was using prednisone for my asthma. When I stopped the prednison last august because the asthma was in control I didn't now about the Crohn. And I wasn't untill april when I started to flare badly. They used the step up method for giving medicins for the Crohn and started with pentasa. Tried a lot medicins wich not where helping anyway. Now I am in hospital with severe symptoms and should start azathioprine, sulfasalazine, prednisone IV and remicade and everything is started together to recover and avoiding things get complicated.
 
Yeah everyone is so different and like you I worry about the uncertainty of my future and how my disease will progress.

my disease started with an emergency bowel resection for a bad flare and I've been started on pentasa which I don't think is really doing anything plus I'm trying to control my anaemia. Not sure if I am in 'remission'.

Everyone has a different story to tell :)
 
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