Long time Chron's person

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Joined
Nov 28, 2011
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8
Location
New York
long time Crohn's person

hi all, been on the Internet for years, had chron's longer, and never put the two together until now. I started having problems in my junior year of high school in 1988, but at that time was misdiagnosed with pancreatic problems and put in pig enzymes which did next to nothing for me. before the missed diagnosis my parents believed I was anorexic as I refused to eat when in pain, needlessto say at least I thought I finally found a name, and my folks felt better when I didn't eat. even with the diagnosis, I was sick my final year of high School and missed almost all my final semester, but did well enough to graduate and go off to college.

things calmed down a bit until my junior year, when things flaired up again, and I got sick. this time I got lucky, and was correctly diagnosed with Chron's and our on Asacol. I took it for. a while but didn't feel it helped much. I modified my diet, and basically only ate meat, chicken, non fried potatoes well cooked vegies and candy.

while I lost weight, I was not in pain, but not close to well. when I had flareups, I would go to the doctor and be put in prednisone. at some point I also went on to 6no. Skipping ahead, I graduated and went to law school in NY and basically stopped medicine. I would self medicate will Codiene pills I had horded up over time, and some other drug that will remain nameless, but did help the pain and made me hungry.

I made it through law school, and actually did very well, but by my final exams, I was in rough shape. after exams I started to study for the bar exam, and was self medicating a lot to get rid of the pain, and to be able to eat. I took the bar, in pain, and passed. by this time I was also interning, and working long hours, but I would always be OK at work, and self medicating at home, but after about three months of non stop work, and Long hours, my body gave up. I keeled over at work, and drove myself to the doctors, where it turned out I had a blockage. they admitted me to hospital, and I spent several weeks there with feeding tubes in my neck on large doses of prednisone and pain killers to try and avoid surgury. it was several weeks of futility as I had my first operation after six weeks in hospital. both a small and Large bowel resection. while there I restarted 6mp and recovered well.

the next few years were good but I eventually stopped 6mp again, and did have a few flareups now and again. prednisone was used to help, but then I started to have issues in it. I developed pancretitus when I took it, which resulted in further hospitalization. now that I couldn't take steroids anymore I had a problem, the next flare up landed me in hospital again, and I had another operation. By this time I had a new doctor, doctor kornbluth and a great surgen did some repairs, rather than resections. back on 6mp I was doing fine.

a few years after, I had my checkup, as I had a minor issue, and we found a narrowing. while not required, I elected to have surgury to fix it. that went well, as I wasn't sick recovery was quick. I also started remecade in addition to 6mp and have been fairly good since 2004. I do get the occasional flare up, but all still looks good inside. I have up self medication 13 years ago, and now rely on my doctor. I did stop taking 6mp for about a year and a half as my wife And I were trying to have A baby (even though doc said it wasn't an issue) but I am now back on it and have infusions every 8 weeks.

I do feel good, especially a day or too after, and tend to start to feel bad about a week before, but all in all I feel it is controlled, and an very thankful for having found doctor k, he has improved my life greatly.


so believe it or not, that's my shortened story, any questions,

I will add, I have tried many homeppathic and alternative meds to no avail, even getting sicker from some, and do believe in watching my diet during flareups, but what I have learned most is to take my meds, get my blood tests regularly, see the doctor at least annually if not more, and be open minded.
 
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Hi and welcome to the forum! Thank you for sharing your story. You've been through a lot, and I am so happy to hear you are doing pretty well now. Stick to that treatment plan of yours! And your doctor is right, your meds won't interfere with trying to concieve. Check this informative article out from the CCFA: http://www.ccfa.org/media/pdf/FactSheets/pregnancy.pdf

I hope you continue to do well and you and your wife can expand your family soon!
 
Hello, I too have only decided today to go online about my crohn's. I am glad things seem to be heading in the right direction for you. I recently had an op on the 16th Sept and am now having a fews issues which I hope will be cleared up soon so I can continue towards my goal of starting a family next year.
 
:welcome: nygman! Your story was alot like mine only still awaiting for remission. My last resection should of never been done by the quack and old fart general surgeon. I am really trying to avoid the 3rd surgery and is now sought to really make that your last resort. Every time you have surgery it can come back faster. I am on Cipro and Flagyl for now til I get in to see a new gi.

Twin boys!!! Whoa you have your hands full! I have a step grandson and love him to death. Good for you not to be on 6mp during trying for a baby.

What kind of law did you study? Kudos for you and your struggle with Crohn's along the way, you are one of the brave ones. Glad you joined our community!
 
In retrospect I would not recommend it but we had two Miscarriages both with genetic problems while I was o n it, and even though doctor said it was unrelated, that label on the side of the pill bottle didn't agree. In the end, against doctors advice I went off it and we had twins, but I now don't think 6mp was to blame, as other people haven't had issues with it. As a side note, after going back in it the bottle no longer warns about pregnancy risks, so I guess doctor was right.

As for law, I do tax law, and through it all I never let my illness get in the way of things, I believe we all have things in our life that can cause difficulties and hardships, but we must work through them. Sure I take a day of work every 8 weeks for infusion, and have some bad days every so often, where I have to excuse myself and run to the bathroom, but you know, that's life. Even without this illness people can have that happen.

I am always open and honest with people at work about it and treat it very matter of fact. It is what it is, just something I have to deal with from time to time.

I will add, I have two cousins that were diagnosed a few years after me. Both live in London, and use their illness as an excuse to do nothing. They both live at home with their parents (they are in their late 30's early 40's) and claim disability. I know I am worse of than them, they have never had an operation, but they have chosen to milk their condition, something I could never see myself doing.

While this illness is an inconvenience, it shouldn't end your life. I got married to a wonderful woman who accepts me for me, with my illness and everything that goes with it, plus I now have two amazing boys, what more could I ask for.
 
What an amazing attitude you have!!! We need people like you. I still dont like meds or drinking with pregnancies, heck I even quit smoking the day I found out. I had to previous miscarrages too, sometimes it is your body getting ready for a good strong healthy baby...and you times two! You must be happy.

Looking after yourself does go along way, and yes some people do milk it out but life has so much to offer. Some people are in constant pain I know I was at 32 and was so ill and my daughter was 4. She is healthy, knock-on-wood and is almost 24. She is on the Deans list and Presidents list in University. Yes I struggled and I nursed her for almost a year and she is a healthy young adult. I worry because I too have sisters and brothers who also have a form of IBD, not one of us ever missed a day of work. Until I got laid off. Have an amazing husband who is my hero. He gives me the strength to go on when my crohns gets bad. I do what I can and we too are honest to the bone lol.

So glad you are in a good place. Welcome aboard!
 
Thanks again, I know those days of pain, and have had to work through them many a time. I do it because I will be damned to let this thing beat me. Thankfully I have for the most part not had long period of pain recently and when I have, I have been able to manage it with some prescribed pain pills, which helps the symptoms but is no long term solution. Plus there are cons to taking them, besides the loopyness. It is important to get control over it with meds. It takes time to figure it out, a good doctor helps. Sometimes they stop working and you have to try something new. I have been on asacol, sulfursalazine, methotrexate, Cipro and other antibiotics, plus a few more pills I don't remember. Now 6mp and remecade are working for me. I have had setbacks, but having a good doctor helps. Right now I feel good, but I just take it a day at a time, let's see what tomorrow brings :)
 

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