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Sorry so long....I tried to shorten!

Hi, my name is Judy C., have had crohn's for most of my life, symptoms at age 9, diagnosed at 16 after three months in the hospital (mental ward as this is where they put people in 1971 for eating disorders), misdiagnosed with anorexia, after a month there, they finally diagnosed the crohn's. From age 12 to 16, I weighed 75 pounds, 5 feet 2 with many visits to ER with right side pain, always thinking it was my appendix, it wasn't. They treated me for anorexia, the worst treatment ever, had to gain 1/2 pound daily for any privileges which is impossible when fasting for many tests, couldn't see my parents till I was 83 pounds, that was the hardest part EVER.

To try to make a long story shorter, have been on every med you can think of back in those days, mostly prednisone which I won't ever take again. Was on 6MP for 20 years, tried Remicade when it first came out, they only let people have one dose a month in those days, it didn't help so I never had anymore. I now am left with half of my small intestines, CD just reached my colon in the past few years with mild UC.

Many surgeries, resections, and now my biggest problem is the painful adhesions that grow after every surgery, which cause partial blockages. I know I have one on the left side but I have been on a mostly liquid diet for the past few years, I live on Boost and protein drinks, have lost a lot of weight, the pain is the worst symptom, but I am on oxycodones daily for this pain, which now constipates me so I take Miralax every other day, after decades of the big "D", I now have to take this to go. I had to go on disability when I was 46, I don't know how I worked that long. But a script drug at the time helped, which is now over the counter, immodium. I don't need that anymore. That was my miracle drug in order to work. Didn't start on pain meds till I got into my late 20s, starting with darvocets, codeine 3s.

Years later, after a surgery at Cleveland Clinic where they saved me from an ostomy, I was put on the oxycodones for the pain as what I have left besides the adhesions is the very painful inflammation. My doctor says I'm in remission now, even though I have this bad pain every moment of my life. The oxys just take the edge off. I know things could be worse. I take it day by day. I have severe insomnia, fibromyalgia and crohn's related arthritis which is in my spine.

I take monthly B12 injections as we all know most with this disease, this is the only vitamin not able to be absorbed in my diseased small intestines. I do have some quality of life but that took awhile. I hope I can be of some help to some people on here as I know no other way of life, having this so young. I did get married but that didn't work out, one reason I think is my doctor at that time (1977) said don't even think about having kids as I was on so many different meds at the time. I now know so many women on more meds than me with crohn's, are having normal babies and that still makes me mad. My biggest regret in life.

I'm in my 50s now, people say I look much younger and that is because this disease stunted my growth for so many of my younger years, the only good thing about this progressive disease. I say progressive for me as one of my friends has it mildly and has for the past 30 years, no surgeries. As you all know, everyone is different. I hope and pray you all get into remission soon or stay mild forever. I now have to go to many doctors for all the different things the meds have done to my body. I have a new problem from this disease which I will post soon. Need surgery for this added problem in April. I do love music and still go to many concerts and see local bands when I'm having a good day. But hard to plan things as I never know how I will feel day to day.

I live on this pc, too. How I wish this was around when I was first diagnosed. Had an aunt who had this from age 23 to 74, sadly it turned into cancer after so many years. This is VERY rare many doctors tell me as I don't know of anyone else that this has happened to. I live alone with my two great dogs. Have been clinically depressed for decades due to this disease and not one anti-depressant works for me! Tried them all. As you know, depression goes hand-in-hand with chronic illnesses.

Depression is very hard for me but getting out and seeing friends or even getting emails from friends checking on me, helps tremendously. I hope I can be some kind of inspiration to many....I've lived this long with this disease..I say to many with this disease, always get a second or third opinion if you aren't getting any better with the treatment they are giving you.

I almost died after one surgery, doctor snipped me on the way out, didn't know it, I filled up with blood for month in my right side, wasn't getting any better after a month and went back to see him, he said I was still healing, I knew better, called my GI dr, she said "you come up here now', they drained a huge bag of this black liquid which was month old blood...no one would tell me how this happened, went back to my Cleveland Clinic dr (I live in upstate NY and my surgeon at Cleveland Clinic says don't let anyone do surgery on me where I live, says I'm too severe for this area) and he told me the truth and also said, I would have died in a few days if I hadn't called my GI dr.

I'm glad I didn't know this at the time but I was in there another week, they were doing so many tests and I had so many IVs of antibiotics, I should have figured that out. I was days away from this infection going through my body...know your body....I'm glad I do! Good luck to all...sorry so long..if you ever heard the whole story, you'd say what most say...'you should write a book!'...

I do live in my bed, have had all the things I keep reading on here like the mouth sores, many skin problems, all crohn's related. I even got the shingles at age 38 with my compromised immune system! That was one of the most painful things ever. I don't know anything about the shingles vaccination but I believe it's a live virus so we would get it with our compromised immune systems. That scares me as you can get this more than once.

My one friend who has had this the same amount of time as me also had the shingles, she was in her 20s! She is my rock, my great support as whatever I've been through, she's been through or visa versa. You really do need some kind of support and I'm so glad I found this board. Thanks for listening.....Judy
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i am so glad you found this forum too.... I can hardly believe all that you have had to endure and have such a positive attitude. You are an inspiration!!!!

I dont think I could ever forget your life story after reading it. Im so glad times have changed!!! It is horrible to think of you in a mental ward. I bet you were a sweet little girl :)

I decided I am going to adopt you now :)

I look forward to hearing more of what you have to say. I hope the pain goes away soon.
Julie, thank you SO much! It's been a tough road for sure and I have so much more to tell you. Yes, the mental ward was the worst. Having your parents drop you off as this girl who looked 10 but was 16, not knowing when I would see them again. They watched me eat for 1/2 hour only, anything I didn't eat, I drank this high caloric liquid but first week, couldn't keep it down so they threatened me with tubing me! I remember it like yesterday, no mail, radio, TV, visitors, phone calls if I didn't gain 1/2 pound a day..I wanted to die! Yes, I was just a little girl, they did save my life but they were wrong in the way they did it. My pain won't ever go away but thanks for the kind words, means so much to me! Yes, we have to be positive about everything. Stress is the worst for this disease. I have sure found that out over the years. I see you have a daughter with it. I hope she is doing well. Take care!

Im so glad to hear you have your "rock" support. It is good to have someone who understands and you can laugh and cry together.

We are waiting to see if the doubled Remicade treatment is helping our daughter. She had a pretty good day yesterday, so I am waiting to see how the rest of the weekend goes before I decide to call her GI. She is like you and remains positive through it all.. she is amazing too!!!

Her dad and i support each other through this, and we are trying to get her the best treatment possible for her. We probably get more depressed than she does, because we worry so much.... but that is to be expected. :)

You would have made a great mother, I can tell. There are so many young people on this site that could use your advice, concern and support. It is hard not to want to help everyone of them.

I have been doing a lot of research about Crohns. I think it is the "research" stage. My latest findings is the use of Kefir to help give the body more useful bacteria. (we are going to slowly introduce that into her body.) The other one is a new diagnosis I am starting to see on here. I am going to have to start writing things down, because I always think I will remember :). anyways, some people diagnosed with Crohns, actually are having an allergic reaction and are being treated with anti-histimines. Their inflammation disappears!! thought I would share those two with you for now.

Tell me more about yourself when you get a chance.
talk soon

Hi Judy :)
I agree with Julie. To think of a sick child being treated like that is really upsetting, but your strength shines through in your post. I'm really glad that you have such a good friend IRL and I look forward to getting to know you better.
You should write a book!