Judy's page

Judy's 7 month old shih tzu - Teddy

Well, where do I begin...at the beginning, I guess. My name is Judy and I've had crohn's over 35 years, most of my life, luckily contained in my small only. . Began having symptoms when I was 12, many trips to hospital for what they thought was my appendix, right side pain so bad but they couldn't figure this out. Started to drop weight at this time as I was a chubby girl for my age so thought this was great at the time.

By the time I was 15, I had dropped down to 75 pounds and wouldn't eat (I think because I associated eating with the pain). My mother took me to over 15 doctors in two years. The last being in the big city near us as we lived in a small town 25 miles from there. I remember sitting in the back seat, hating her for this and now I know she saved my life.

These doctors misdiagnosed me as being anorexic. I had just turned 17 (in '71....now you know my age!) and was 75 pounds and dropping. I was only 5 feet 2 inches and will always remember the ridicule I got in high school for my size. Kids can be so cruel. So the doctors said unless they put me in the hospital as soon as possible, I wouldn't live much longer. My mother had to do something and agreed to this but never realizing they were putting me in the Psych ward till I got to the weight of 110 pounds.

This was one of the worst times in my life. They had this list on the wall. I couldn't see my parents till I gained 5 pounds, couldn't have mail, radio, or go out of my room unless I gained 1/2 pound a day which is impossible with all the fasting tests I had for the first month. So, of course, I wanted to die. I felt my parents had abandoned me and I would never see them again. The nurses watched me eat for 1/2 hour only, all the food I didn't eat, they gave me a liquid supplement that was 70 calories per ounce to make up for it which I drank a ton of. But the first few days were the worst. Being so upset, of course, I couldn't keep anything down and I lost two pounds. Then they threatened to "tube" me and also take my bed out and just have a mattress! Have you ever heard of such torture? In those days, eating disorders were handled this way. Now they have their own wing. So this did the job and I slowly started to eat and gain the weight.

Took two weeks to see my parents, a day I will never forget. I got weighed every morning, always drinking a ton of water to try and gain that 1/2 pound. Most times it didn't work. At 83 pounds I got to go out of my room and see these "crazies" who I found out, were mostly emotionally disturbed people, depressed and suicidal people and drug addicts trying to get off the drugs (again before rehabs) so these people were not dangerous. They had me on the "best" floor so I know there were worse people below and above me as I could hear them. But I made some truly good pals. Even met a girl who was anorexic, truly anorexic as she would eat everything to get out of there and come back within months. She had done this many times I was told.

Anyway, getting to the crohn's part, I kept having such bad right side pain and had many barium x-rays and they saw nothing. In the second month there, they repeated it once again, and low and behold, they saw the crohn's! They knew they had misdiagnosed me (why I didn't sue is beyond me!)but still kept up with this weight gaining schedule for some reason. I guess I really needed to gain this weight to live. To try and shorten this, I was in there three months and never got to the weight they wanted but close.  Was so glad that this wasn't in my head as back then anorexics were looked at as being crazy.

I went back to my senior year and most didn't recognize me. It was a tough time all during high school as I couldn't do anything in gym classes (why I wasn't excused medically is beyond me at that low weight). I have bad memories of high school, even after the weight gain.

You see I have a healthy twin sister who excelled in everything while I was still pretty sick. So being compared to her was very hard. I had many flares in my senior year. I was only put on azulfadine at the time and when it was really bad, the dreaded prednisone that blew me up like a balloon. We crohnies all know way too much about that drug...I now refuse that drug no matter what.

So graduation night comes, the only night I could go out all night for parties and I have a bad attack and  almost didn't make the ceremony. These are things you never get over. My twin got to go with her boyfriend (what was that??) and I was home alone as my parents went to the first party that is for everyone. Crohn's takes a lot of things away from your life. At this time I was still seeing a pediatrician believe it or not. He saw that the disease was progressing and referred me to my GI doctor whom to this day I dislike but that's another story.

I was able to get a job at 18 in an office and able to work with this disease till five years ago. I was on every maintenance drug and finally given pain killers in my twenties for the excruciating pain and "d".  Codeine was the first and that helped with the "d" and then darvocets. I lived on immodium (back then it was a very expensive prescription) in order to work daily without living in the bathroom.

Those were the "good" years. I was able to go out and have fun and even got married at 23. Didn't last long but it was a good party! When we were married we talked to my doctor about having a child and back then, he pretty much told me I couldn't have a healthy child with all that I was on. That just broke my heart and still does. My one regret in life. It really upsets me now that women with crohn's are having normal babies, even with meds, so I guess I was born way to early for this disease. Another casualty of this disease.

I got divorced andchanged jobs and moved to the big city. I would say at this time (I was around 30) was the best years of my life. Had the most fun and not many flares. I loved my job and the people. In my ninth year there, the disease started to take it's toll and I went out on disability for months, months of prednisone and methodextrite and even signed up for an experimental trial. But then it calmed down, started on 6MP at that time with pentasa. Also was living on the painkillers so that I could go to work and hold down a job.

 My company moved out of the state but I found another good job in '91 that I truly loved. Was good for a couple of years and then missed a lot of work, too much pain, "d"...had many tests and I had many strictures, was losing weight so after 27  years of dealing with this disease, I had my first surgery. A stricture plasty which I'm sure most of you know is where they open up the narrowed areas of which they found six! No wonder I was in so much pain. And thankfully while in there, they took out my appendix so I don't have to worry about that anymore. The surgery wasn't so bad except for that NG tube. I really enjoyed the morphine button.

So I felt so much better and was ready to go back to work after 5 weeks. But my boss wouldn't let me. Said this wasn't a cure and my job was very stressful and they would look into what they would do for me.I waited weeks and they insulted my intelligence by offering me a part-time position that would take my benefits away which I needed desperately. So I turned them down. This man was out to get me. After all I did to get my health back where I could work again and to be discriminated against, not to mention, they stopped paying me.So I did what I had to do, I wrote the President of this company (which was a huge company of 40,000) and told him how I was treated. Well, the next day I got a call and a job the following Monday. Wasn't my original one but it was a simple data entry job, no brainer. I didn't complain. I needed the money.

After a year or so, I was promoted so that worked out well. I was up for another promotion when sadly, in '96 I was told my mom had 3-6 months to live (cancer) and this got me into a major flare I couldn't get out of. Missed a lot of work, tried to work from home, pain was so bad that my doctor had me on percocets at this time. So by '97 I couldn't go on anymore. Went on total disability (my doctor always said he wondered how I ever worked this long as I was one of his most severe cases).

Went through my mom and dad's deaths in the next few years, more stress, more pain....no quality of life. I progressively got much worse after all this. The worst part started a year ago in March. Was in and out of hospital for "bowel rest" and IV steroids. Also had problems with my esophagus so ended up having 3 scopes..come to find out I had a stricture in my pyloric valve that needed to be stretched. Why it took him three tries without sedation is beyond me. I had much more pain, pain meds didn't touch it so he added fentynl pain patches. At my worst I was taking 15-20 percocets a day, with two pain patches and still had pain.

By May I had a small bowel follow-thru, barium enema, and CT scan of abdomen...they could find nothing. By July I was rushed in the hospital with what I thought was a blockage. Had x-rays and was told I indeed had blockages and was kept overnight. The next day, my doctor had sent a second opinion doctor as my GI doctor of over 24 years said to me there was nothing he could do for me!! This new doctor said he didn't believe I had blockages (because I had the big "d" in the hospital) and he wanted me to repeat the barium test. Two days later I did and after 7 hours, the barium still hadn't made it to the colon so yes, I did have at least one partial blockage and narrowings. The radiologist showed me the x-rays...to see my small intestines blown out about 5 times the normal size was shocking. This was a blockage, partial. They all agreed I needed surgery and soon.

After all the mistakes they made, with all the tests, missing all the blockages the first time, there was no way I wanted this hospital to touch me. I had heard through my aunt (who had crohn's, she passed last year) that the Cleveland Clinic was way ahead of every hospital in thenation in crohn's disease. I did my research and wanted to go there, even though it was a four and a half hour drive from my home in upstate NY. I made an appt in the first week in August with the head of the GI Dept. there and a colo-rectal surgeon. My sister and I made the long trip.

This place is unbelievable and I would recommend it to anyone with a very complicated case. The biggest digestive center in the world the sign said....this huge building was all GI related. Never have seen anything like it. And people from every state, country, were there to get the best help there is. I saw Dr.Lashner first, one look at my x-rays, he said you need to see the surgeon now. I said I had a 1:30 appt with one and he said good...that's about all he said. Went to the surgeon, he told me after reading all my files that I am one of his most complicated cases ever! This from a surgeon that sees nothing but difficult cases. Then he left to see my x-rays...came right back in and said you will be operated on Monday (this was a Friday). Then he saw I was on 6MP (purinenthol) and said there is no way he can do this as I will not heal properly without going off of this drug for one month!

I had already been on a liquid diet for 2 months and had to continue for another.  I was so weak. Went back home. It was a long month of August. I flew back there by myself at the end of August for pre-op tests. It was a long weekend here (labor day) so I had to stay in a hotel for four days alone. At least I had my trusty laptop. Oh, forgot to tell you the first afternoon I was free, Ruth and Bart picked me up, three days before my surgery. Had my "last supper" with them at this cute little jazz restaurant/bar. She showed me where she worked, gave me the tour and told me all the hell that she and Bruce went through when Bart was so so sick. He looked at me and told me he would never do it again. He's only in his late 20's so I can understand after all he went through. He told me what to expect as there was a chance I would wake up with an temp ostomy for healing purposes because of how extensive this surgery would be. He had this after his surgery.

By the grace of God, I didn't have this when I woke up but I woke up (after a 5 hour operation) in so much pain, it felt like I was cut with no pain meds. Well, because of all the pain meds I had been on, my tolerance was sky high meaning it would take a ton of painkillers to get me comfortable. I screamed and screamed. If I could have gotten up and jumped out a window I surely would have. They tried and tried to no avail and finally called the pain management people which took another half hour. One nurse told me to "shut up" as I was scaring the rest of the patients in recovery! I will never forget that. They had me tied down as I was thrashing so badly. The pain management  people tried morphine and I had an allergic reaction to it!

They finally gave me an epidural of fentynl and this did take the edge off.  I had two resections (three feet taken out) and 2 strictureplastys. My surgeon said that he blamed my GI doctor for letting me get this bad and being on all these narcotics. He said I must get off of the painkillers or at least drop them after I heal somewhat.

The recovery was tough with no family there. Many phone calls did help. I even talked to Caz in England! She is wonderful. This was the first time I heard about your board, Nikki, as Ruth told me that Nikki posted a cheer for me! I wish I had known where the site was at that point.

WhileI was in the hospital, my dog that was my life had to be put down with renal failure. He was only 7 so this was a shock for me. And a week after the surgery, the tragedy happened. There I was in my hospital bed and watched it live!

hey wanted me out after six days but I had no energy, so weak I couldn't walk and said there is no way I can be released. They let me stay another two days and then I went to the hotel nearby which they wanted me to in case of complications, like leaking.

It was a rough few months and I'm finally better. I'm down to 3 pain pills a day with no patches. Still on 6MP and am able to eat solids finally. Gained a few pounds back that I needed (I was a skeleton after that surgery, mostly due to the liquid diet for 2 months). I'm slowing gaining my strength back and able to go out to dinner and even have a couple drinks...something I hadn't been able to do in over a year.

So life is much better and the surgery was well worth it.  I, like Bart, will have a hard time deciding if I could ever go through that again but we have to do what we have to do, we cannot give up. I still live with the flares. Oh, also found out I now have a mild case of diverticulitis which my dad had. So far this hasn't caused any problems except chronic constipation! How ironic is this after years and years of the big "D" and now I have to drink prune juice to be able to go. I was on laxatives before the surgery but my surgeon said get off those and drink the natural drink. It works well but does cause flares as it works too well.

Most people with diverticulitus eat fiber and veggies to get things moving...we can't do that....a catch-22 for sure. I even started a low impact exercise class with my sister after getting permission from my surgeon. Have only gone a few times but I think it will help get my strength back. I have trouble opening my meds vials! I should ask for the adult tops, those child proof are adult proof for me lately!. So I do hope I stay this way for some time to come but we know all about this disease. Never know when it will raise it's ugly head.

One other thing I forgot to mention,after the surgery I had this immediate what I thought was bladder pain and they gave me cipro as they thought it was an infection from the catheter. Well, the cipro never worked. the pain would come and go in the pelvic area for months. So in November I went to my GYN and he said that after this type of surgery, sometimes fluid builds up at the bottom of the incision or even an adhesion...I said, no, not already! So I had an ultrasound and he was right, I have fluid there and he could see an adhesion. He said this usually goes away by itself so we repeated this 2 weeks ago and I knew by his face that it was worse, more fluid in there.  So again he wants me to give it another two months. He said he is one of the best lap surgeons in the city but with all the extensive surgery I had done recently, he wouldn't dare go in there as he could make things worse. He said if I was a "normal" person, he would go in and suck the fluid out and clear out the adhesion.

So the pain is starting to get worse again lately. I am worrying about this as I don't want another surgery and no one here will do it anyway. And I can't go back to Cleveland as my HMO had a fit about this. They finally allowed it but said never again. It's always something. I also got dxed with fibromyalgia right before I went on disability (more pain!), I think brought on by the stress I was under and now I read that many people with crohn's have this, they call it a crohn's related ailment. A Kathy and Vogkat both have fibro. And many more have the arthritis that is related to this disease. I also have that in my neck.

Well, I guess I'm done...sorry about the book. There's so much more I could have included but this is way too long as it is.

With all this experience, I do hope I can help others on your board, Nikki.......

Judy