Crohn's sucks

Crohn's Disease Forum

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Joined
Sep 2, 2012
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Hello all,

I am not sure exactly where I should start, so I will just get right down to the good stuff.

I was officially diagnosed with Crohn's Disease on April 9th, 2012 after a Colonoscopy in which I awoke mid-probe. (They apparently underestimated my poor, diseased body's ungodly ability to metabolize medication; narcotics and sedatives in particular). It was the most awkward moment of my life, but it was rather interesting. I am sure my GI doc thought I was a weirdo for asking so many questions while having a camera up my butt. Maybe I am a weirdo for mentioning those little details publicly? Oh, well on we go!

About two years ago, I developed terrible indigestion which I attributed to possible, extreme lactose intolerance/ a mild allergy to dairy (it runs in my family). Being eastern European through and through on BOTH sides of my family, giving up dairy is like depriving me of a limb...maybe even multiple limbs...It is like taking an arm and a leg and expecting me to run a marathon.

In case you haven't noticed, I like to talk. Especially after a long day of work when I am falling asleep. The words just pour from my mind, to my fingertips on the keyboard, to the screen. If you met me in person you would think that I have MPD or something because I keep most of my voice inside of myself so that I can write rambling posts like this! Okay, more about my "****** intestines" (get it?!)

At the beginning of February this year (the week of my birthday. ******, right?) I noticed that my abdomen was distended and I was uncomfortably bloated constantly. I thought it was the result of bad shellfish, but when the symptoms persisted I began to worry. About two and a half weeks later I went to the ER because I thought my appendix had burst. They didn't take me seriously and proceeded to load me with Phenergan, morphine, and other good stuff to shut me up. They did run a CT scan and stated in my discharge orders that it was "possible crohn's", but were treating it as a bacterial infection from the shellfish.

Two days later I was back in the ER, my pain didn't go away so they gave me MORE narcotics and stopped the antibiotic I was on (because it obviously was not an infection). Still they wrote "possible crohn's". Finally my wonderful boyfriend found a GI doctor in Vancouver, WA who is one of the best and had an immediate opening. Within five minutes of seeing him, I was admitted to the hospital down the street. This was the last week of February. Mind you, by this time I had not passed a normal BM in three weeks and looked seven months pregnant (I am in no way exaggerating here, really).

In the hospital they made me consume a wonderful drink that tasted like flat 7up in order to get a clear CT scan. In the last three weeks I had not consumed much more than water mind you, so this stuff made me SO nauseous. long story short, I puked all of the nasty stuff up but they still got an incredibly clear image. After two days they gave me a NG tube and I was royally pissed off until they took it out. I almost yanked it out myself, it made me THAT mad. I was in for five and a half days, and it was speculated that I would need surgery. Thankfully there was not enough scar tissue to merit removing a section of my intestinal tract.

I was in an out of the ER until July actually, because my GI doc is very adamant about the idea that should I be in enough pain to reach for a narco pill, I should be going to the hospital. I did not eat solid food until well into April, which is probably why I gained so much weight; ninety percent of my diet was pudding, and with the Prednisone it was like I had a vacuum cleaner on my face (someone said that once on a forum about Prednisone I think, and I am shamelessly stealing it)

I should probably mention that I was on Prednisone from February-July and gained twenty-five pounds (It is frustrating, because I was a ballerina for fourteen years and was always a size 0) My dosage went slowly from 60mg to nothing, not counting being shot up with excessive amounts of SoluMedrol during each ER visit.

I am almost done with my story, I promise...If you have read this far, good for you!

Now I am on Humira injections; one 40mg shot every other week. I feel better than I have in two years, not counting the weight gain. My physician is using a "top down" approach to avoid the buildup of scar tissue. Aside from being paranoid about infection, Humira is fantastic.

I am concerned that I have developed arthritis in my joints though. I think I had it before I was officially diagnosed, because I always had problems with the flexibility and pain in my back during dance classes but it is definitely worse now. I move like an old lady in the mornings and after I have been sitting for a while and my hands swell like crazy.

Aside from having ****** intestines, I enjoy riding my horse, drawing, hiking, and exploring the Columbia Gorge!

If any of you are near Vancouver, Washington I would recommend Dr. Casimo at the Vancouver Clinic. He has a wonderful personality and sense of humor on top of being an incredibly talented doctor.

I'll step off of my soap box now, have a nice day everyone!
 
Hello and welcome to the forum :)

I am glad the Humira is doing the trick for you. Out of interest have you ever had any of your vitamin levels checked? If not I would ask your doc to get these done especially your vitamin D. Also is your doc aware of the joint pain, if so what have they said about this?

AB
xx
 
Hey there and welcome :)

Thanks for joining and sharing your story! I'm also glad that Humira is doing well for you! I'd agree that getting your vitamin D tested would be worthwhile. If you'd like to connect with others on Humira, we have a subforum dedicated to it under our Treatment section.

Again, welcome!
 
I had bloodwork done two weeks ago and everything is normal, aside from my Iron (which I have had problems with for nearly a decade now).. I thought that the swelling was a result of my hay allergy since I have 6 horses and obviously have to feed them. As I mentioned, I had bloodwork done and saw my Doc but I didn't think to mention the swelling because reactions to hay are normal for me. I am going to try to see my general physician this week (she is an hour closer, and keeps regular communication with my GI doctor) to find out what is going on. Arthritis would explain a lot because I have had problems with my knees and stiffness in my back for years, especially doing ballet. Now I cannot wear rings because my Proximal Interphalangeal joints (the middle joints) are swollen, stiff, and SORE...Maybe I am a hypochondriac, I don't know. But with my first ER trip, the Nurse who evaluated me didnt't take me seriously and thought I was over reacting about my pain and it turned out to be Crohn's. Ha.
 
I also want to add that my general physician knows about my knee problems. She sent me to PT four years ago, and the therapist said my pain was a result of the hyperextesibility of my knees and I just did exercises to strengthen and release the tension in my quads...it worked for about a month after stopping PT and eventually lead to me quitting ballet :(
 
hate that word Hypochondriac.. overused and misunderstood , if youve been feeling rotten for a long time and have no LABEL , so too speak you get that one ugh , or neurotic .. lol thats another one , after diagnosis , any apologies , ? rare , good luck on ther humira ,
 

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