I was diagnosed in April 2009 while stationed in England. I am from sunny California but currently reside in Washington. I am 31 years old with twin boys that will be 10 this Christmas and they pretty much fill up my free time. After 10 years in the military my UC got me medically retired and now I am a professional student.
I am currently in a flare, trying to get over it. I was hospitalized just this last weekend due to the horrible dehydration. I finally got my potassium levels back in normal range and am now just experiencing mild bubble gut, bloating and some diarrhea (or buttpee as we say in my house).
So, lets start from the beginning… I have always had shy bowels. I have never been able to #2 in public. After a 6 month deployment in Kuwait where I never had an ounce of privacy I returned to England where I was stationed with the US Air Force and I had buttpee for about 6 weeks before the bleeding started. My military doctors told me I was being a baby and I needed to go back to work becasue it was good for me. I cried in the Dr’s office because I was in so much pain, it hurt to put pants on let alone sit upright at a desk for 8 hours a day. I was so exhausted from the dehydration I would have to take naps on my way home from the Dr (which due to where I was stationed my Dr was an hour away). My boss didn’t understand, he thought I was being a baby and the medical people kept telling me it was a parasite. They were pumping me full of Flagyl and Cipro and Immodium and nothing was helping, in fact I felt like this was all making i t worse. After 3 weeks of bloody buttpee I was at a point where I was eating handfuls of frosted mini wheats just for the sugar high to stay awake. At this point I was finally sent to a British emergency room.
The British doctors admitted me immediately after seeing my stool sample, they knew something was not right (did I mention I had already given about 3 samples to the military doctors). I was told the reason I felt like I constantly had the flu was becasue my white blood cell count was off the charts and my body thought it was fighting an infection but it was really an inflammation of my intestines. When I was first admitted I was placed on a hospital ward with about 9 other women and a Dr came in to do a rigid sigmoidoscopy and it was humiliating. Every other woman in that room heard the blood come pouring out of my butt as soon as they stuck the thing up there. It was at this point that they said geez lets hurry up and get the insurance processed and get her into a private room. I was admitted on a Friday so I was not seen again by a Dr until Monday and my appointed GI was Dr Payne (yeah funny right). Dr Payne was a surgeon and he wanted to cut. He said he was going to pump me full of steroids and other things but if it didn’t start to work he was going to do surgery. I think at this point I had a mental breakdown. I was 28 years old, in a foreign country, alone, and I was about to end up with a poo bag. So much for military friends, as a single parent of two kids it was really hard to find reliable friends to help with my kids so this stress did not help my situation. My First Sergeant ending up helping me more than anyone, he took my boys and he and his family took care of them for the two weeks I was in the hospital. After 2 weeks of IV steroids and antibiotics as well as a colonoscopy they said I could go home. At this point my mom flew out to help me. Little did she know that the day after her arrival I would end up back in the hospital. I was sent back to the hospital because the bleeding had started again and they felt I needed more IV steroids. I was sent to the private hospital that Dr Payne worked at exclusively. After 6 days of IV steroids he did another colonoscopy and said I could go home and he sent me with a hefty prescription of prednisone, asacol and azathioprine. At one point I was taking 46 pills a day. It is unfortunate that I didn’t think to ask for a second opinion sooner… I was on the steroids for 6 months, it was taking forver to ween off. I had every side effect you could imagine. I had moon face so bad I could not move my neck at all or move my head very well… I looked like a say not to steroids ad campaign. I had buffalo hump, I gained 80 pounds (yeah after I busted my butt in Kuwait to get back to my pre-pregnancy weight I had now balloned up to 220#),I had rage, and severe insomnia… I could not vacuum my house enough or I would be rearranging furniture all night. I finally thought hey I need a second opinion, because these drugs are stupid.
I got the approval to see a new Dr… Dr Travis, he seemed a lot nicer and had been published on studies of UC, I felt like I was in good hands. Right away he weened me off the steroids and stopped the asacol, he wanted to do remicade treatments. He did his own rigid sigmoidoscopy in his office and scheduled me for a colonoscopy (so now I am at 2 rigid sigi’s and 3 scopes in a matter of months). We did 2 remicade treatments but I had such a weakened immune system that I was getting upper respiratory infections so we stopped and I was just on the azathioprine (250mg daily). I was finally starting to feel like me again…aside from being tired all the time (which they told me was because I was now anemic). After 6months off of work I was sent back on half days. After a few months of half days with a couple bad days where I just couldn’t go to work, I was place on a temporary disability retirement list and sent back to the US so I could “receive the medical care I needed.” It was the military’s way of saying your healthcare is costing too much out here so we are sending you home. This temporary list thing can last anywhere from 18 months to 5 years. Its funny they sent me home to get care but no one told me what was going on, was I still allowed to see sucky military doctors or was I supposed to get into the VA system… I had no clue. So I was home by the end of Feb 2010 and finally seen by a VA Dr (not a GI) in June, this was just the initial appointment to go over my ailments to get me into the VA system. I ended up buying a house in Henderson NV and finally gettign to see a GI Dr by May 2011. I had just been on the azathioprine and living life as normally as I could. Of course he wanted to do his own colonoscopy so I had that done the end of May 2011 (now at 4 scopes, 2 rigid sigi’s in a 2 year time frame). He kept me on the azathioprine until November 2011. I was not happy with his decision to take me off of it a s sometimes the VA can be a little on the slow side with getting the refills to you and I had a two week period where I went without meds. My symptoms started to arise so he ran some blood tests and determined that I was either not taking the meds as prescribed or my body was metabolizing they so quickly they weren’t doing what they were supposed to (I told him about the two week gap in meds but I don’t think he was listening). He started me on canasa suppositories on an as needed basis. I felt like, if my metabolism was THAT high then why couldn’t I burn off this steroid weight, why am I still taking naps in the middle of the day and why do I still have a small buff hump???
I have just recently (June 2012) moved to Washington. All the stress of the move and getting renters in my house back in Henderson has caused me to flare. I barely enrolled with a new Dr out here and got a referral to a new GI when I had to call to make my initial GI Appointment I also had to tell them I was beginning to flare. They said well we don’t have any appointments unti lOctober, but we will squeeze you in the end of August in the meantime we will send you some new meds. Well, their meds arrived Saturday and I was admitted to the hospital Friday night. I just spent the weekend in the hospital being pumped full of antibiotics (for some reason the Dr doesn’t believe I have UC and thinks I have C. Diff) and fluids because I was severely dehydrated and my potassium was below normal and a heafty dose of steroids. I was seen by the on call GI on Saturday and he said no more steroids have some rowasa instead. I was able to keep the rowasa in my body and let the med start working so they sent me home Sunday. Went in Monday to my regular Dr and she gave me a burst pack of steroids (I constantly argue with Dr’s I do not want to be on the steroids, its the drug I love to hate… it does what I need it to do right away but the side effects are horrid). I am on day 2 of steroids and I want to rearrange the furniture in my house :/ at least the rowasa seems to be working, no more fresh blood and no more waking up in the night to poo so hopefully I will be me again shortly.
My kids are always scared when they see me sick… I hate looking so weak in front of them, especially since I am all they really have. My best friend was ready to fly out here to give me blood if I needed it. I truly have a great support system, they are just scattered all over different states. At least I have a great boyfriend who is very supportive and helpful and wants nothing more for me to be happy and healthy.
Hopefully the new GI won’t want to do a scope if I can get the notes from my previous GI…. I feel like I have been poked up my butt more than anyone ever should be!
Where I’d like to be in 1 year:
In one year… I would liek to be in remission since I have yet to make it to that point, and I would really love to lose the rest of this steroid weight and maybe even able to tolerate a social drink every now and then without haveing to rush to the toilet.
steroids (the drug we love to hate) I feel that its a quick fix to the inflammation but thats it.
asacol did not work for me
azathioprine kept my immune system from going into overdrive and I felt was really keeping my body in check
canasa suppository after a few days in a row I get really sharp pains in my stomach
rowasa only on day 2 but seems to be holding up well
written by Jennifer
submitted in the colitis venting area