February 5, 2011
What A Week
What A Week
I will actually start with a couple weeks ago...I went and saw Dr. Reddy in Twin. He's a rheumatologist who Dr. Smith (my gastroenterologist) referred me to because of joint pain I've been having. After talking to him he said he suspected that I have rheumatoid arthritis, as opposed to arthritis related to inflammatory bowel disease. Anyway, he said he could tell there was fluid around my joints in my hands so he had me get an x-ray and did a bunch of blood tests. He also asked me if I've been tired and if I've been losing weight. My answer was yes to both of these questions so he checked my thyroid and Vitamin D level as well. He said to come back in two weeks and we'll talk about the results.
Ok so I have been anxiously waiting for this appointment, but all the while was not feeling very well. My usual stomach pain, etc. So a week later I called Dr. Smith and he wanted me to come see him. He seemed very concerned. We talked about several options...different blood tests, different medications we could try, etc. He said I have a harder time with my j-pouch than most people, which is something I already knew. He even told me that if I wanted a second opinion he would refer me to the University of Utah if I was interested in seeing what someone else would do for me, and if not we would just keep doing what we're doing. I told him that was fine and so he gave me the same antibiotic he gave me in November for C. diff, saying that it would most likely help whatever was going on. This time he gave me free samples so I didn't have to pay $80 for the stuff. :)
I started to feel better after a couple of days, but then over the weekend wasn't feeling so great again. My stomach started hurting all the time, to the point that I didn't even really want to eat. I went to work Monday and was miserable all day. I probably would have left early except someone else had already called in sick, so if I left they would have been way busy so I stuck it out. Tuesday I still felt crummy so I called first thing in the morning and he said he wanted me to go get an x-ray to make sure I didn't have a bowel obstruction. My stomach felt hard and distended. He also called me in another antibiotic to take in addition the one I was already taking. Tuesday I couldn't eat a lot, but did have a Subway sandwich that night for dinner. That was a mistake because I was sick all night, so I called Dr. Smith again Wednesday. He said that the x-ray was actually unremarkable, but that he still wanted me to come to his office, and that he might admit me to hospital.
My mom and I got there as soon as we could and the receptionist said, "oh good you're here. He's been coming out every 5 minutes asking if you were here yet." He saw me when I was checking in and actually came out to the waiting room to get me himself. I don't think a lot of doctors do that. :) While I was at his office he looked up all the blood tests that Dr. Reddy did. Everything actually looked pretty good, so that was a relief. The biggest thing he found was that my vitamin D level was really low. That explains why I'm so exhausted. He said I needed a weeks vacation in Maui to get it back up. :) But my hemoglobin was normal (meaning I'm not anemic), ANA was negative (meaning I don't have Lupus), my albumin was normal, CRP was normal, thyroid was good, etc. He wasn't quite sure about the arthritis because he said he can't interpret the x-rays like Dr. Reddy, but it sounded like it might not be rheumatoid arthritis, I'm not sure though. He was pretty concerned about my weight loss. I weighed 87 pounds in his office. A couple months ago I weighed 97 pounds, which is a normal weight for me. I told him I had been trying really hard the last couple of weeks to gain weight, so he was happy about that. Anyway he decided to go ahead and admit me and give me fluids and do some tests.
I was admitted about 1:00 and around 4:00 they took me down to do a sigmoidoscopy (which is like a colonoscopy, but only of the first part of the colon. Since I don't have a colon, Dr. Smith uses this to look at my pouch...I've had them before) and an EGD (esophagogastroduedenoscopy, which is to look at the esophagus, stomach, and duodenum, or first part of the small intestine). They put me to sleep of course, and did them both at the same time. Afterwards Dr. Smith told my mom that everything looked a lot better than he expected. There was a little inflammation in the esophagus and stomach and my pouch, but not enough to cause the pain I was having. He said it's likely that I did have pouchitis and that the antibiotic was helping that already. Since he didn't find anything significant, as soon as I was awake enough they gave me some CT contrast to drink so I could have a CT scan. It actually didn't taste as bad as I thought it would (I have had nasty tasting CT contrast before.) They had given me IV Demerol earlier and it helped with the pain a lot, but made me nauseated. Right before I left to do the CT, I threw up. Then after I got back I threw up again...and again. My sister brought her two oldest girls to see me. Poor Jenna was in the middle of telling me about a cool stunt she was doing for their cheer competition and I interrupted her by throwing up.
Anyway, the nurse said that Dr. Smith would call if there was anything abnormal with the CT scan. They brought me some food and I just coudn't eat it because I kept throwing up. The gave me zofran for the nausea, but it didn't help a lot at first. Finally the doctor called and said that the CT scan showed a cyst on one of my ovaries, and that my gallbladder looked a little inflamed, so he wanted me to have an ultrasound in the morning. Around 11:00 I finally got down a few bites of my soup, a couple bites of my roll, and two saltine crackers, which was the only thing I ate all day. The nurse was encouraging me to eat because I had to be NPO (nothing by mouth) after midnight for the ultrasound.
The night was pretty rough. I didn't sleep much at all. I had to get up a million times to use the bathroom. They were giving me 250 mls of fluid/hour, which is quite a lot. They were also giving me Cipro (an antibiotic) in the IV. I was also still having a lot of pain, and whenever they gave me the Demerol, I was nauseated and it wasn't always time for the zofran yet. However, once I got past the nausea, my stomach felt really good and actually felt normal for awhile (thank you Demerol!) Also during the night I was kind of startled awake by a burning pain in my arm where the IV was. I thought it would go away in a minute, but it didn't. The IV pump started beeping and the nurse came and fixed it and left. But the burning continued and finally I turned on the light and looked at my arm. I could not believe how huge it was! It looked like I had big muscles. So I called the nurse and before I could even finish telling her I needed her to look at my IV, she said, "Oh my gosh! That's a bad IV, we need to get that OUT." So that was an adventure. She kept having to put warm towels around my arm to get the swelling to go down. She tried to start another IV and couldn't do it (I was so dehydrated they had a hard time starting the first IV too). So she had to get someone else to come do it. In the morning the person taking blood had to take it from my hand, because there was just nowhere else to go. (At least that's better than having to take it from my foot, which has happened before.) Anyway, by morning I was feeling lots better and didn't need the pain medication much anymore. It still hurt some, but not enough to put up with the nausea.
In the morning I went and had an ultrasound, which ended up not showing much either. It did show some inflammation in the gallbladder, and it was a little sore when the ultrasound tech was pushing on my gallbladder. They found some fluid in my lower abdomen which they think was from the cyst on my ovary. Dr. Smith came that afternoon and we talked about everything. He said for the most part things looked good. He said that he wasn't worried about my gallbladder because my symptoms didn't seem to show gallbladder problems. He said if you don't eat well for a few days, that can cause the gallbladder to look distended. He said the cyst could be causing some of my pain, but he didn't think it should be as bad as it was. The cyst was a hemorrhagic cyst, which means it was filled with blood, and generally harmless. He said it might have even ruptured or dissolved into itself over night, because they could not find it on the ultrasound. He also said that when he did the sigmoidoscopy, he took some biopsies and that I bled a lot more than what is normal. He's not sure why and seemed a little concerned about it, but didn't seem to think it was really a problem. My labs looked normal except that my white blood cell count was up slightly. All in all, he was not sure what was causing the pain. It hurts more in my upper abdmen, which is unusual for me. He thinks that it might just be some sort of infection or virus, and maybe combined with the other things they found, that that's what was making me so sick. He also said I was very dehydrated when I came in. He sent me home on the same two antibiotics I'd been taking, along with prilosec and some pain medication. He also told me to take some Vitamin D, but that I probably need to talk to Dr. Reddy about it because he would know more about that. (I had to call and cancel my appointment with Dr. Reddy. It was supposed to be at 3:45 that day, and I left the hospital around 4:00). Dr. Smith told me to stay in contact with him and call him once a week. I was very happy to be going home and sleeping in my own bed.
That night I went to bed at 8:30 and slept straight till about 5:15. I NEVER sleep that long without waking up, it was amazing. I fell back asleep about 6:30 and slept untill 8:00. Yesterday I still felt lots better, just felt like my stomach was a little achy and sore. But this morning I woke up with it hurting again just like it was before. I've been taking the pain pills and they seem to help some, but not a lot. It was good they didn't really find much wrong. I found out my kidneys and liver and everything are great, but it's kind of frustrating not knowing why I'm still having this pain. It's hard to eat, but I've been making myself. I know I need to gain weight. My boss got one of the other girls to work for me Monday, so I don't have to go to work until Wednesday if I don't want to. We'll see how it goes. If I don't start to feel better I'm going to call Dr. Smith again on Monday or Tuesday. Dr. Reddy's office also called me on Friday but I missed the call and by the time I saw it 20 minutes later, they were closed. They told me to call them first thing Monday morning.
So I feel a little frustrated and still feel exhausted, but I'm trying not get too down. I took a looong nap today and had to make myself wake up. Hopefully taking some vitamin D will help that and I'll start to feel better soon. I am really thankful for Dr. Smith. He is the best doctor I could ask for. I had lots of people call and ask how I was doing, friends and family. My branch president called and my relief society president. Her and some girls in my branch sent me some flowers and so did the girls at work. My dad and brother gave me a blessing, and that was nice. My brother-in-law Ron left work for a minute and came and saw me too, which is nice. Him and my sister do so much for me and I truly appreciate them. My brother Chad told me that my nephew Nathan has been praying for me a lot. Nathan said that sometimes when he's at recess, he says a little prayer in his heart for me...how sweet is that? Today Taylor and Ian called and asked if I was feeling better, they are so cute...
Here's a picture of sweet little Halli who came to see me.
Well, sorry for the marathon post. Just wanted to write about it. I'll keep you updated.February 7, 2011
Positive
....was the result of my tests for Rheumatoid Arthritis. I called Dr. Reddy's office this morning (his nurse had called me Friday and said to call her Monday morning.) She told me my Vitamin D is low (which I already knew) and how much to take. Then I talked to the receptionist who said they actually had an opening today at 2:00. I was really hoping to get in today or tomorrow so I wouldn't have to take more time off work, so I was really excited. Anyway, he said one of the blood tests was positive for rheumatoid arthritis. He showed me the x-rays of my hands, and how around the knuckles and joints, it was dark (instead of white like the rest of the bone.) He said that meant there was inflammation. It doesn't really bother me all the time though, and when it does, it's not too bad, so he said it's pretty mild right now. Since we caught it early he's pretty optimistic that it can be pretty well controlled with medication, and hopefully not advance too much or too fast. He gave me a prescription for a medication which I can fill as soon as I get an ok from an opthamologist that my eyes are fine (I guess you can't take it if you have eye problems.) So I have an appointment on February 22 (my birthday :). He said it takes a month or two to notice improvement, but should help with the swelling and pain, and also give me more energy. Low vitamin D and rheumatoid arthritis can cause fatigue, so hopefully I will be getting some energy back soon.
But I'm feeling postive about it right now. I've been praying that I could be ok with whatever happened, and I really feel like it's all going to be fine. My stomach is about the same. It felt a lot better yesterday, but today it has not been as great again. I'm going to give it a couple weeks and see what happens. Wait until I've taken the Vitamin D and antibiotics for awhile, and then if I'm still feeling the same...well I'm not sure actually, I'll do something :). I will have to call Dr. Smith in a couple days because he wants me to call him once a week, so we'll see what he says too. Anyway, just wanted to give a quick update. Really I am feeling pretty positive today though. It's all going to be ok. :)
March 6, 2011
Feeling Good
Just an update with what's been going on with everything...I have actually started to feel better the last week or so. I have been calling Dr. Smith every week and letting him know how I'm doing. He hasn't really known what to do. First he increased my prilosec dose, which I think helped some but I was still having lots of other problems. I had a couple bad nights where I was in a ton of pain and the pain pills I had didn't do a thing. Sometimes I see Dr. Smith at the hospital when he's on call and one day he had me meet him at the 3rd Floor nurse's station and he gave a prescription for stronger pain pills right there (that's right, I know how to work the system). :) Anyway, then he put me on prednisone (of which I'm not a huge fan). He had me start with 40 mg for 2 days and then taper down, but I really didn't see a difference at all. He said he never has this much trouble with pouchitis. So he had me go back to the 40 mg, only this time for 10 days. I'm on day 4 and I feel SOOO much better! I can't believe it. It's a little scary though because I have bad memories of never being able to get off prednisone. Before I had surgery I took it for a year because every time we would try to lower my dose, I would get sick again. Then I dealt with all the bad side effects like bloody noses, poofy face, cravng junk food, grumpy mood, down to my adrenal glands in my kidneys failing and landing me in the ICU. Hopefully I will be able to get off of it quickly and I will still feel good. But it has been really refreshing to be feeling better.
On another note, I went to an Ear, Nose, Throat doctor in Twin the other day. I have been wanting to go to one for a long time and figured that since I've met my deductible that now was the perfect time. Dr. Smith referred me to him. His name is Dr. Mayes and I was really impressed. He had me get a CAT scan of my sinuses, and then let me go right back and talk about the results. Apparently I have a really deviated septum, which was nice to know. Also some other stuff up there is too big and making it so I can't breath and feel congested all the time. He said he could do surgery and I would definitely breath better. He couldn't guarantee that it would help the sinus headaches, etc. though. But I think it would be worth it to just be able to breath (although I hear sinus surgery is pretty miserable). I've always thought that most of my problems were related to my sinuses themselves, not allergies, but he said some allergies could be contributing too. He said he wasn't going to tell me what to do, but he brought up the fact that it would be a great time to do the surgery since I've met my deductible (it starts over in April, which is a bummer). So I scheduled it, but as I was thinking about it I decided it wouldn't be a good time. We are really swamped at work right now. The only day I could do it was March 31st (because of other people being on vacation, my brother coming to visit from Boston, etc), but that meant I would miss the first week of April. That is when I am supposed to start working 5 days/week and one of the other dietitians will be working more hours at the cancer center. Plus I'm planning to go see my brother in Boston in April for a few days, and I don't feel like I could take time off for both. To add to everything, my boss announced a couple days ago that she is leaving and her last day is March 25th, so we might even be out of a boss at that point if they havn't found someone new yet.
Friday I called and cancelled the surgery and Dr. Mayes' nurse is going to call me on Monday and let me know if he thinks we should do anything else in the meantime (allergy testing, etc.) I had allergy tests when I was in like 6th grade, but I guess it wouldn't hurt to do it again. I'm just tired of having a sinus headace every day of my life. So I will for sure do the surgery, but probably not until like July, when we've moved to the new hospital and can take vacations again, and have a new boss, and things have hopefully settled down. This week I've been dealing with a bad cold and cough, and today I don't have much of a voice. My boss sent me home early on Friday, I think because she was afraid I was going to get everyone else sick. I hope not...I would feel really bad. I feel like I catch everything that goes around and have it worse and for longer, but I guess that comes with a messed up immune system. :)
Anyway, I feel like things are looking up and I have had more energy. I have been staying very busy with church activites and hanging out with friends and family. Sorry if this rambled a bit, but there it is. :)
March 11, 2011
Good News
I changed my mind...I'm entitled to do that, right? :) I decided to have the sinus surgery now because it will be completely paid for. I had called and cancelled it and the nurse said she would talk to the Dr. to see what else we could do in the meantime. She called me on Monday and said that we could try allergy tests or something, but that he really thinks that surgery is the best option for me. He also said that I would only miss two days of work (he does surgery on Thursday and said I would be back by Monday.) The big thing that was holding me back was having to miss a whole week of work (like they originally told me). So I thought about it and decided to go ahead and do it. I work with such great girls at work who are always willing to cover for me or trade days or whatever I need. It took some major convincing of my boss because someone already has that Friday off, but I pretty much told her I was doing it. Everyone else said they would be fine without me. I scheduled it for March 31 (the last day that it will be paid for!) so I hope nothing happens that means I have to stay in the hospital. :) The other choices I had wouldn't work, so that's when it is. I feel really good about it. I have tried everything under the sun for my sinuses (allergy meds, nasal sprays, sinus rinses, etc) and I still have problems, so hopefully this helps at least some. Another reason I was originally debating about it was that I dind't know if I wanted to have a surgery when I havn't been feeling great and have lost all this weight. But I have been feeling really good the last week since I started the prednisone. So I called Dr. Smith on Tuesday and he said that I should be fine. I think that eased some of my mom's concerns as well. So March 31 it is!
On another note, today I was supposed to call Dr. Smith to see how to taper off of the prednisone, so I did and his nurse called me back and left a message on what to do. Then Dr. Smith practically chased me down at work today to talk to me. He said there is a standared way to taper off the prednisone, (which is what his nurse told me to do), but he said we could do it a little differently because with pouchitis you can do it faster than with like ulcerative colitis (I think because it's not as bad). I told him my cell number and our office extension so he could get a hold of me to give it to me. Then he got kind of excited and told me how yesterday he was talking to some rep who has a new test that they can do for pouchitis and ulcerative colitis. I didn't really understand it, but it helps you see kind of what the pouchitis is going to do, which maybe can shed some light on how to treat it. He said he gets to do two of his patients for free and he wants to do me! He said he was really curious to what it would show. I have no idea what it entails (it's probably a blood test) or really even what it will help, but I was pretty excited. I think he's going to call me next week about it. Anyway, then apparently instead of calling me he went up to our office on the 5th floor to drop off the sheet telling me how to get off the prednisone, and a prescription for a lower dose. He's so nice, what kind of doctor does that? So I just wanted to share some good news today. Now I'm just praying that I will still feel good on a lower dose of prednisone, keep your fingers crossed!
April 2, 2011
On The Mend
Well I had my surgery on Thursday, the 31st. Here's how it all went down:April 2, 2011
On The Mend
- 6:20 am-leave Burley
- 7:10 am-register at the hospital
- 7:20 am-wait
- 7:45 am-Do a lab test to prove I'm not pregnant (even though I told them it's not a possibility)...whatever, I'm not the one paying for it. :)
- 7:50 am-wait again
- 8:00 am-go to pre-op
- 8:05 am-answer lots of questions about what meds I'm currently taking, past medical history, etc...that I already answered at the pre-op appointment a couple days before, btw....yes, I'm allergic to flagyl, yes, I had my WHOLE colon removed, etc, etc, etc. :)
- 8:15 am-change into this beautiful gown, get IV started (which happened on the first try, I was impressed!)
- 8:30 am-wait some more
- 8:45 am-Dr. comes in and we chat. He said to plan on feeling like I've got the worst cold ever for about a week.
- 8:55 am-Anesthiologist comes in, they give me my prednisone in the IV since I couldn't take any of my meds that morning, gives me some Versed (consious sedation) and I already start to fall asleep.
- 9:00 am-go to OR, by this time things are already looking a little fuzzy because of the Versed. I was also put under general anesthia once we got to the OR.
- ~10:15 am-Wake up in recovery. This was not a pleasant experience. I woke up kind of suddenly and there was a lot of noise around and it was making me really agitated. My throat was really dry and I was freezing cold. I could hear the nurses talking to me and trying to ask me questions. They told me they were doing an EKG on me and putting wires everywhere. I could see/hear the anesthiologist saying that when they put me under, my heart went into v-tach (really fast heart rate) for about a minute and he seemed a little concerned. A few minutes later he came back and said it looked fine. But I did not feel fine. I was breathing really hard and felt like I couldn't catch me breath. My head didn't really hurt, but my stomach did (go figure). I had a good nurse though and when she asked me if I was in pain, and I said yes, she asked if it was my stomach or my head. I said my stomach and she gave me morphine. I had actually started to cry a little bit, and she kept telling me to take deep breaths and not to cry because it would just make it worse. I don't know what my deal was. Usually I just come out of it really slowly and everything's fine. They also had to give me some more Versed and Ativan to calm me down. The nurse was really good at talking to me though. She told me she knows my parents and asked about my brothers and sisters. She didn't believe me when I said I have 13 nieces and nephews. I did give a little smile when she commented on what my nieces and nephews would think if they saw me now-with my wires going everywhere, gauze under my nose, ice pack on my face, hair net still on, oxygen mask on, tubes hooked up to the blankets blowing warm air on me...oh man, haha.
- ~11:15 am-Go to Same Day Surgery room (and by room I mean a little closet big enough to fit my bed and a chair). I got up and used the bathroom (I was getting IV fluids, so it was time...haha). I ate some pudding. Sipped some water. Took a pain pill. Then I was fine. My mom snapped this lovely picture of me.
- 12:30 pm-IV unhooked, receive discharge instructions about pain meds, antibiotics, changing gauze, etc, etc, etc.
- 1:00 pm-Dr. finally calls my mom to tell her everything went well. He didn't get time to go out and talk to her when I was in recovery because he needed to get to his next surgery. He said I should be breathing much better soon!
- 1:30 pm-Home Sweet Home :) Still pretty groggy/out of it the rest of the day.
- 1:45 pm-10 pm-Eat some yogurt. Sleep a lot. Take some pain pills. Get really nauseated. Take some nausea medicine. Feel much better. Sleep some more. Watch Tangled on my iPod. Eat some real food. Watch American Idol. Go to bed.
- So that was pretty much my day. It was not as bad as I thought it would be, pain wise. My mouh and teeth were numb for most of the first day and I didn't have a lot of pain. Yesterday and today the pain has been worse, but bearable. I had a little bit of a first rough night. I would get nauseated from the pain meds, and woke up once throwing up, which made my nose start bleeding a bunch. I learned to eat something if I'm going to take a pain pill. I had stocked up beforehand on things like Ensure, yogurt, pudding, applesauce, and soup, which has helped a lot. Last night was much better and I slept much better. I think the worse thing though has been not being able to breath out of my nose. I only had to wear the gauze until the next morning because it had stopped (actively) bleeding by then, but they put some spints up there to hold everything in place, which are making it so I feel super congested and can't breath. I know there's also still a bunch of dried blood and grossness blocking my way to that wonderful air through my nose too-the Dr. will clean that out too. I have an appointment on Thursday to get the splints removed, but he said I could call him if I get tired of them before then and we could do it Tuesday or Wednesday. I just might take him up on that. Thursday night my awesome friend Jamie stopped by. She randomly took some frosting off her cupcake and wiped it on her face so I would not be the only one with a mustache. I about died. It was hilarious. She. Is. Awesome.
So I am doing well. It went faster and I was home sooner than I expected. Besides the experience of waking up, it was not as bad as I expected. I was really nervous for some reason. I hope it starts to feel a little better tomorrow though so I can go back to work Monday. I don't have much energy and the pain meds make me super sleepy. I have a sore throat from breathing with my mouth open and from blood draining down my throat (I know, gross!), and it hurts to talk too much. All in all, though, I think everything went well and I should feel much better soon!April 20, 2011
Patience Is A Virtue
I have been trying to be more patient lately but I'm not sure how successful I have been. It seems like I'm always waiting for something...waiting 4 MORE MONTHS for Kyler to get home...waiting 31 more days until we FINALLY move to the new hospital...waiting ONE MORE WEEK until I see a Dr. at the University of Utah...waiting to feel better.
My life for the most part is great and I don't want to complain. I have a great family and awesome friends. I have a great job that I love and have great people to work with every day who have become really good friends as well. I have good doctors and good health insurance. Watching General Conferance a couple weeks ago really made my heart full of gratitude for the wonderful blessings in my life. I realized that the Lord has blessed me with so many great things, that I should be willing to be a little more patient for the extra things I want. I enjoyed all the talks in conferance...and I was proud of the fact that I stayed awake through most of them even though I had just had surgery and was hopped up on pain pills. :) Elder Kent F. Richards of the Seventy said in his talk on pain that, "Healing blessings come in many ways, each suited to our individual needs. As known to Him who loves us best, sometimes a healing cures our illness or lifts our burden, but sometimes we are healed by being given strength or understanding or patience to bear the burdens placed upon us." I was given a blessing by my branch president about a month ago one weekend when I was super sick. He basically said a very similar thing...that I would start feeling better eventually. I just need to be patient and endure whatever comes my way. Another talk I enjoyed was by Paul V. Johnson of the Seventy. He talked about trials and quoted Elder Orson F. Whitney saying, "No pain that we suffer, no trial that we experience is wasted. … All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.” I really believe that to be true.
So here I am trying to be patient...I actually have recovered from my surgery really well. I had a couple miserable days (day 3 and 4 were the worst) and I didn't go back to work until Tuesday (not Monday like I had planned), but it was not NEARLY as bad as I expected. I got the splints taken out a day early because I had a night where I was waking up every hour with blood gushing out my nose and I couldn't take it anymore. I called the nurse and she said to come right in. I was so excited (especially since I had called the day before to move my appointment from Thursday to Tuesday like the Dr. told me I could do and the receptionist rudely told me that the spints HAVE to stay in a week, and they didn't have any openings anyway...psh.) Anyway, life was much better after that and I can really tell that I can breath much better. I think it will take some time to really tell if it's made a difference in how I feel, but I can already tell it was worth it. I've seen Dr. Mayes (the ENT who did the surgery) at the hospital a couple times since then and he always says, "Hey Jill! How ya doin'? Breathing good?" It's kind of funny but I love telling him that yes, I'm breathing good. :)
Also on the plus side I got my vitamin D level checked again and it is back in the normal range, so I just have to take one vitamin D pill a day now instead of two. I have an appointment with the Rheumatologist in a couple of weeks to see how the medication is working for that, and I think it's going pretty good. I haven't been having much trouble with my joints.
My stomach has been about the same. Every time I decrease my prednisone dose, I get sick again. Dr. Smith has been great, even though I'm starting to feel like I'm probably the bain of his existance. :) He finally did say that he wants me to see someone at the University of Utah to get another opinion because he can't figure out why I'm still having so much trouble. I have an appointment Thursday the 28th...wish me luck. I increased my prednisone dose again this last Thursday back to 40 mg but actually haven't started to feel much better. Sunday was horrible. I was ok in the morning when I went to church. I came home and took like a 2 hour nap, and when I woke up I did not feel so good and it just kept getting worse and worse...until I was curled up in a ball in my bed bawling because it hurt so bad. I had taken imodium and percocet and neither seemed to do anything for a LONG time. Finally about 8:00 I decided I was going to live and was able to get up for awhile. I went to bed later and the next morning I miraculously made it work. Today I talked to Dr. Smith again who told me to start taking 80 mg of prednisone, which I was not excited about. I can tell that it is making my face poofy. It has also made me a little bit grumpy at times and affects how I sleep. But hopefully it will help and I can start decreasing it again in 3 days. He also gave my an antibiotic. Dr. Smith told me if it doesn't help to call him this weekend because he's on call. He's so nice. I'm just trying to wait patiently for one more week and praying I get some answers. It's weird that it has all of a sudden decided to get really bad the last few months. Before if I got pouchitis, it wasn't very bad and I could take an antibiotic and it would go away. Now it gets really bad and doesn't go away...ahhh! Anyway, I guess there was a little complaining in there, so sorry about that. :) I guess life goes on and I can't just put my life on hold because I have a stomach ache. I just need to be patient...
p.s. Sorry no pictures in such a long post.
May 1, 2011
On The Right Track
Well I had my appointment at the University of Utah on Thursday. It went really well and I am feeling a lot better about things. We met with a nurse practitioner who spent probably an hour with us. She had all my records that Dr. Smith had faxed her. We talked about a lot of things. She said that about 40% of j-pouches fail, so that it's actually not that uncommon to be having so much trouble. She said some people end up going back to an ostomy eventually, but she said there are lots of things we haven't tried and that we are way off from that. She also said that she's not so sure that pouchitis is my main problem. Because of where my pain is located a lot of the time, something else could be going on. We are going to do a bunch of tests. I didn't do them there because of insurance purposes (they are not in my network, plus if I do it at St. Luke's I get a 25% employee discount). First she ordered a blood test for Celiac's disease. (I'm crossing my fingers it's not that). She said about 10% of people with irritable bowel diseases get Celiac. She also ordered some kind of breath test that detects bacterial overgrowth in the small intestine. When she felt my stomach she said she could tell there was inflammation there. Then on Friday she called me and said she's had a chance to look over my records more and wants me to do a HIDA scan (to check the gallbladder) and a couple other lab tests. She said it might feel like she's "throwing the kitchen sink at me" but I think it's good we're doing all this. She threw out a couple other things too like doing a pill camera to see everything, but I think we are just going to start with these other things first.
We also talked about a lot of different medications we can try. She's having me try a different probiotic than the one I take now called VSL #3. I've thought about trying it before and once Dr. Smith even gave me a prescription for it, but I didn't fill it because he didn't write it for the double strength dose, which is what the insurance pays for, and I never asked him about it again. There is actually strong research that it helps pouchitis. She gave me a different antibiotic to try and another medicine that's similar to one I already take but supposed to be better. We also talked about doing a low dose of an antibiotic (like Cipro) all the time, Entocort (a steroid like Prednisone but it's not absorbed so doesn't have all the side effects-I took it a long time ago before I had surgery), and she talked a lot about Remicaide. Remicaide is a drug that's only available in an IV, you get it about every 6 weeks. It's used a lot for Crohn's disease and Rheumatoid Arthritis. Dr. Smith has debated using it too but I think he was saving it as a last resort. She was kind of surprised I hadn't ever tried it. She also said it might be good for me because of the arthritis, we could kill two birds with one stone. But I think she wanted some of these tests back before we decided anything else.
A couple weeks ago I also did that blood test that Dr. Smith let me do for free. It didn't really show much except that I might be worse in 30 years...haha. He said that everything looked pretty normal though. The NP looked at it and said that that test is usually for Crohn's disease and usually there's a test they do before that to check for Crohn's disease (unfortunately sometimes people are diagnosed with Ulcerative Colitis when they really have Crohn's). So she is also checking into that to see if that got done or if we need to do that one too.
I had been taking 80 mg of prednisone, then 60, and started taking 40 that day. She told me to stay at 40 for now until we find out some things. She said she doesn't use prednisone very much anymore because there are so many other options that work and aren't as bad for you, so hopefully some of this other stuff will help and I can get off it soon. I'm tired of my poofy face and not sleeping well. :( All in all I think we are on the right track and I feel a lot less frustrated and hopeful!
May 21, 2011
3 Good Things
1. All my tests have come back normal so far (no Celiac, gallbladder problems, etc). I'm going back to Utah in June to do a couple that they don't do here.
2. I'm down to 20 mg of prednisone. In two days it will be 10 mg. I told the dr. I'm going off of it no matter how I feel.
3. I bought a car!! Yes, it's another Neon. I didn't go looking for a Neon, I just found it and it was a good deal. I did not want to go another summer with no air conditioning, so it was time to part with my dear old friend. I will miss the old one...we have been together for 8 1/2 years, but I am really really excited about my new one!
Old Car
New Car!6/12/2011
Salt Lake
On Friday I had another appointment in Salt Lake. Chris came with me and sat at the hospital wth me for 3 hours. First I saw the Nurse Practitioner again that I saw last time. She was really excited that I gained about 4 pounds since last time I saw her. I'm finally almost back up to my normal weight. She said she could tell that I feel better than I did, and that I have more color in my face. She said she wishes she could take the credit for me feeling better, but that that's probably not it. She said that prednisone must not be my friend like it is for other people, which kind of made me laugh. She told me for now to keep doing what I'm doing. She said to just keep in touch with her and let her know how I'm doing periodically. If I start to have problems, there are always other things that we haven't tried. I have another appointment in 3 months.
After that I had the breath test for bacterial overgrowth. She still wanted me to do it. I just had to drink some not-so-good-tasting-stuff and blow into a bag every 15 minues for about an hour and a half. They said that everything was normal, so that's good. There was another lab test I was also planning on doing there, but she said since I'm feeling better, we can hold off on it for now.
Once we were all done at the hospital, we wanted to have some fun. We went to the Hogle Zoo. I haven't been there since I was about 12. The weather was perfect and it was really fun. I couldn't believe how many people were there though. My favorite part was the giraffes.
After the zoo we went and walked around Temple Square. We took a tour of the Conference Center, which I have done a couple times before, but every time is different and I learn new things. It was really fun and a really good trip. We went home the same day. 
November 9, 2011
Gratitude
Well with Thanksgiving coming up I have been thinking a lot about gratitude and being thankful. I mentioned in my last post that I haven't been feeling well lately, and I have to admit that I haven't been as grateful to my Heavenly Father for everything that I do have as I should be.
I have been praying for so many things lately: strength to go to work every day, praying that I can sleep well, feel better, and especially for emotional strength to be happy and not get so discouraged. I am grateful for these words to help me. Chris and I have also been trying to make decisions regarding work and school for him. I am just so thankful that we do not have to do it alone.
I am thankful for my doctors who are so concerned about me. Last week I had an appointment at the University of Utah with the nurse practitioner there that I've seen a couple times. Chris was able to go with me. We talked about basically the same things we've talked about before. She wants me to continue to do what Dr. Smith is having me do as far as prednisone. He's having me take 30 mg right now, and then go down to 25, and then jump down to 5 and start taking another steroid called Entocort that has about 1/10th the steroid in it that prednisone does. That way I can get off of it faster, which I will be really excited about. I hate that it makes me not sleep well and irritated. I am also taking an antibiotic right now that I think is helping. I've only tried it once before and it was only for a few days, so we are trying it for longer this time. The NP at the U of U said if this doesn't work then my next option is probably Remicaid, the medication that is only available in an IV. I would have to get it about every 6-8 weeks. It's something that I've talked about with doctors for 6 years and it's always been the last resort, but now it seems it is getting closer. She also is having me go back in December to have a sigmoidoscopy there in Utah. I had one in February here in Twin when I was in the hospital which didn't show much, but she wants to check again. She wants to make sure that they look above my pouch to make sure that there is not active ulcerative colitis still going on. Dr. Smith said he looked there but that he wants a second opinion. This sounds bad, but she's hoping that by December when I've tapered off the prednisone again I will get sick, and then the test will show something's wrong, and I do too. It's frustrating to feel so crummy when everything looks great. The NP in Utah brought up my weight and said that I looked a lot skinnier than last time she saw me (remember last time she was so proud that I had gained wt)! I admitted that yes, I have had a poor appetite and lost weight again. I have missed a lot of work lately too and have hardly any PTO hours (paid time off) left. That's not good. My boss is very understanding though so I am really lucky. I have felt better the past 3-4 days than I have since before I got married, so that's a good sign. I have decided that for whatever reason I just have to deal with this, so I might as well try to have a good attitude. It has been harder to deal with lately because it has just been so constant and won't get better, but I know it will eventually. Sorry if this post has too much complaining, I won't complain anymore after this. :) Just have to keep being patient, praying, and thanking the Lord for the wonderful things I do have in my life! :)
December 13, 2011
Answers..........Finally
December 13, 2011
Answers..........Finally
On December 1st I had an appointment in Salt Lake for a sigmoidoscopy. Last time we were there we scheduled it for December 14, but the nurse practitioner told me (and told Chris to make me) to call her if I got worse before then. I got really bad a couple weeks before that and ended up in the ER. I have been feeling pretty crummy and not sleeping well. The idea was that hopefully I WOULD get worse, and we could do the scope then when it was bad, so that hopefully it would show something. So after a million phone calls we finally got the appointment on the 1st. We went down Wednesday night (the 30th) to Salt Lake and saw the lights on Temple Square. Chris had never been before and it had been a long time since I had been so we thought that would be fun. We left right after work and got there around 9:00. We walked around for awhile and this is just a small part of what we saw.
The lights and Nativities were amazing and we had fun just walking around together. We stayed in a hotel in downtown SL just a few blocks from the Temple.
The next morning we had to be at the hospital at 10:15. We got there and "checked in" and then waited to register. When we registered I had them change my last name. After that we went down to endoscopy and "checked in" again, and waited some more. Finally we went into a little room and I answered a bunch of questions that I'm sure they should have already known (allergies, current medications, etc, etc, etc). I changed into this lovely gown and got an IV started and we waited again. We watched the news about the horrible wind storms happening in Utah while we waited. After about 15 minutes they came and got me. Chris went to the cafeteria to get some food since he was starving. Since I couldn't eat that morning, he didn't eat. :) When I got back there, everyone was pretty confused because my name on my bracelet was different than the name on the board. Finally one of the nurses told me why they were confused and I explained that I just got married and changed my name in the system when I registered. They hooked oxygen and all kinds of monitors up. The doctor (who I had never met before) came in and talked to me for a minute. She was really nice and I liked her right away. The nursed asked me where we went on our honeymoon. I told them the Bahamas, and one of them who was giving me medication to put me to sleep, told me to just go back to the Bahamas. I laughed and that is the last thing I remember.
When I woke up 20 minutes later the first thing I asked for was Chris. They went and got him and he came back right away. I just wanted my Chris. :) I was freezing cold and he made sure I got a warm blanket. I was a little groggy but awake enough to listen and know what was going on. The dr came after a few minutes and told us what she found. She said that my pouch looked good except for a large ulcer and a small ulcer in it. Up above the pouch, in the small intestine she found more ulcers. She told us that to her, it looked like Crohn's disease. We knew this was a possibility but it was a little weird that she was actually saying it. I have been tested for it before and it has been negative. Anyway, she told us she took some biopsies that would tell us for sure, and she wanted me to stop by the lab and get blood drawn before we left to help confirm it. She also said I have something called cuffitis. I have heard of it, and I think even Dr. Smith has mentioned it, but I never really understood what it was or how they knew you had it. She explained that when they remove the colon, they have to leave a tiny part (like a centimeter or two) to connect everything to the rectum. That is called the cuff and it can technically still have ulcerative colitis, and get inflamed and cause all the same wonderful symptoms that you had before. Makes sense.
After I was a little more awake we got to go. We went to the lab and waited some more. After I was done, I was STARVING so we went to the cafeteria so I could get some food. I ate a big piece of pizza and a slice of cheesecake. Chris was so proud of me. :) I have lost about 10# in the last 2 months, so he gets really happy when I want to eat. :) By the time we left it was a little after 1:00, so altogether we were only there about 3 hours. We drove straight home-well Chris drove and I slept most of the way. He said he saw 6 semi trucks tipped over on the side of the road, and several more just parked on the side of the freeway because of the wind. Crazy. We stopped and saw my mom for just a few minutes and were home by 5:30 or so. It was a long day.
The dr had said that it would take about a week for the biopsies to come back and that they would call me when they got the results. So I waited a week and when I didn't here anything last Thursday, I called and left a message Friday morning. Keisa Lynch, the NP called me back about an hour later. She said that the dr thought that someone had already called me, so she apologized. She told me that it is fore sure Crohn's disease. I wasn't too surprised. For a long time it was my greatest fear that I would find out that I really had Crohn's, but now it is just relieving to know what is wrong. For so long I've been told it's just pouchitis, but then they would say my pouch looks fine. I'm sure that some of the times that has been the problem, but I think back in February when I was in the hospital, it was Crohn's disease further up where they couldn't see, because that's where my pain was. Anyway, I asked the NP if she thought that it had been Crohn's all along, and she said unfortunately, yes. She said that it gets misdiagnosed a lot, but that the testing for it has improved a lot over the last 5 years. She said that it is a bummer that I have already had surgery and had my colon removed, but I almost think I would have had to do that even if they knew. The surgeon told my mom that I had one diseased colon and that it never would have gotten better.
The NP told me that the dr wants me to start a medication called Cimvia. It is a shot that I would give myself once a month. It does the same thing as Remicade (the medication in an IV), but she said this would be better because Remicade is not good to take if you want to have kids. The Cimvia should also help the Rheaumatoid Arthritis, which I have also been having a lot of trouble with the last couple weeks since it has gotten colder. I'm excited to start it and I think it will help. I have been talking with drs for the past 5 years about starting something like Remicade, but at the time surgery felt like the thing to do. This group of medications is more successful for Crohn's than it is for UC, so I didn't want to try it, and then after a couple months find out it wasn't helping me and go through another school year like the last 2 that I had had. I just wanted to take care of business. :) She also told me to let her know if I lose any more weight. She was not very happy to find out that I have lost more weight since the last time she saw me. I know how important it is to gain some weight, or at least not to lose anymore (I am a dietitian) but it has been a big challenge lately. I think once I start to feel better though, I will be able to start gaining weight.
Well I really feel like we are on the right track now. I am feeling much more optimistic and I think we can get things under control now. I am so thankful for my wonderful husband. He takes such good care of me. Also so thankful for the prayers and fasting of our family. I have wonderful people in my life and much to be grateful for.
Well sorry for the marathon post but there is an update. Mostly for myself since I am terrible at keeping a journal. I like to go back and read how I was feeling at certain times, so everyone who reads this gets to too. :)
No comments:
Post a Comment