Pregnancy!

Pregnancy with an ostomy has been an exciting adventure. I was told that I would have a perfectly normal pregnancy and nothing would be different due to my ostomy. I am not sure why I still listen to what doctors tell me, I think I am just not ready to give up the hope that they might actually tell me something right. At 2 weeks pregnant I got erythema nodosum accompanied by arthritis. Thankfully the nodosum went away, unfortunately the arthritis hasn't. If I recall correctly (which I do because I got this lecture more times than I can count) my doctor told me "If you go into pregnancy healthy and with your disease under control you will remain that way through out pregnancy". Ha! I went into pregnancy feeling fantastic and with technically very little disease still left in my body and here I am having all sorts of problems. My GI told me that I really was in the worst situation, my disease was uncontrollable so I had my colon removed, yet it still is giving me problems elsewhere. Most people don't have these kinds of problems after surgery he said. Where have I heard that before? So the arthritis is an extra-intestinal display of the ulcerative colitis, inflammation running rampant through my entire body instead of just my colon. Yeah for me! The most common treatment is steroids (I promised myself after getting off them last time that I would never go back on), I was a little hesitant to go back on because not only do I hate steroids but I worried about taking them in pregnancy. So I waited and limped around until I was almost out of my first trimester before starting. Both my OB and my GI told me it was perfectly safe to take before then but I was holding on to some hope that maybe this would go away on it's own. After being on steroids for over a month and not feeling any better I decided to quit taking them because I knew the doctor would want to up my dose and there was no way I was taking more, even though I was on a low dose to begin with. After quitting the steroids I realized that they were doing more for me than I ever knew, I went down hill fast, I could hardly get out of bed, get myself dressed, or walk across the room. After some intense praying I realized that the Lord knew more about babies and medication than what I did and I was just going to have to trust him on this one. So I went back to the doctor and upped the steroids. I am now back to my regular limping and aching which I never thought I would be grateful for. I have lost mobility in my left elbow so I am pretty sure I am looking at some PT in the future, but we are getting through it and I know I could function at this level for the next few months until the baby gets here. I would like to make a special shout out to Todd and tylenol, I don't know how I would function without Todd to help me get my shirts off and rub my ankles every night and there is no way I would sleep without the tylenol. Thank you thank you thank you. Besides the arthritis we had another little adventure last week. Anna and I were out christmas shopping and getting things ready for christmas and all was going well but I just hadn't felt right all day. I can't say that I felt bad or that I had any pain, I just didn't feel right. Well I get home and find out that my stoma has prolapsed (come out of my body 5-6in). This has never happened and I didn't really know if it was normal or not but something inside my brain was screaming (AHHHHHHH, THIS IS BAD!!). Todd was working in the ER and didn't have his phone on, so i just decided to call me GI and ask them what was going on. I left a message at 2pm with the nurse and got no response (in fact I didn't get a response until mid-morning the next day, I was more than displeased but will leave that ranting for another post). By the time Todd got home I was a complete mess, my stomach had started to hurt and cramp and I had that pit one gets in their gut when all hell is about to break loose. Todd was VERY concerned when he got home and immediately made me change my pouch so we could really look at what was going on. This was actually a really good thing because my stoma hadn't only come out but it had swelled up alot and so my pouch was actually "strangling" it, decreaseing the blood flow. The stoma was different colors and bleeding and not looking very good, Todd was ready to take a trip to the ER but we had a pack meeting that night and I really wanted to wait until after that (he never puts work into pack meetings like I do, I wasn't canceling that thing for a million dollars!). We compromised with him calling the surgeon that he rotated with a few months back and is good friends with to ask his opinion. That's when we found out that this was considered an emergency surgery situation and would most definitely have to be fixed with surgery, yeah for me! The fact that I was pregnant did complicate things because amazingly enough general anaesthesia really isn't good for developing babies, but there wasn't anyway I could wait until the baby was born to have this fixed. So, he asked Todd all sorts of questions about the color changes and bleeding and said that if it got any worse during the night to take me to the ER and he would operate tonight, otherwise we were to call him first thing in the morning and he or one of his partners would get me in for surgery tomorrow. I was supposed to go out of town the next day so this was really cramping my style but it seemed there was nothing else to do. So, I called my mom, she drove out and we went to pack meeting. Then, the most amazing thing happened, sometime between 2am and 4am the next morning my stoma went back in! It was a little swollen still but other than that it looked normal. I can't tell you the relief I felt, but also a little fear because now I REALLY didn't know what to do or what was going on. Todd called the surgeon and he was thrilled that is fixed it's self but we set up an appointment to see him in his office the next day anyway. Oh, Todd also saw my OB that day and filled him in and the OB said to avoid surgery unless I was on the verge of death....great. So we go in to see the surgeon and he tells us how strange this is that this happened to me, usually IF it is going to happen it happens to old, obese people who have had their ostomies for years and years. Obviously I am not old, I am pregnant but I haven't gained THAT much weight, and my ostomy is less than a year old, he said that there was no explanation as to why is prolapsed...I am just lucky. If I had a quarter for all the "luck" I have had I would be a millionaire. I really and truly am lucky that my stoma fixed itself without surgery though, the doctor says that it will most definitely happen again and it will have to be fixed surgically at some point but the goal is to get through the pregnancy first. I am just hoping that if it fixed itself this time than it will fix itself next time, if I can't wait until the baby is born to have the surgery the farther along I get the better. I feel like a time bomb waiting to go off, I don't know when its going to happen or where, if I go out of town I have to pack accordingly because my normal clothes don't fit when my guts are hanging out of my body, the whole thing just makes me a little nervous. But, it has been 2 weeks since it happened and I have been just fine so I figure that's a good sign. Wow, all this adventure and I am not quite 19 weeks, I don't know if I am up for much more adventure during the next 20!

Good News

The title is misleading, I actually have GREAT news! My erethyma nodosum has almost completely cleared up....on its own! Even though I had the perscription for the prednisone I was really struggling with the thought of having to take it again. So I decided that I was going to pray my guts out (I guess I technically did that already) and hope that Heavenly Father would have it clear up on its own. My faith wasn't lacking that he could make it go away, just that he would, if there is one thing I have learned from all this it's that you might as well accept the Lord's will in all things because there is really nothing else to do. Anyway, I decided not to take the steriods unless the pain got to be totally out of control, and low and behold it has cleared up on its own! Although the nodules don't look nearly as bad, to a regular person I still look like I have bruises all over my legs, but I don't have the pain or the inflammation and they nodules are slowly healing. This has been such a wonderful blessing and I am indeed grateful. I am still struggling a bit with arthritis, especially in my right ankle (the worse of the two legs) but for the most part everything has gone away and I am feeling much better. When the swelling finally went down in my legs I couldn't believe how skinny they were! Not that I am super skinny or anything it's just that they had been so swollen for a few weeks and I had forgotten what they normally looked like. I started going around showing all of my friends how skinny my legs were and then realized I must look like an idiot so quickly put a stop to that! Thanks for all your prayers, I know that it has helped!

Legs

I have to admit that I have always been a bit proud of my legs, I feel that they are one of my best features. Unfortunately the Lord has decided to humble me yet again (I am REALLY prideful) and has stricken my legs with a horrible skin condition called erythema nodosum. It is a side effect of my ulcerative colitis, my GI told me that I really have the worst luck because most people don't have to worry about this after having the colon removed, yeah for me! So what has happened is the inflammation effecting my guts has moved to my legs and caused these nodules to form, when they first started coming they just looked like little bruises that hurt like crazy, that's what I thought they were until I started getting them all over both of the lower portions of my legs. The one on my right leg is the worst and is almost 4in in diameter. So besides looking like I have been beat up the problem with this skin condition is that the nodes hurt really bad and after being on my feet all day I can just feel the heat coming from my legs, plus you can't tell too much in these pictures by my ankles swell up to atleast twice their regular size, I feel like an elephant! Plus, it also causes arthritis, so usually my joints take turns hurting which is good because it doesn't totally leave me unable to do things like it would if they hurt all at once. Today is my ankles, elbows, and left wrist, but it has effected my shoulders, SI joint, and especially my knees. My knees don't hurt to much anymore though, only if I am trying to stand up or sit down. So all in all the arthritis is much worse than anything else and somedays I can hardly walk. I do feel fortunate though because the GI also said that if I had a colon it would be totally inflamed now, well since my colon was never not inflamed I count this as a blessing because I have no doubt it would have gotten even worse. So what do we do for this? Steroids, they are the answer to everything it seems like. I just hope it won't take to high of a dose before the inflammation goes away because if this is anything like my colon than I am going to be on 40mg before I even begin to get relief, and we all know how I love steroids!
So the pictures really don't do it justice, it looks ten times worse than this in real life, I am just so happy that the weather is getting cooler so that I can wear pants and long skirts, there is no way I am walking around showing people my red/purple bruises and my elephant ankles!

I love Prednisone

So this is what I have been telling myself lately, I was just about to get off my prednisone when I had another bowel obstruction and was able to stay in the hospital for another lovely few days. The doctors decided that I was having bowel obstructions because I am steriod dependent, since I was almost off my prednisone my body started freaking out and shut my bowels down. Although they have never heard of this happening before they are pretty sure that is what my problem is...nice. To be perfectly honest though I would rather them make something crazy up like this than tell me they have no idea whats wrong with me and leave it with that, so lets stick with the steroid dependent theory. Anyway, so I am back up on my steroids and tapering ever so slowly, it will be months before I am off. At this point it seems I will never get to have another baby, but I know that's not true, Anna is just going to be much older than what I had hoped for by the time the next baby arrives, and I am sure that in the end I will understand why I was blesssed with these marvelous experiences....I hope. I just feel like my little bucket of faith is about empty and I can't do this anymore, so I am really trying to get mysef back on track and in a place that I need to be. Feel free to give me lectures on how everything will be ok and the Lord has a plan, every little reminder helps!

Prednisone

Much to my dismay I am back on Prednisone (steroids). I had been on prednisone for several months and was just hitting my "1 month steroid free" mark when my Dr.'s put me back on. My remaining rectum is not doing so well, actually it is horrible. My GI doctor wants me to get it removed but there is no way that is happening. I am not physically or emotionally ready for another surgery, not to mention the fact that we are moving in less than 2 months. Todd and I have really thought and prayed about it and I think everything will be ok, I am going to take this round of steriods and then see what happens, hopefully my rectum will just heal up. Anyway, so yes I am on steriods and so I will either be getting very moody here in a couple of days, or I will be getting a fat face...hopefully not both. Either way, I would apprectiate any comments toward the fatness of my face to be kept to ones self, I am already paranoid about it and when people come up and tell me how horrible I look (which has happened more than once) it really leaves me a basket case. And if you tell me something normal like "I fed my dog this morning" and I bust into tears, just walk away knowing that I am a nut case on drugs and that it will pass, don't try to comfort me, it will just make it worse. Thanks everyone for your help and support!!

Sick again

I am still out of the hospital and as far as my innards go I am doing quite well, unfortunately I have been stricken with regular person stuff. Saturday I came down with a urinary tract infection, Monday I went to my GI and was told I still have active ulcerative colitis in my rectum and the small part of my colon that is left, so my blood levels are sky high and I need to be treated. Then yesterday I got the flu, sorry to all of you I spoke with Tuesday night, I hope I didn't get you sick. So this really hasn't been my week, but I guess it is comforting to realize that 2 out of the 3 illnesses are easily gotten over. I just feel blessed to still have family in town that can watch Anna so that I can confine myself to my bed.

So about the 3rd problem, my little bit of leftover colon that is causing me big problems. I have the little bit left so that sometime in the future I can get a J-pouch if I want to. This part is still infected with ulcerative colitis and I was assured that since nothing is going through that part of my body it would heal and not cause any problems...I should have known better. So we are treating it and I haven't gotten better yet but I am not losing hope, I think it will take time but things will heal. That's what I keep telling myself anyway because if it doesn't heal I will have to get it all removed and that will kill the possibility of having a J-pouch, which wouldn't be the end of the world, but I like to have open options. Only time will tell.

03-05-08...Where did February go?

OK so I know I have failed on the whole posting thing, I just haven't felt like blogging. I just realized that I totally missed the month of February from being in the hospital, it was a cold one though so I guess that's not that big of a deal.
Well I am out of the hospital again, for the 4th time in a month. This past stay my surgeon decided to operate again and see if he could figure out what is going on with my body. Unfortunately he couldn't. He said he pulled out my entire small intestine and looked at it and it was absolutely beautiful, which made him happy but frustrated all at the same time because now he has no idea what is wrong with me. I met with my GI's on Monday and gave them the update as to what was going on and they said that it is rare but occasionally they have patients that just take a long time to adjust to the ileostomy and the surgery, they have never had one quite as bad as me but they feel confident that is all that is the matter. In time my body will adjust and everything will work normally, well that sounds great but what am I supposed to do until then?!?! They informed me my only job was to gain weight (and stay out of the hospital). I have lost 20lbs in the past few weeks, besides being skin and bones my hormones are all off because of how much weight I have lost. I have been having these hot flashes like crazy, I will be sitting minding my own business and the next thing I know I am drenched in sweat! It is absolutely horrible, I feel for any woman going through menopause and dread the thought that someday I will have to "make the change". So I am recovering from my surgery ok, it frustrating to be recovering all over again but I am blessed to have so much help to make it easier. I still have to be careful with how much I eat and really try to listen to my body, I have thrown up the past couple of nights, but even so I can tell I am getting stronger and things are healing. I still am so glad I had the surgery, I just wish I could be back to normal. But, spring will come and I know everything will someday be pleasant again!