Saturday, December 27, 2008


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!

Tuesday, October 7, 2008

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!

Tuesday, September 23, 2008


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!

Thursday, May 8, 2008

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!

Friday, April 4, 2008


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!!

Thursday, March 13, 2008

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.

Wednesday, March 5, 2008

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!

Wednesday, February 27, 2008

Quick Update

I know that I haven't been very good at posting lately so let me just sum things up quick. I finally got to come home Tueday night, after spending 8 days in the hosptial. I was happy to be home because Anna's birthday was on Thursday and it was important to me to be home for her party. Anyway, that went well and then Friday night the same old story started in, so back to the hospital we go, after some tests and all that I am headed back into surgery today and 1pm. Although it is gong to be kinda like starting all over, I am glad to be going in and getting things fixed. Hopefully I won't have any more problems after this. We will know more after the surgery, so stay tuned!

Saturday, February 16, 2008

Set Back

So I wrote this post several days ago but never got it published, now that I am publishing it I realize that I greatly abused the use of exclamation marks, sorry!

I know that alot of you think that I am some sort of super positive person but I think after this post your eyes will be opened to what a whiner I can be. So I am back in the hospital and feeling a little frustrated and discouraged. Sunday night I began to not feel good, the same indigestion/bloated feeling I had the last time I had a bowel obstruction. I immediately began to drink water, I knew that I had already drunk plenty that day, but I didn't know what else to do so I just started drinking. Well to make a long story short the beautiful labor pains came back and Monday afternoon I found myself again being admitted to Mercy. I was less than pleased. So this time we are blaming the pain on scar tissue. I guess scar tissue got on my small intestines and made them less flexible, causing a bowel obstruction. This is the very uneducated explaination because I really don't get it myself. So it has been 5 days and nothing is happening! I am still on pain medicine and just waiting things out, I feel like I am never going to get out of here. I was in and out so quick with my last bowel obstrucion I figured this would be the same way, well I thought wrong! The Dr. is having a PICC line put in today, although I read about PICC lines I really can't explain what it is except to say that it is the mother of IV's. With a PICC line they can give me TPN (liquid food) to buy me another week of waiting before having to do surgery. I love my life! So hopefully things will start working soon and I can get out of here, I just miss my baby so much! Anway, thats the update.

Friday, February 8, 2008

Slowly but Surely

This is how I am healing, slowly but surely. I know that I am 100% better now than what I was 2 weeks ago, but I am feeling really impatient to be totally back to normal. Although at this point nothing is really painful (I haven't been on pain medicine since I have been home) my incision is still really sore, especially by the end of the day.

My mom left today after being here for 2 weeks, there is no way we could have done this without her. When preparing for this surgery I really didn't think that I would need the full 2 weeks to recover, ha! If she would have volunteered to stay another week I would have agreed in an instant. Although I am now able to lift Anna I can't lift her alot and I get tired really easy, I rely on my nap every afternoon to keep me going. I am glad that besides mom work, which is alot of work, I am not having to return to a 40 hour a week job. So I guess what I am trying to say is I would encourage people to expect at least a full 2 weeks for recovery when having this surgery.

Monday, February 4, 2008


So I finally got out of the hospital last Tuesday. I was suppose to come home Monday but when they gave me solid food it didn't settle too well. I have to admit that I might have overdone it just a smidge for having just gotten out of surgery, but I was hungry! So when the doctor told me to go ahead and eat what I wanted for lunch, that is what I did. I had a hamburger, french fries, macaroni and cheese, potato salad, chips and salsa, and a piece of brownie cake. Take my example and learn from it, when eating solids for the first time start light! So I had to stay for an extra day and wait for my small intestines to get it together. Coming home was great, I was pretty sore and tired but all and all doing well. Now for the home....again part. After getting home I started to not sleep very well, I was having stomach cramps and indigestion type problems, but it only happened at night so I didn't think much about it. However, Saturday I woke up feeling like my stomach was about to explode. I really thought I had gas and so settled in on the couch, confident that it would evetually subside. It wasn't very long however before my gas cramps turned into top notch labor pains, I was expecting to deliver a 10lb baby any minute. I just stayed in my fetal position and breathed my way through each one until Todd came home (he was helping someone move) and immediately called a personal friend of ours who also happens to be a surgeon. Thankfully our friend was generous enough to come over and check me out before advising me to get an abdominal x-ray to make sure I didn't have an obstruction in my small intestine. Well I was pretty determined that I didn't want to go back to the hospital so we went to a quick care clinic for the x-ray. After waiting a couple of hours and watching all these seemingly perfectly healthy people get called back, all the while squeezing Todd's hand and concentrating on my breathing during my "contractions" it was finally my turn. I have to say that through this whole affair the Lord did have mercy on me, as soon as they showed me back to the room I immediately started to throw up, I was so grateful that I had a trash can to throw up into in private, instead of being out in the lobby and throwing up everywhere. By this point I could hardly walk so I would never had made it to the bathroom had I been in the waiting room, it would have been super embarrassing. Anyway, I got my x-ray and did in fact have an obstruction and a white blood cell count of 23,000 (I guess normal is 5-10,000, so on to the hospital we go. By this point it was 4pm and I had been in severe pain for the past 8 hours, I didn't care what happened I just wanted to be medicated. Todd dropped my off in front of the ER, I stumbled in and practically laid myself on the counter begging for medication. I think the nurses must have thought I was nuts because I know I wasn't making sense, I could hardly think, but they were very kind trying to figure out who I was until Todd got there to explain everything. They immediately admitted me and it wasn't long before I was happily medicated and floating somewhere between la la land and reality. It was blessed. 10 hours of excruciating pain, that is a long time, at least when you are in labor you are getting something out of all that work, I only got sore muscles. The sad thing is it would have been longer had our friend not told us to go. I don't know why I am so stubborn but I just hate going to the doctor, I would rather tough it out. Stupid. Anyway, I was in the hospital for just over 24 hours, I got home about 10 o'clock last night feeling much better! Most obstructions like mine will resolve themselves with time and plenty of fluids, but sometimes the Dr. will have to go in and remove it, thankfully I didn't have that experience. You are probably all wondering why this happened, sadly enough they tell me it's due to dehydration, who would have thunk it. I had heard that dehydration can be an issue after having this surgery because I no longer have a colon to absorbe water so have to drink a lot more; but I thought I would just have the normal dehydration signs, fatigue, dizziness, headache, I didn't realize that my entire small bowel would shut down. People should be more specific when warning about dehydration and exactly what to look for. I guess my first sign came those few nights after getting home when I started having stomach cramps and indegestion. So my good husband has threatened me within an inch of my life if I don't drink so much water everyday. He does love me, that I don't doubt. Anyway, I know it has been a novel but now I am updated and will bopefully be better from here on out. Thanks to everyone for your support!

Saturday, January 26, 2008

Doin' Good

So everything went really well. Thusday was the hardest, I was so out of it and the morphine wasn't working very well so I was in a lot of pain. I have gotten significantly better everyday since then though so I can't complain. Today is an especially special day because after being on only ice chips for the past few days, I am being upgraded to a full liquid diet, including tomato soup! I absolutely love tomato soup and couldn't be happier. Tomorrow I get to have some more tubes removed and am VERY excited, I will be much more comfortable with these gone! Anyway, just wanted everyone to know that things went well and I am on the mend. I will be home tuesday for sure but am crossing my fingers for monday, we will see. Thanks so much for all of your prayers and phone calls.

Wednesday, January 23, 2008

Under the knife!

Tomorrow is the big day! I am feeling a little nervous but mostly excited. It's weird to think that after tomorrow my life will never be the same, but I think it will be changed for the better. Anyway, I have been on clear liquids for the past 2 days and am not feeling much like blogging, just wanted to keep everyone updated.

Sunday, January 20, 2008

Say What?

Ok, so I know that some of you may not be up on all the "colon lingo", I sure wasn't before I had this experience. So here is the very simplistic readers digest version of how things work. A total colectomy is having your entire colon removed. I will then have an ileostomy which means the doctor will take the ileum (last section of my small intestine) and bring it to the surface of the skin. An ostomy is the opening in the skin that the surgeon creates, a stoma is the end of the ileum itself. A small bag called a pouch is attached to the ostomy which catches the "grossness" (yes, that's a technical term) and which I will have to empty a few times a day. Most people get colostomy confused with ileostomy, a colostomy is different in that the opening comes from the colon, not the ileum. You can do virtually anything with an ileostomy that you could do before, swim, work, dance, play sports, travel, have kids. And supposedly the ostomy is virtually unnoticeable, even when wearing fitted clothing, we will have to see about that though.

When people find out that I am going to have an ileostomy they view it as the worst thing that could ever happen to someone, they rush around trying to find last minute cures, which I appreciate because I know they love me. However, an ileostomy is for sure not the worst thing in the world, living the way I have been living this past year has got to be worse, and that's what people don't understand. They only see the happy Sarah with no cares in the world, they don't see the Sarah that is going to the bathroom 30 times a day, who has no energy, can't eat because of the pain, and can't take care of her family because she is so sick. Although an ileostomy seems extreme, and I have no doubt that it will be an adjustment and hard times lay ahead, I also know that I will regain control of my life which is all I really want.

Thursday, January 17, 2008

A Different Breed

I don't mean this in a negative way but surgeons are for sure a different breed. I think cutting all the time does something to them, they just can't get enough. I met with my surgeon on monday and he is absolutely fantastic, I am confident in his abilities and enjoy him as a person, but he is soooo cut happy! I think he could convince a normal healthy person to have their colon out if he set his mind to it. So that is my next tip, if you talk to a surgeon before having made the decision to have surgery, realize that they are coming from a surgeons point of view. They see you have a problem, they know how to remedy the problem, end of story. Don't base your decision solely on what your surgeon has to say, although they do have a lot of good insites and knowedge to share. Todd and I actually met our surgeon a few weeks after I got out of the hospital, we went to an Inflammatory Bowel Disease support group...and were the only ones that showed up! We were feeling very supported. Anyway, this surgeon was the one directing the group that night so we got one-on-one questions and answers with him, all for free! It was great because we were able to learn about the different surgeries (I had been really confused up until that point) and the pros and cons, all with open minds since surgery wasn't yet in the gameplan. Its just great how the Lord prepares and takes care of us, although he gives us hard trials he really makes it as easy on us as possible.

Wednesday, January 16, 2008

My Personal Experience

I was diagnosed with Ulcerative Colitis in February of 2007. I had been having symptoms since September of 2006 but was extremely embarrassed to tell anyone so just lived with it hoping it would go away. After my diagnosis I was put on prednisone and Asacol, the prednisone made me VERY moody. I felt like every time my husband and I went to see my doctor we were going to marriage counseling, they were so good about reminding us that my bad mood was due to the medicine and life would get better. Finally I got off the prednisone and was given the great opportunity to start methsalamine enemas, which really weren't as bad as what I expected them to be. The enemas worked great at first, and then they slowly started losing effect. That is basically the story of my disease, all the medications worked great in the beginning but then lost effect. So I went on to steroid enemas, Azathioprene (it gave me extreme stomach pain so I had to quit), back on prednisone and then had a nice 5 day hospital visit. After I got out of the hospital I decided to start Remicade. Like everything else it worked great in the beginning, but by the 3rd infusion it was no longer having an effect on my body. By this point I was very frustrated and tired of being sick and tired. My husband and I had been waiting this whole time to expand our family, it had now been almost a year and I wasn't one step closer to being in remission than I had been in February. So I decided to try some different herbal supplements and diets, although some of the herbal supplements worked a little bit, none of them made that big of a difference, no matter how many testimonials I read. As far as diet goes, I couldn't seem to find anything that helped or hurt my UC. The week before Christmas I found myself meeting with a doctor at the Mayo Clinic and being told that if I wanted to ever hope for more kids, the colon needed to come out. That brings me to January of 2008 and facing surgery next week. I felt good about the decision when we made it, but afterwords I fell into depression and worry, I just wanted to be healthy! I have finally worked through those feelings and am now ready to get on with it. I guess that would be my advise for those of you who are thinking about having an ileostomy, schedule the surgery a couple of weeks out so that you have plenty of time to be emotionally prepared for it. I was frustrated when I couldn't get into the surgeon before the middle of January, but I now realize that it was a blessing to have so much time to think and know that this is what I want to do no matter what. I will be having a total colectomy with ileostomy, and although I don't think anyone is totally ready to live with the challenges that an ileostomy (or any health concern for that matter) brings, I feel ready, and that's good enough for me.

Monday, January 14, 2008


Welcome to my Osto-memoirs! This blog will be solely focused on my ostomy and has been created to give information and support to those who either have an ostomy of their own or are considering having an ostomy. I am very new at this whole thing (I am not having my surgery for another week) so I don't count myself any sort of expert, but I hope that as I learn and have experiences it might help one of you out there. So stay tuned!