A Touch of Thanksgiving

Good news! I am feeling better. I still have to spend a lot of time in the bathroom but it is becoming an exceptable amount. I really think the prednisone is working so I hope that means I wont have to try a glution free diet. I am still trying to stay away from milk, chili powder, and heavy tomato products however, I did have some bbq'd sauce and had no problems. I am so thankful that God has gotten me this far and I know he will continue to bless us. I know there will be other hard times to come but I will appreciate right now while I have it!

Behind As Always

The last c-diff test came back negative. The doc decided to perscribe this powder stuff to help thicken my stools up. It took forever to get it because of insurance and pharmacy issues. I finally got it last Thursday and got down about half a dose. It made me feel horrible that night. I felt like I always had to go to the bathroom. I ended up being able to see the doc on Monday. He ran several test including one for vre. It hasn't came back yet but the blood work came back showing inflamation that is most likely due to pochitis. He perscribed pednisone so maybe that will help. He is also worried about glution causing problems so he is checking for that to, I am praying it comes back negative.

Here We go again....

We got drew feeling better. As for me the vanco helped for awhile then I had to go back on Cipro. that then helped until about Friday when things started to crash once again. I got in to see the doc this morning. I am thinking it is c diff again. He did a stool sample and gave me a script for more vanco if it comes back positive. I should know more tomorrow.

I got the medicine problem settled. There is one pharmacy in Columbia who sells liquid Vanco. They had to get some kind of approval from the doc for insurance but they said if I could pay for it they would refund me what insurance did pay. It was only $135 so I'm not to worried. In other news Drew is now sick. We thought maybe it was mono because I am really tired too. We both went in and saw the nurse practitionar today. She didn't think it was mono but had us do the blood work to check. She did a flu test on Drew and it came back negative so who knows whatsoever wrong with us. We will see how we feel tomorrow.

So frustrated

Thursday I got a call mid day saying the stool sample came back negative for C-diff. I asked if I should take the vancomiacine or cipro. She didn't know so they were going to have to talk to the doc and call me back. I waited for the rest of the day and herd nothing. Drew started calling him today and on the second call they told him that I knew what I was suppose to do but he finally got the nurse to call me. The doc decided to put me on vancomiacine. After the parade we went out to Wal-mart and they didn't have any. They called every pharmacey in town and noone had it. Finally they found some at Killgores in Columbia but they only had name brand. The nice lady at wal-mart then ran it through our insurance and it was going to be around $1100. For the generic it was still going to cost $450. The sad part is if I could get myself admitted to the hospital it would be free because I have hit all max out of pocket costs. I am going to call Monday and see if there is something else I can take. I also keep thinking back in the day they told me the generic doesn't work as well but I could be wrong about that. What do you do just go ahead and pay it? I just keep thinking what if it doesn't work? Its not like they will refund my money if it doesn't work like it should. Meanwhile the diarrhea had gotten worse and I also have really bad gas. It doesn't hurt but I can feel it as it moves into my pouch and it is uncofortable. I am actually sitting up because I kept having to get up. Today is one of those days that Felix looks like a good deal....

I didn't get better over the weekend so my gi doc decided to do a stool sample yeasterday and a Sig flex today. He is pretty sure I have C-diff again. We have to wait for the stool sample to come back to make sure. If it is I have the perscription to get the right antibiotic.

I am getting really bad about posting. It is such a pain to do it from my phone but thats what I have. The antibiotic helped out a lot but the last couple days I was on it I seemed to stop responding to it. My last day taking it was Monday and now I am having problems again. I keep having to get up tonight so I decided to just stay up for awhile. Tomorrow I am going to call the doc and see if I can get back on the cipro or steroids. The good news is my leg pain is getting really better. When I did some blood test my b-12 levels came back really low. I have to do shots for 8 weeks. Maybe it will help my energy too although I have never noticed a difference when I've got them before.

Some of you may have heard I was having problems again and that is true. Tuesday night right before going to bed, I ended up having some bright red blood when I went to the bathroom. We called the doctor on call at the hospital and she told us that it was normal but if it increased to a cup of blood in one hour we needed to go in. The next day I called Dr. Safar and he decided he wanted to see me next week. The blood continued throughout the day and my frequency of using the bathroom increased. That evening I ended up going 5 times in an hour and every time there was more and more blood. We called Barnes again and they still didn't seem to concerned. The doc did tell us we might want to go to the local ER to have my blood levels checked out. Drew and I decided to head to Boone because they would have the type of doc I needed if something was wrong. By 3 am they had decided I had pouchitis and gave me a cipro (antibiotic) and a percription for 10 days worth. Thursday we called to follow up and they decided to have me come in at 1. The problem is it was already 11:20 and it takes over 2 hours to get there. It didn't really matter we still had to wait 2 hours. Basically it was a huge waist of time. All we really learned is I am probably drinking to much water and not enough salt. I am feeling better. I'm not having to make as many trips to the bathroom and the blood has decreased. The best part is I am finally able to sleep through the night! Monday I go see my gi doc in Columbia and I have an appointment with Safar for Thursday bt I don't think I will need to keep it.

My doctors appointment went well (and really Fast) today. They took my staples out, decided I should load up on more fiber, and told me if I was still going to the bathroom 20 times a day to give him a call next week and he would perscribe something to help. So I came home and ate a bowl of cereal that claims to be an excelent source of fiber with some benefiber on it and took two imodium pills. I'm still going a lot but it is a bit thicker. I really hope things start getting better soon. This being sick all the time is getting really old. My legs are hurting now too. I don't know if it is from walking more then I have been (we went to world market and target as well as walking through the hospital) or what. It feels like I need to keep moving. I'm actually out on the couch because I couldn't lay still, kept getting up to go to the bathroom, and didn't want to wake up Drew. If you have ideas either for fiber or the legs let me know.

I am starting to feel better for the most part but now I feel like I did when I had uc. My biggest problem now is my bottom hurts. It is raw from going so much, it hurts from sitting on the hard tolit seat, and it feels like I worked it out too. I am also losing weight because there isn't much I can eat and I feel better when I don't eat. Amanda is taking me to the doctor tomorrow to get my staples out.

I got to come home on Thursday and thought I was doing pretty good. I have to take pain meds every 5-6 hours and I am having really bad spikes in my pain level that I think is gas and stool goinh through the end of my digestion system . Thosr pains get closer and closer together until I canter take it and I go to the bathroom. Today has been worse for some reason. Drew brought home food from church and the smell of it made me feel sick. The pain has been worse and the meds don't seem to help as much either. Drew called the oncall surgeon and he said he couldn't do much because I wasn't throwing up or running a high temp. He did suggest that I could go into the local ER and have them check my white cell count and do a ct it it was high. We went in and they did the test and gave me some iv pain meds. My white cell count is slightly elevated but not enough to be worried or do a ct scan. However, now we have a base reading if it gets worse.

Today I have had a lot more pain but nothing like the past. I just got apple juice for breakfast but got some pudding for lunch. The doc came in this afternoon and said I could advance my diet tonight for dinner. They are also going to pull my IV and switch me to oral pain meds. The biggest news is I may get out as early as tomorrow!!

Melissa had surgery this morning, lasting less than an hour. Everything went well. The surgeon is cautiously opptunistic, but will not say it is a success for several days given Melissa's history. They say she will be in hospital 4-5 days. She would really like to be home by the weekend. The leak she had from the contrast was right at the staple they had put in last December to close the stoma so it was not a problem. Thank you God!!!!!!

Don't worry I'm not keeping anything from you, I just don't know anything from my test yet. When I first called the doc was on vacation. The second call a week and a day after my test I found out they still couldn't tell me anything because he wanted to present it at Monday meeting. So I called on Tuesday and found out they didn't get to my case so I will find out next week....thats one week before surgery. I personally think something bad showed up but maybe he just wants to make sure. Either way I wish he would call me or have someone call and tell me whats going on.

I know it has been a while but nothing has been going on and I have been feeling really well. I had to have a test done to make sure everything had been healed and Drew had a class in St. Louis so I got that done yesterday. It was a total disaster. At first they thought they were inserting contrast through my stoma which makes no since because there is no comunication between my stoma and rectom where they were checking everything. They finally got ahold of a different surgeon and she told them to do what I had been saying needed to be done. They started running in the contrast and I told them when I felt full. So full that my stomache was cramping, I felt like I was going to throw up, and I was starting to flush. The doc was convinced I needed more because it wasn't coming out my stoma. Apparently the surgion told him that it would come out my stoma and they could not comprehend the fact that Dr. Safar had gone in and closed off the down part of the stoma. They finally stopped but the final x-rays showed contrast that had gotten into my bag somehow. I don't know how that is possible. If I don't hear from Safar I will call tomorrow and make sure everything is still a go for surgery on the 21st.

I had my appointment with Dr. Safar Wednesday. He was happy with my progress and was ready to do the last surgery asap. I will be waiting until we get back from Amanda's graduation so it will be at the end of August. I will have to go do some pre op testing just to make sure there are no holes where there shouldnt be. The best part is I have been feeling really good lately and I have more energy than I have had in a long time.

Well my wound is not infected and home health discharged me last week. I am still feeling good and i'm gaining strength everyday. I will be going back to see Dr. Safar at the end of May. In other news we made it through a birthday party and wedding Saturday. Two weddings, a wedding shower, a graduation, and a visit with a special friend to go. This month is so unbelievably crazy!

I have been feeling mostly good. The wound vac was taken off Thursday. It probably could have been put on one more time but my wound is getting to small it was getting hard to get the sponge in and it was sticking so it was also hard to get it out. The problem now is I think there may be some infection in there. Home health will be out tomorrow to look at it. My next doctors appointment is may 30 so it looks like my next surgery won't be until late summer.

I got my wound vac put on Thursday and the nurse changed it today. It will probably be off by Thursday because it is already getting to small for it. Now that the drain is gone i rarely have to take pain med so things are improving!

I survived without sidation again. They ended up pulling the drain and was able to get the bleeding to stop so let the healing begin.

I am still in a good amount of pain from the drain. We got a little worried about it Saturday night due to some swelling and pain on the left side of the drain. We ended up calling home health to see what they thought we should do. She called interventional radiology for us who said if i started running a fever go to the hospital immediately but I could wait if there wasn't a fever. The nurse offered to come out and look at it but said she probably couldn't tell us anything without a ct scan. So i decided to wait to see the nurse today then i have my appointment tomorrow so i can last until then.

I knew it was going to hurt for awhile after that drain was placed but this is intense. Yesterday it took me forever to get out of bed then last night i discovered i was almost out of pain killers so I decided to just take one and i could stretch them out and mom could go get me some this morning. I was suppose to go to my parents to eat but after changing clothes I decided not only did i need another pill but there was no way i was going to be able to get back off the couch. Mom quit cooking dinner and went to wal-mart so i would have my pills this morning. Tuesday cannot come fast enough because it should be ready to pull.

Things have been going well since i have been home. Home health is set up to come once or twice a week just to make sure nothing is getting infected again because i can't see the bottom of the wound. Today i went for a follow up with radiology and the surgeon. I thought they were just going to pull the drain and be done with it. Instead they decided to pull it and replace it with a slightly larger one. No i was not asleep for it i just had a local that did not last long enough . Needless to say it hurt a lot. Also when they took out the first drain it started bleeding. They concluded when the first one got put in they went through a vein but the tube kept me from bleeding out. This would also explain why my blood counts dropped after it was placed. I have to go back on Tuesday to have the drain checked. They will probably pull it so if it bleeds again they will have to go in and stop it so I will get to spend the night again. Next I got to see Dr. Safar. He is happy about radiology's plan. He also decided it might be a good idea to get a wound vac again. I'm not sure why he just now decided to put one on but I am happy about it because it will be less dressing changes and faster healing.

Sounds like i will be going home today. My white cell count went down to 16 without them doing anything so they ate happy. Radiology talked about doing an ultrasound to see that clot and possibly pull the drain but the surgical doc said they aren't usually around on Sundays so i will probably need to come back for a drain check next week. Personal i think they ran out of reasons to keep me.

boo

My white cell count went up some more so if course i am not going home. They plan to wait it out today then tomorrow they may do another ct because they suspect there is another fluid collection that is not being drained or treated by antibiotics. So if there is something there then i probably won't go home until at least Monday.

In other news the air conditioner is stuck in the on position so it is 63° around here this morning.

or not

Over night my white cell count went up to 16. It could be caused by switching to oral antibiotics so i will be back to the iv stuff. I probably won't get out today either. I was looking forward to our family Easter party and egg hunt but now i am going to be lucky to make it to church on Sunday for the breakfast Becky and i organized.

Well they decided not to make the drain bigger but the did put in the stuff to break up the clot. I think it got some out but not all. They may want to try again tomorrow....i don't know. I did switch to oral antibiotics today and he said he was going to keep me on it for a week. I think everything is getting in line for me to leave tomorrow.

My white cell count went up last night while my red cell count went down a little so the surgical team wants to keep me until tomorrow. Interventional radiology came in and said the fluid pocket has only decreased by 20% and the ct yesterday showed no active bleeding. All of that leads them to believe the abcess is really a giant blood clot. If all docs agree they are going to upsize the drain then they can shoot in meds that will break up the clot and allow it to pass through the drain.

Once we got here last night they did the normal blood test and checked for a uti. My blood counts were good although the white cell count was 17 so that was high. The uti test came back negative so i have no idea why it showed one before. They also too a couple of staples out and opened it up a little because they found some infection.

This morning I went down for a ct and they found an abcess. They wanted to get some antibiotics in me then they were going to put a drain in it. Unfortunately my iv blew so i ended up with a central line as well as the drain. I am hurting pretty bad right now but maybe by tomorrow it should be better.

I was doing better until Friday. I started hurting more and running a low fever. Today i went to amc and has some blood work and x rays. I still have a uti and we are worried about my wound being infected due to Felix leaking into it. I just talked to one of the docs on the phone and we decided that i should go in tonight. They will do a direct admit so i don't have to go through the er. Hopefully i can get some antibiotics and be all better again.

we wedid wedidit

Well i think i pulled through. The blood cultures came back negative so they are not sure if i ever had a uti or not. Yesterday evening was rough without the iv pain killers but they gave me a dose through my ports and that helped. I am still hurting but nothing that i can't handle at this point. So they decided to go ahead and send me home.

Melissa had a better day Sunday. She was put back on clear liquid diet although by evening she was ready for something more substantial. That didn't happen until this morning. She is not eating much. They removed her pain pump this afternoon. She is having a problem with pain so will get something by IV. Her blood counts are low but they do hope to avoid a transfusion.

Rough Day

Melissa again had a rough night although she did say that she slept better last night. She ran a fever of 101.6. doctor says that is not unusual after this large of a surgery. She also has a UTI. She blew the IV this morning so they stop everything until they could decide what to do. Long story short--they put in a new line in her arm. Because it was fragile they ended up using the ultrasound to be able to draw blood for cultures. They then decided to put in a central line. They had to try a couple of places because of scar tissue. It turned into a two hour procedure. She is now napping.

The good news is that Felix is already waking up. Besides all the above going on she has walked five times today. Drew wants 10 before the day is over but not sure that will happen. Maybe once more.

The doctors are saying she will probably be here a while longer. What ever it takes.

I am back already. Last night was rough because the pain was awful. They finally got it under control and i was able sleep although i kept waking up every hour or so. PT came by and helped me walk the loop and now i am sitting up in the chair.

Here are the details i was told.
-very little scar tissue... The doc was surprised, i know it was God.
-the fistula was right next to my bladder if not connected so he had to put a stitch to make sure there was no damage.
-the catheter has to stay in for 3 days to make sure all is healed.
-he was able to close the fistula without much cutting.
-i could be having my connection surgery as early as 6 weeks

surgery already done

After expecting a five hour surgery we were greatly surprised when it only took one hour. The surgeon was surprised that little scar tissue was found after all the problems Melissa had had with abscesses. we as her family know it is a GOD thing and praise Him for it. She does have a large incision since the surgeon didn't know what they would find when they went in.

short and sweet

The final word is surgery is set for march 22. I will have to be there at 9 but the surgery is at 11. It should take about 5 hours.

I finally have news!!

So curiosity got the best of me and i called the doc today figuring it would take a couple of days to hear back. Surprisingly the nurse actually answered and was able to confirm that i had been discussed in conference and they decided on more surgery. She was also able to tell me that the first available date was March 22nd. So as long as that is okay with him, and i don't know why it wouldn't be, that is when the surgery should be. This also means i should be moving around by Easter but someone else will probably have to hunt my eggs for me.

I'm not leaving you all hanging i still don't know anything. If i haven't heard by Friday i will start calling but most likely i won't know before next week.

For those of you who knew, yes i was sick over the weekend. I went to urgent care Sunday and found out it was not strep but she did give me a shot and i am all better now!

And no I haven't heard anything from the doc.

We didn't get much new news yesterday. He told us there is a hole there still (I could have told him that). Since there was stuff coming out of it for so long it has healed kind of like an ear ring hole and he doesn't think it will ever heal on its own. He now has a better idea where the hole is situated. He is pretty positive that it is at the very top of my j-pouch (that's the part they made to act like a makeshift colon out of small intestine). The plan is to go in and cut out the hole and sew it back shut. He is hoping to do it without messing up the pouch. He also said if things go smoothly he could do the reversal at the same time. We decided we would be more comfortable doing it on two steps and he agreed it would probably heal a lot better if stool was not going through there. He is going to bring me up in their conference they have every Monday with all the docs so he told us to give him two weeks to decide exactly what to do. He is also leaving town for a couple of weeks so i am sure he will be a little backed up when he gets back. So maybe late March or early April.

The trip to stl was good yesterday. The scope went really well. I think the doc was surprised how well it looked in there. She said she couldn't see the hole but she didn't think it would heal on its own so she thought safar would want to do surgery and sew it shut and do the reconnect at the same time. I have a feeling he will want to do it in a couple steps. I go tomorrow and have the ct scan followed by an appointment with safar so i should know more by tomorrow night.

Went to Columbia Tuesday because i was having a hard time keeping my bag from leaking and the skin was so irritated it kept bleeding. The stoma nurse gave me some stuff to help it but that didn't work either. However, Felix has decided to cooperate and he stayed on for two days! I changed it this morning and there was no blood! This equals a good day.

So we made it to stl this morning in the snow but it wasn't as bad as it could have been.

There was a bit of confusion over what test i should have gotten. In the end they decided to do the liquid contrast and take pics of it coming out which is the main point of the test where they use a paste like contrast. unfortunately the contrast came out through the wound showing i still have a hole in my intestine. I go next week and have the scope and MRI done but i don't have to go on the 27 because they basically combined the two tests today. I am going to try to get my appointment with my surgeon moved up so i don't have to wait so long to see him now that we need to figure out a plan b.

nothing new

I was told people were checking this to see if i posted anything. I haven't because nothing new has happened. I feel good, i am keeping my bag sealed for the most part, and my wound looks about the same. Next Monday will start the marathon of tests so i probably won't post until then.

And you all think I'm crazy....

When i was at the doctors they saw my zebra print bag cover and commented on it. That got us started talking about things people do when they have a bag. Safar had the most creative (but a bit disturbing) thing i had ever heard. He said he has a patient who has a liquid output so he put plastic fish in his bag and he tells people it is his portable aquarium....no worries i won't start that one.

On other news things seem to be going really well for me. We got the leaking bag under control. We also had a friend from church have his colon removed due to cancer and he is doing really well. We went up to see him yesterday and was surprised how well he was doing and getting around.

God is good!!!

i see the light at the end of the tunnel!!!!

Doctors appointment went really well. He wants to do two tests that will fill the j pouch and check for leaks as well as a ct to check for fluid collections. He also wants the gi doctor he works with to scope me and she wants to do a mri of the small intestine. The scope and mri is set up for February 20 and then i will go see her for results 2 weeks later. I am hoping to set up all the other stuff for the same days to minimize trips to stl. Once everything comes back i can finish this off with my 12th surgery!

one down one to go

Home health came out today and couldn't put back on the wound vac because there wasn't a hole to put the spung into. We will wait for the official word from the doc but i am Oscar free!!!!!!

the good the bad and the gross

The good: Oscar, my wound vac, and I are getting along wonderfully. They are coming out every 3 days to change it and every time it is visibly smaller. It started at 2.6cm deep and when they measured it last it was .9cm. It has also gone from the size of a half dollar to the size of a dime. It will be changed tomorrow and Monday then Wednesday i go see the doc and i think he will take it off for good!

The bad: i can not keep a seal with my bag. I got a new batch of supplies just before Christmas and i am almost out. I won't be able to order new ones until the 19th due to insurance. If that wasn't bad enough i have to pay the deductible all in one go because i have to pay it before they will release the supplies.

The gross: because i can't keep a seal that means i am washing out a lot of very gross wash cloths and towels. I can't wait to be able to throw out all my disgusting stained washcloths and use the nice ones i got as wedding gifts.

that better

I finally got the wound vac on Thursday. The nurse came and changed it today and other had already shrunk the wound down from the size of a half dollar to the size of a quarter. Things are finally looking up.