I forgot to post these pictures earlier. This is Adam right before we checked out of the hospital.


This is his drain sight...I think 2 weeks after surgery.

2 weeks post-surgery

It was a roller-coaster ride in the hospital trying to get Adam's sodium levels up. They would go up for a while and then back down again. Finally on Sunday morning, day 11, his level was up to 132...135 is normal. So..Dr. P told him he could go home. He put him on 2 immodium a day to slow down his out-put. He also told him to drink as much gatorade as was coming out his stoma. It took a couple days to get things regulated, but he is doing much better now. He's had some drainage out the bottom of his largest incision, but they said that's normal. He's also had some skin irritation today. He has a follow-up appointment in 2 weeks. He also is not supposed to drink water....it dilute his sodium. For now it is just gatorade...I'm not sure how long he'll have to do that for.

Post-Surgery Day 9

Rough start for today. This morning after speaking with the Dr.'s Adam got nauseated and threw up again. Apparantly they have not been watching his sodium levels. His level dropped to 118. I can't remember what they said is normal. Having so much out-put through his stoma does hot allow his body to absorb any sodium. Not having a colon also dampers that! Low sodium is most likely what caused his nausea and vomiting. He was able to eat lunch and dinner...but not much of an appetitie. Dr. P had a GI Dr. come in and devise a new plan of action to get his sodium back under control. He is not allowed any water...only powerade and gatorade. They are also staring him on Immodium tonight to help slow things down a bit so he can hopefully get more absorbtion. Dr. said he needs to have 2 good days of his sodium regulated before they'll let him go home. They will be in every 4 hours to take his blood and check his sodium levels. We're keeping our fingers crossed that we will be able to go home Sunday.

Everything else looks great. His stoma looks good, incisions look good, everything else is good. It has been a very long a frustration day...to say the least!

Post Surgery Day 8

Adam was abe to eat real food today. He ate breakfast, lunch, and dinner. He also took a few "real" walks. He has seemed to feel good. I had to go home around 4:00 and stayed the night at home so I could go to Logan's Christmas program in the morning. I actually slept like a log...it was nice.

Adam has a large amount of out-put coming from his stoma. They are worried about dehydration...so they have him hooked to 2 iv's to pump in whatever comes out. They also gave him some magnesium becuase his calcium level was low. Apparantly magnesium helps keep calcium in your blood.

He hasn't needed pain killers since Wednesday night. He still gets a prevacid shot, blood-thinner, and prevacid morning and night.

Day 7

Things are looking up a bit. Adam was able to walk out into the hallway quite a ways today. He complained of acid today. Around lunch time he vomited again and said he felt much better. I ran home for a few hours and while I was gone he said he walked all the way to the other end of the hall. He also had a piece of toast for dinner and doesn't have any nausea or acid right now. He had some blood work done today and his calcium level was low so they are giving him some magnesium to keep the calcium in his blood. The Dr. said he would come in the morning and talk about possibly adding some more solid food tomorrow!


Adam's first real walk! Yay!


I took a picture of this sign on his door. I think it's kind of silly. They put it on so everyone knows he's not supposed to get up and walk on his own. He also has a yellow wrist band on the coordinates with the sign.

Post-Surgery Day 6 - Drain removal

Today has been an eventful day. His diet was upped to now include simple startches, ie: crackers, toast, english muffin, etc. They also removed his iv and his drain. If he starts to have too much output into his bag, they'll have to put an iv back in to help keep him from getting dehydrated. Following is a picture of the drain before they pulled it out.



Update: Shortly after they took out his iv he started getting really nauseated and a lot of pain. We had the nurse put the iv back in and she was able to give him something for the nausea. He also took 2 Loritab and fell asleep. Around 4:00 I got him up to try to walk a little bit. He made it out into the hall where we met the Dr.'s. He got dizzy so we came back into the room. He then started throwing up...a lot. So...they took away his liquids and put him back on iv fluids. It has been 7 hours since he took the Loritab, and he still has no pain. As a side note...he hasn't had to use the bathroom since around 9:00 this morning. I'm not quite sure his stomach was ready for food/liquids. The Dr. said if he keeps throwing up they'll have to put a tube down his nose to drain his stomach. Maybe we were trying to improve things too quickly. They were talking today of possibly letting him go home tomorrow. He is definitely not ready to go home yet. The Dr. said he has to be up and walking around by himself before he can go home! Lets hope for more improvement tomorrow!

Day 5

Small improvements again today. Adam was able to walk out to the doorway and into the hall. He didn't get quite as nauseous. The Dr. came and removed the bandage that was over his seutchers. They also started him back on clear liquids. He's had to stand up to use the bathroom now, which is a good thing...gets him moving more. Still is very tired and fatigued. He's had some jello, broth, and water today. Hopefully we'll see more improvements again tomorrow.
Also... the wound ostomy nurse came and showed us how to change his bag. Of course I had to get some pictures of his stoma. I think we are calling it "Roma the Stoma" becuase Adam thinks it looks like a little Roma tomatoe.


This is Adam with his favorite meal for the past few days....ice chips!!


This is "Roma the Stoma". There are some stictches around the outside. You can also see the staples pretty good from his largest incision.


Adam with his new best friend "Roma"

Catheter Comes Out - Day 4

Took the catheter out today. He was also able to walk to the door-way today. He got dizzy, so we turned around and headed back to the bed. Once he sat down he wretched a little bit. He has had to stand up a few times today to use the bathroom too. His nausea seems to be a little less this evening. The Dr. said he could try some clear liquids today, but he decided to wait until tomorrow since he was still nauseated this morning. Hopefully he'll be able to keep stuff down him. He has had some more "waste" from his stoma, which is a good sign. He seems to be needing the Deladid less, which I think is a good sign. Also gave him a sponge bath today.

48 Hours Post-Op

Another hard day. The new medication seems to work better than the Morphine. He still gets a shot of blood-thinner, and also some Pepsid in his IV to prevent acid reflux. Still no food or drink. He got up twice today and walked in place. Got very nauseated...and dizzy. He got some anti-nausea stuff beforehand, but it didn't seem to help. However, he just told me he thinks his stoma just farted. This is a good sign. When he starts passing gas through the stoma that means his stomach is starting to work again....and hopefully they can start him on at least some liquids. I can't help but think that he will have more energy once he can get some food in him. Hopefully it won't make him vomit. He told me today that he didn't think it was going to be this hard.

Day 2 - Room 5213

Today has been a rough day for Adam. Dr. P has checked on him twice and says everything looks great! K even came in to check on him. The Chief Resident said his goal for the day was to get up and walk around 4 times. The first time the nurse helped him sit up. He got nauseated and was really loopy and dizzy from the morphine.

I was able to go home for a few hours, shower, and see the boys. Adam's parents stayed with him. I guess the nurse came in again and made him sit up. She sat him straight up and said she'd be back in about 10 minutes. But was gone for quite a while. When she finally came back and made him stand up he was miserable. He also had a couple of visitors while sitting and talking to them made him sick and weak.

He has had some trouble controlling the pain today with morphine, and has started itching. The Dr. changed his pain med to something that I think is called Deladid. He has stopped itching and said his pain has drastically been reduced.

They also have him sucking on a breathing machine once an hour to help keep his lungs clear.


This is Adam the morning after his surgery.


This is the stoma with the ileostomy. The green stuff is his "waste."


This is the end of the drain. When the egg-shaped thing gets full they empty it. Dr. P said it looks nice and clear...which is good.

Colon Free - Day 1

We checked into the hospital at 6:00 am. They arrived promptly at 7:30 to take Adam back for surgery. His surgery lasted nearly 6 hours. Dr. P said with men it's a little harder because their pelvis is smaller. The surgery was done laproscopically, with Dr. P inserting his hand to actually removed the colon. We received updates from his nurse every 2 hours. Dr. P said the surgery went well. He also took a picture for us. He was in recovery for a couple hours....waiting for his output(urine) to improve. They were not able to give him pain meds after the surgery because his breathing was too slow. So when we arrived in his room he was in a lot of pain. It took about 30 minutes for the morphine to kick in and make him feel better. He is complaining of lower back pain, but said his stomach doesn't hurt much. He is also on oxygen for the time being. He had 1 incision where the colon was actually removed. 4 small incisions for the laproscopes, and then 1 more small incision...can't remember what that one was for. He has a drain coming out of his stomach that has a egg-shaped container on the end...this drains the fluid from his belly. It is a red-colored fluid. He also has a catheter in. He hasn't said anything about that yet. He also has compressor bands on his legs to keep from getting blood clots. Tomorrow they will get him up walking around. No food yet. Just a few ice chips. The dr. said if he starts swallowing and swallows air it might make him throw up...and that could pop open his incisions.


This is Adam the night before his surgery. I think he weighed in around 115 lbs.


This is the mark the nurse put on him so the Dr. would know where to put his stoma.


This is him just before the surgery. Happy as a little J-bird!

Decision Time

It has been a long time coming, but today we finally had Adam's colon removed. He has progressively gotten worse over the past year and a half. Every time he gets a cold or the flu he is in bed for at least a week. This is no way for him to live. After much fasting, prayer, and love and support from wonderful family and friends (and of course K's recommendation), we finally did it. Adam is now Colon free!!!! He had a bought with swine flu just before Thanksgiving, but said he felt better today than he has in a long time. I am going to try and write a little each day of his progress. I will also be posting some photos...which may be of slight graphic nature. Queezy stomachs beware! I know the next few months with be tough, but I am just glad he is finally on the road to recovering from this illness. I can't wait for him to get his life back!

Is no news really good news?

It's been quite a while, but not much has happened. We found out that Adam's pituitary gland is small...that is why he is not producing testosterone. He has been getting shots now for a few months, which have really helped his libido and his energy. However, he went in for a blood test a few weeks ago and now his testosterone is too high...which can have the same effect as being too low. So..they will just reduce the dosage of the shots.

Also...the Flagyl started making him sick after about 2 weeks...and then he digressed back to normal. He got tested for the C.diff and there was no sign of it. We are thinking of trying a stronger Antibiotic and a different maintenance drug. For now...he is living with it all again!

Update

Adam is tolerating the Flagyl well, and it seems to actually be helping his symptoms. 1 bowl movement during the night opposed to 5 or 6, and not nearly as many during the day. In fact, we went out to lunch yesterday for his 30th birthday, and he didn't even have to take a bathroom break during the meal. He thinks food is possible staying in him longer as well. That is good. He isn't having any pain before a BM either. We're not sure what to think at this point. Right now we are cautiously optimistic. K does not believe this is what caused his colitis. She tested him for it two years ago and he didn't have the C.diff. Most people don't tolerate the Falgyl, so we are lucky Adam seems to handle it well. If we can get things under control we might be able to control the Colitis with meds.

Also...the biopsy came back and there is no sign of displasia! Yay!!

There is still the unresolved issue with the pituitary gland. We will be in contact with K on Monday with more follow-up.

Adam has been a real trooper through all of this. It is so refreshing to see a glimmer of hope in him again and see him feeling better.

More updates to come!

Health History

Tomorrow I am going to start making phone calls to collect all of Adam's prior medical records. We are going to make a time-line/history of the past 8 years. Once completed I will post it.

518-2

It has been an eventful and overwelming week for us. The MRI didn't take as long as we thought it would. We also learned that the machine itself cost $6,000,000. That's right....6 million! No wonder it costs us $2200!

Friday was Adam's scope. K was able to get up into his small intestine and see that there was inflammation. She also was able to get 5 biopsies, inluding a polip. While taking the 5th biopsy she said the tissue just flaked right off. She was afraid she perforrated the colon wall, so she immediately clamped it and pulled out. She said his colon was in bad shape, one of the worst she's ever seen. She admitted him into the hospital so she could run more tests, and monitor him in case it was perforrated. He had to remain on an all liquid diet for the next 48 hours. He had a lot of pain from the biopsys and a lot of gas discomfort. He also complained of a bad headache. He vomited when they gave him some morphine, and also when he tried to swallow a potassium pill. She also put him on Flagyl and Cypro...two antibiotics. Adam was in room 518-2...2 meaning bed #2. He had a roommate. Not the ideal situation, but it wasn't so bad. All-in-all we had a good experience with the Dr.'s and nurses.

It was kind of a whirlwind for me, arranging babysitting for the boys, and wanting to be with Adam at the hospital(UofU). Luckily we had family that was able to help!

We also got to meet with a few members of the colo-rectal surgical team. They were great and answered many of our question.

So here is where we stand today:
Several labs were taken to figure out if it is for sure UC or possibly Chrones Disease.
We are waiting for biopsy results to make sure there's no displasia or cancer cells
If there is any displasia the colon comes out!
There is also the issue from the MRI..Adam's pituitary glands are small, which is why he is not producing prolactic or testosterone. This could be a by-product of the inflammation in his colon.

K called today and said one of the stool samples she ran was positive for C.diff...a kind of bacteria bug. She put him on a strong regimen of Flagyl for 30 days. We are still researching C.diff, but apparantly it can cause mild diaharrea and lead to UC. If not treated early on it can become almost uncurable.
Could it be that Adam has had C.diff all along? We're not sure. Adam has been tested for C.diff before, but K said she's not sure she's ever done this specific ultra-sensitive test...it's new.

MRI

Today we are going in for Adam's MRI. Just getting the Pituitary Gland checked. His scope is scheduled for Friday.

Scared

Adam is at stake meetings tonight. I have the boys to bed early, so this gives me some free time to myself. I thought I'd try to back-track a little and explain how we got to where we are today...with Adam's health that is.

He has been suffering with UC (Ulcerative Colitis) now since May 2001...that's 8 years. And I do mean suffering. Constant diarhea. He has to go to the bathroom several times during the day, and usually up 4-5 times at night. He has tried so many meds we can't even remember them all. He has had remicade infusions, and tried a few diets. He's even gone so far as to give himself enemas.

It has been 2 years since his last scope, and I think almost as long since we've seen K (his gastrointerologist).

Last fall he contracted a virus that nearly killed him. He lost about 25 lbs., and has not gotten his strength back since.

A few weeks ago we had our Stake Conference with a visiting General Authority. Long story short - the General Authority told Adam he needed to call a Dr. Doty at the missionary department. He said there were some meds that they give missionaries who come home from foreign countries to kill all sorts of bacteria, bugs, parasites, ameobas, etc. Dr. Doty referred us to Dr. Hale at the UofU, whom we had seen back in '06. We spent about an hour giving him Adam's history, and he ran a bunch of tests. Now here's the kicker. He told us that since Adam had been suffering so long without relief, he would recommend getting his colon removed.

We had told ourselves we would only consider this option as a last resort, and hadn't thought of it since our first visit with K...where she did suggest it. Suddently it all seemed clear. We believe that General Authority was ispired to send us that route so that we would once again consider removing his colon as a viable option. It also sent us to see K again.

Our visit with K was informative and eye-opening. When she walked into the room she couldn't believe how sick Adam looked. She actually used the "c" word, and said that it is a high possibility the longer he suffers from the disease without responding to treatment. She was actually glad we had decided to look into removing the colon. She requested a bunch of labs.

....turns out Adam is not producing enough Prolactin, which is related to having low testosterone levels.....this indicated that the pituitary gland is not functioning properly. So..naturally that means MRI. She also ordered a Chest X-ray. We are scheduled for the MRI and a scope on April 17.

Since Adam's Kidney stone last summer he has been seeing the Urologist...he's the one who had ordered the testosterone test and discovered it was low.

So, we wait until the 17th. Hopefully there will be no tumors or cancer, and we can just proceed with meeting with the surgeon.

As I look back on the excruciatingly painful events that have taken place in Adam's life over the past year, I can't help but think it has all been to lead us to this catalistic decision. Without the kidney stone he would have not had his testosterone level checked, therefore leading us to the problem with the pituitary glad. Without that awful virus we probably would not have gone to see K or even think about colon removal as an option.

Or perhaps his body is telling us it just can't take any more!

Now...we are just scared. The not knowing is the hardest part.

Adam..you are the strongest person I know...I love you!

What I want for him!

I want him to be able to go to a reastaurant without having to use their restroom...more than once.

I want him to be able to go camping with his sons.

I want him to be able to take his boys fishing.

I want him to be able to sleep through the night.

I want him to be able to go hiking, skiing, or simply take a nice walk around the park.

I want him to not have to carry a roll of toilet paper in his truck.

I want him to be able to stay away from dirty gas station restrooms.

I want him to not feel like his health always has to be a topic of discussion.

I WANT HIM TO BE RID OF THIS FREAKIN' DISEASE!!

The Beginning

Adam and I just visited with an Infectous Disease Specialist yesterday for nearly 1 hour. In all our medical experience I don't think we've had a Dr. spend this much time with us. It was quite reminiscient as we recounted his past 8+ years of medical history with this disease. It was eye-opening for me to recall just how long he has been suffering with this.

I decided to create this blog, not only for him, but so that we could catalog his history and his future. I do feel he has a bright future ahead of him, and we are going to conquer this....together! I might not even share this blog address with anyone at this point, but rather, we can use it as a way to write our thougths and feelings as we begin this next journey. I say "begin" because we are contemplating having his colon removed. Yes...I said removed.

Dr. Hale (ID Dr.) is testing for some amoebas, parasites, cryptosporidium(which Adam did have a few years ago), and TB. If nothing shows in these tests, we will start considering having the Colon removed. At this point I am praying for a parasite...is that bad?

My next step is going to be to catalog the past 8 years of medical history. Yesterday I thought it would have been so much easier to have a list of medications, when they were taken, and what the result was. If we could have just handed the Dr. a paper and said, "here...this will bring you up to speed," it would have been a lot easier. We also have some interesting information to share about Cleansing diets, all-liquid diets, enemas, Kidney stones, viruses, steroids, etc. All-in-all, this will be pretty graphic stuff, but very informative.