Incision site

It is now Thursday. Adam has been here for a full week. He has started passing gas and having bowel movements today...so hopefully he'll be able to at least take in liquids tomorrow! His belly is sore both inside and at the incision site, but he is feeling pretty well. He hasn't been nauseated...so that is a huge plus!

Surgery

Today is Tuesday...Adam has been in the hospital since Thursday. He had the drain in for a few days with no improvements...so we opted for surgery. Dr. P was going to try and do it laproscopically...but once he got in there he realized he couldn't do it safely. The adhesion formed a band around the small intestine. He also removed a few other adhesions that looked like they could possibly pose a problem. Adam was in a great deal of pain after surgery. It took a few hours to get him comfortable. He is on Deladid and Toradol. They offered an epidhural this morning..but he hasn't needed it. He has already gotten up to walk, had a sponge bath, and freshened up. Once things start moving he can start eating again.


This is the miserable drain.


This is what is at the end of the miserable drain.


This is Adam just a few hours after surgery!

Blockage

It has been only 2 months since Adam's take-down surgery. He has a blockage...about a foot into his small intestine. He is back at the hospital. They placed a NG tube down his nose to try and drain some of the fluid.

His trouble started about 2 weeks ago. Stomach irritation, occasional vomiting, acid reflux, etc. Then a couple nights ago he awoke with pretty severe stomach pain. We took him to the ER in the afternoon. They did a CT and found a partial blockage. They transfered him by ambulance up to the U. Dr. P said that sometimes these kinds of blockages can work themselves out if all the fluid build-up is pumped out. He has had the tube in for about 24 hours. It has been very uncomfortable...lots of gagging. Then..after a walk we discovered that it had come out quite a bit. The nurse pushed it back in, but it wasn't pumping anything out. She got hold of a Dr. who told her to take the tube out. Apparantly he only had abou 250 ml come out during the night...but maybe that is because the tube wasn't in the right place! At this point it is a waiting game...waiting to see if things start moving through like they are supposed to. If not...surgery is the next step!

All closed up!

Adam's stoma hole is all closed up now. It's been just over 5 weeks since his surgery. It still bothers him when it rubs on his belt or pants, but all-in-all it feels good. We are glad to not have to pack it any more! Adam is feeling great! We had our follow-up with the Surgeon, and he just needs to see him once a year to check on him! Adam said he's feeling like a new man! Yay!

Time for Photos

This photo was taken about 5 days post op...just after we got home from the hospital. This shows the wound with the gauze strip still in.


This is what it looks like when we take the gauze out...his skin looks pretty yucky here too.


This photo was taken today...about 12 days post-op. The hole is definitely smaller and I use less gauze than a week ago.

Adam's strength and energy continue to improve. He is taking 2 immodium a day now, and that seems to be working well. He also tries to eat rice, apples, bananas, and oatmeal to help "plug" things up a bit. Yesterday he had some raw veggies before bed...didn't do so well in the night. Cooked veggies are supposed to be easier to digest. He's hoping to go back to work next week. The opening is still sore when I pack it.

Home

We brought Adam home from the hospital yesterday...day 5. He is doing pretty well. I can see a huge difference from the first surgery. He has quite a bit of discomfort when his bowels are moving, and also when we change his dressing and at the stoma site. His energy level seems better and he is eating pretty good. He thinks he might have had too much immodium in the hospital...seemed like he was almost "plugged" up. I heard him get up a few times during the night. I am going to try and take pictures next time we change his dressing so you can get an idea of what that is like. The Dr. told us that another patient of his was feeling great by week 3!

This is Adam just minutes before surgery! His surgery lasted just under 2 hours!


This is the wound dressing. It bled a lot the first day or two but has slowed down considerably now. We still pack the hole 2 times a day...it's painful for him when I push the gauze into it.


This is Adam the day before he left the hospital...with the special "ointment" they gave him for butt burn!

The Stoma

We took these last pictures of Adam's stoma a few days before take-down surgery.

This is the stoma...Adam put his thumb next to it so you can get an idea of how big it is. This also shows the small opening really well. There is some skin irritation around the stoma where the wafer goes.


This is what it looks like with the wafer attached.


This is the bag...he used the opaque one's so he couldn't see his poop through the bag...but we ran out a couple weeks before take-down and didn't want to buy more....this one is clear!


This is what it looks like with bag attached.

April Fool = Surgery #2

We are day 4 post-op. Adam's take down surgery went great...just shy of 2 hours. It has been a completely different experience from the first surgery. He was feeling pretty crapy on the clear liquid diet the day before. He started vomiting the night before and morning of. They were able to give him naussea stuff before they took him back. We also talked to them about his experience of waking up last time without any pain killers. They kept him in recovery longer so they could hook his pain iv up before he got to his room. He was pretty drowsy for a few hours. They also put some kind of a patch behind his ear for naussea.
The first day he only got to swab his mouth with water. Day 2 they let him have ice chips and sips of water. That night he started having bowel movements. Day 3 he got to move to a post-op diet..mostly liquids. Continued to have bowel movements and started on immodium to try to slow things down. Last night he was up a lot going to the bathroom and even had some seepage. It might take a while to get the right ammount of immodium regulated. He started on real food today. He's eaten some oatmeal, a banana, potatoes, and rice. Hopefully they will help thicken things up a bit. He has quite a bit of pain when stuff is moving through, but that is normal. He is in his on pj's now, and is ready to go home. Hopefully soon. We've had exceptional nurses this time around, and are grateful for their expertise and willingness to answer questions and help. We also brought our own toilet paper from home and some ointment.

Can't keep track

I'm having a hard time keeping track of the time frame, but I took this photo of "Roma" about a week ago.

Adam has his "Barium X-ray" on Friday and everything is a go for surgery! The actually didn't have to do the enema...they were able to insert a catheter in through his stoma to put the dye in. We have a pretty cool picture of his J-pouch x-ray...but I am not able to copy and upload it.

Adam is feeling great...a little nervous for the next surgery. Also..the surgery was moved a week ahead because of scheduling issues with Dr. P. It will be April 1...we're thinking of playing a joke on the surgeon!

Things are looking up!

It's been just over 10 weeks since the surgery. Adam is feeling and doing great...a big relief!! He's back to work, and hasn't felt this good and a really long time.
His re-peat scan showed that the absess had shrunk from 3x3 cm to 1x1 cm. Dr. P kept him on the antibiotic for 2 more weeks. Next week we go in to have his J-pouch tested for leaks before they do the 2nd surgery. They will also check his blood work and his absess at that same time.

His iron levels have improved, but K told him to take an over-the-counter iron supplement. He did not tollerate it well. Got lots of stomach pain and cramping. He decided to just keep taking the multi-vitamin he's been on to see if that keeps improving things. He's gained nearly 10 lbs!!! He also had some "stomach ache" feelings...which he hasn't felt in nearly 10 years...from food he's eaten. He said he's forgotten what a normal stomach ache felt like! I will post some more pictures of the stoma next time we change the bag...it still continues to change and look different every time we change things. Adam is getting used to the bag, but it does cause some skin irritation and discomfort.

All-in-all things are going great! We are anxious for the next surgery, but worried at the same time. We want to keep seeing improvements!!

8 Weeks already!

I can't believe it's been 8 weeks since the surgery. Adam was back in the hosiptal last week with an absess. He finally called his GI about the pain he was experiencing. She told him to come in for some blood work and to get a CT. CT showed an absess so Dr. P admitted him. They were planning on placing a drain the next day. When they finally came down to get us and the Dr. was explaining the drain placement, risks, complications, etc., we decided we wanted to just try an antibiotic first to see if it would take care of it. The absess was about the size of a grape, and we were told it was in a hard spot to get to around lots of nerves and arteries, and that they weren't even certain it was large enough to get a drain in.

Well...Adam's feeling great! He's feeling better than he has in a long long time. Still gets worn out easily, but feels good! Such a relief. His pain is completely gone. We go in next week for a repeat scan to see if it's cleared up.

Blood work showed he's very anemic!

Last night on the scale the results were a 5 lb gain so far! Hooray!!!

7 Weeks = Absess

Adam is now 7 weeks out of surgery. He has been having some pain in his tail-bone area. Finally on Monday he called his GI. She told him to come in for some blood work and a CT...said he might have an absess. Sure enough...he has an absess about the size of a grape. They admitted him that night so that they could start him on iv antibiotics and possibly place a drain the next day.

6 Weeks Post-Op

This picture was taken on the 8th of January...almost a month after the surgery. The stitches are still visible and you can't see the "hole" of the stoma.


This was taken at 6 weeks. There are some definite changes we've noticed with Adam's stoma. We can now see the hole, all the stitches are gone, and his skin seems to be healing in around the stoma.

It's been a heck of a time trying to figure out which wafers and bags to use so that his skin doesn't burn and so that there aren't any leaks. We've finally ended up with a convex wafer. His stoma is almost flush with his skin. It is just under 3/4 in. in size.

Adam takes 1 immodium in the morning and 1 at night. He has also been eating corn chips and avacado to try to slow things down a bit. He is still drinking lots of gatorade, but has also added in water. He has learned that if he goes more than 2 hours without eating he starts to not feel well. He also seems to get dehydrated really fast. He has still had some stomach discomfort and a lot of "butt" pain. He seems to do ok if he keeps lb prufen in him. He also went to the Dr. and got a B12 shot and his Testosterone shot. Of course he's anemic. He's taking some vitamins that will hopefully help too.

He still has no energy. He's going to start walking to hopefully build up some strength. He's getting tired of people telling him he needs to eat more. "oh really...is that all....we've haven't tried that!!!!" It's not like he can all of the sudden start gorging himself! Oh ya...and then there's the classic comment of, "oh ya, I've had IBS before...it's terrible!" "Ya...did you have constant cramping and diarhea for over 9 years?!!!!"

Anyway...We believe things are progressing how they are supposed to...just slower than we would like. We wish he were already running marathons and back-packing through Europe!

4 Weeks Post Surgery - Adam's Colon

We had our follow-up with Dr. P yesterday. Things are going well. We scheduled surgery #2 for March 25. We als got to see the picture of Adam's colon. We learned that his appendix comes out with the colon. He also took out about 6 cm of his small intestines that were inflamed, most likely from a sort of "back wash" from his colon. Dr. P said that of all the "elective" surgeries he's done..this was one of the worst he's seen. Adam's colon was nearly half the size in length as it should have been..it was very swollen and shrunken. The picture looks disgusting, but is fascinating at the same time.

We also learned that the staples just stay in his J-pouch...forever I guess. He has had some "pain" in his rectum, but the Dr. said that should gradually go away. We have also had some issues finding the right wafer to use for Adam's stoma. We finally got the leaking problems fixed. He is using a Durahesive, Convex moldable wafer. Basically we are able to "mold" the hole of the wafer around his stoma, and the durahesive material puffs up when it gets wet from his stool and provides a more secure barrier around the soma. The durahesive material is better for more watery stool...so it works better than the stomahesive. All of this we have learned through searching the internet and browsing chat rooms and blogs. What a life saver the internet has been!

Dr. gave him the ok to drink water, but still wants him to get plenty of gatorade to keep his electrolytes up. He is also able to get his B12 shots and testosterone shots as needed. We will go in the 5 of March for a Barium test. They will put barium into his J-pouch and then do x-rays to test for any leaks or problems with the j-pouch before he has the take-down surgery.

Adam is slowing gaining his energy and strength back. The visit to the UofU completely wore him out yesterday, but he insisted on not riding in a wheel-chair.


And here it is! Yuck!