Oh,gosh. I can't even offer a thought on what it might be. I'm just praying it's of little importance. I suppose it could be something he ate that just didn't make its way out.

Sending good thoughts,

((Daniel))

Did he really eat potato skins? That's a big no no for an ileostomy. Nothing with a skin, no corn, no veggies. He may have to have surgery if there is some big blockage in the small intestine. The doctors know he ate potato skins? They should do a CT and maybe a MRI to see if there is blockage. That could start up an infection. Sandy has to make sure he follows the diet properly. He can have mashed potatoes but without the skin. No oranges with those fibers, no tomato skins, apple skins, etc. These things will NOT fit through the small hole in the ileostomy. Plus all these things do not get digested.
It's hard to give up some of your favorite foods but you have to make sure you do not get this kind of blockage. It's like throwing veggies down your kitchen drain without a garbage disposal. Pretty soon everything gets backed up. And that really hurts. When a visiting nurse told me of another patient who ate the wrong things, he was in terrible pain. They massaged his stomach to try and move things through. How long has this pain being going on?

Gosh, I hope he is going to be ok. I will say some prayers for him tonight.

Do keep us updated!

Oh, Daniel...I can completely understand wanting to eat REAL food after being good for so long...I hope it resolves easily and without complications...please update us, deby.

Oh no. We're thinking of you.

I hope this issue with Daniel is resolved soon.

Well, he was moved to his own room so at least Sandy has a chair bed to sleep in. They have examined him, given him CT scans, etc. and they really don't know what is going on. He could have a twisted bowel or it could be those potato skins or even possibly Behcets. He is back on liquids and they are keeping a close eye on his vitals. They can not really tell unless they operate. Of course they don't want to do that. As long as his vitals remain decent, they are trying to treat him as is.

They discovered a blood clot in his pelvis so he is receiving medication for that. He's back on high doses of pain meds and Lord Daniel (Iron Man) was awake all night and not acting like himself.

At this point it is a wait and see. Sandy said she was hoping he'd be responding better than he is but it's the weekend and everything is slow at the hospital. If it's a plugged up ileostomy, they are hoping it may resolve itself. Daniel's last surgery wound has not yet healed (no staples can be used).

Three, yes, they know he ate potato skins. Can you say 23 and trying to push the envelope?

So, it's hurry up and wait for Lord Daniel right now.

So sorry to see this news of a setback. I will be away for a few days. Hope to hear Daniel is home again by Thursday.

"You hear that, Daniel?" :-)

I will send healing thoughts to Daniel. Goodness knows this poor boy doesn't need another setback ;o(

(((Hugs))) to you, your family and friends, Daniel-son.

Any updates on our naughty boy who ate the verboten potato peels? (Not that I blame him, really, they ARE delicious, especially slathered in the butter and sour cream he's probably getting to eat to help him gain weight, but still!) I have continued asking The Powers That Be daily to care well for this stubborn young man.

Any news, gold dear?

Yes, I've just been a bad journal keeper. He's still in the hospital. They *think* there was a couple things. A partial twisted bowel and a plug. He's is on liquids today. If he handles them well, tomorrow he is back on full diet. If he does well with a full diet, he may come home tomorrow night.

I was talking on the phone to Sandy yesterday when Daniel felt something move inside his stomach. We both hoped his partial twist may have righted itself. His pain seems to have subsided so they reduced his pain meds and he slept last night. Woo! Hopefully we won't see another Iron Man return. Those pain meds have the opposite reaction on that one. I'd be out cold.

He will be on medication for his blood clot for three months. So we're hoping for a quick recovery. It's been 5 days today.

Good to hear. No more skin anything for Daniel until he can get rid of this ileostomy. Any idea when that would happen? Many months from now?

Well, a much better test than a CT was performed on Daniel and now they think it wasn't a twisted bowel or even a blockage, rather it's a Behcet's like vasculitis that is outside his bowel, where the surgical site was. Seems the prednisone dosage they have him on isn't high enough to control his Behcets but high enough to prevent him from healing.

They want to put him on another medication, called Humira. This is not an easy decision because the drug can have some major side effects.

Here's what the company says:

"Serious infections have happened in patients taking HUMIRA. These infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some of these serious infections have been fatal. Patients treated with HUMIRA also may be at risk for other serious side effects including certain types of cancers, allergic reactions, hepatitis B virus reactivation, nervous system problems, blood problems, heart failure, and certain immune reactions, including a lupus-like syndrome. Please click here for additional Important Safety Information you should know about HUMIRA and discuss it with your doctor."

Yikes!

Now golddust, are the doctors still planning on giving Daniel chemo? Because he cannot have chemo which lowers your resistance to germs and take medications like this Humira which also open you up to infections. It would seem the Humira lowers the white blood cell count also.
They might have done a PET scan on him which is what I had at Mayo or maybe an MRI which shows a lot of detail.
What advantages does this Humira have over prednisone?
If they do start him on this new medication, they will have to monitor his wbc and rbc closely and watch for any problems. They most likely will not let him go home right away since they have to see how he does on this new medicine. He has been through so much. Ok, more prayers for Daniel.

While the news isn't exactly cheering, in a way I'm *so glad* it wasn't the potato skins...Daniel doesn't need the stress of thinking that he might have brought something on himself. He's having to deal with so much...please give him a gentle virtual hug from Oregon, and I hope that even with all the assaults on his body, his soul can still manage some serious singing...

Three, we really don't know much more than what I said. I'm sure there's lots of questions to be answered. Sandy doesn't know anything at all about the drug. I haven't talked with her since I did a little reading up.

Yes, Fly. I know what you mean. That said, he had a little cry over himself today, frustrated that his Behcet's wasn't under control. Sandy just said, "Dee, you have to remember that this drug they are talking about works immediately. The other drug takes 12 to 16 weeks. This may be good news."

I don't know about that. She mentioned another drug (that she did know about) whose side effects sound just like this one. I don't know what to tell her or if I should keep my mouth shut and let the Drs deal with them. They have saved his life more than once and they know what he is up against better than me. Just sayin'.

Well, Sandy just called me, right at this point in my post. I asked her Three's question about the advantages of Humira over prednisone. She said no one should be on prednisone long term. They want to continue his immune suppressor medication to control his white blood cells and combine it with Humira and shoot for a low dose. They have to get his Behcets (vasculitis) under control.

There's lot's of paperwork surrounding this drug and it has to be ordered. Sandy has 15 questions on Daniel's board, ready to ask the Drs as I did end up sharing some warnings from three websites. Who do I think I am, able to keep information shushed. That just is not me and she's glad. She said it may be one or two weeks before they start him on it.

Apparently that fancy test was scheduled to far out for the Drs liking so they did another CT scan. Apparently the "stricture" (Behcets related) was finally bad enough to see on a CT scan. It was on the outside of his bowel but creating a narrowing. I asked her if there was another term for stricture and she sweetly explained that this *was* a simple term. LOL! It wasn't to me.

So this Behcets disease causes white blood cells to over reproduce? Is that right? And then these groups of cells attack certain areas of the body? So the confused white blood cells gathered at the site of the surgery thinking they were helping to heal that area but instead caused the bowel to become constricted. That's a crazy disease. I can see why the doctors are moving on to these newer drugs.
Wow. I have a cat that has had an autoimmune disease for most of his life. The vet put him on steroids when this first started but I weaned him off of those once the symptoms went away. His gums would get all swollen and once it went after his ears. I think I only did the steroids two times and then stopped. The symptoms became less and less. And since my cats do not lead stressful lives there are no real triggers to set off another attack. If he were an outside cat, I bet he would have had much worse symptoms.
Well, I am glad Daniel is getting good care. Maybe these drugs will do the trick. God bless him.

Exactly, Eileen. It *is* a crazy disease but you are getting it right. I don't really know what the white cells are thinking but it is exactly how they behave.

Oh dear. I'm kinda sorta glad it wasn't an obstruction, but it still sounds very scary. I'm glad his doctors are making progress, though. Behcets sounds like a very complicated disease. I will send warm and healing thoughts across the miles to Daniel and his family and friends.
Thanks for the update.

I've been so busy with stuff around here I haven,t checked in with the Daniel news. I sorry he is going through this ordeal. Hopefully this will be a real short stay this time and he can get back home and working on getting stronger so he can beat this. (p.s) Thanks for the compliments on my new grandbabies.

ok, so this disease would act like this if it was on a tv show.

There would be a domestic disturbance at a house, no violence, just a loud argument. So instead of calling the local policeman who would calmly taught these people down, the swat team is called in plus the FBI with helicopters, tons of cop cars, swat team wagons. The streets get blocked off, neighbors are evacuated. Normal life is suspended while the law enforcement - the white blood cells - totally over react and actually cause much more problems than healing. Then someone with common sense finally shows up and clears out the FBI and swat teams and calmly talks the couple down suggesting they take a romantic weekend vacation. The neighbors can come back home. Life returns to normal. These actions would be like what the new drugs would accomplish.
Poor Daniel, swat teams are attacking his colon. No wonder he was in such pain. I hope he gets much better soon.

Bravo, Eileen. You explained in one paragraph what I could not say in 150 posts. You are right on target. Thanks for the help.

Clapping,
Golddust

I got a call from Sandy. They are on their way home. Dee was sleeping in the car. He stills feels pretty miserable but his ileostomy is working fine. He hasn't had any pain meds today at all. They will return for an appointment on June 16th. Guess that is when they will deal with the new medication.

I'm unclear what changes they made in his treatment. She was in stop and go traffic. Of course she can only talk when she is stopped as it's against the law to talk on a cell phone here. She said they left the hospital at 3:00. It took almost an hour to get across the Bay Bridge. I don't know how people live like that. "I'm going 5 miles an hour now, so I'd better get off the phone." Oy.

We can talk on the cell here in AZ while driving but I like using the earpiece so I do not have to hold onto the phone while driving.
Glad to hear D is on his way back home.

Me too...happy to hear he can come home. He'll heal better and feel better there, I am sure.

A big whoopee! ;o) What good and promising news for Daniel and his family. I am very glad to hear he's home and hopefully on the mend.

Eileen ~ what a great interpretation you gave. Anyone can picture and understand what's going on by how you so aptly put it ;o)

I'm glad they were able to get it under control, hope all goes well on (and up to and after) the 16th.

Thanks. It's such a complicated disease. We still have hope that he can live a quality life. The biggest problem is that it took years to diagnose so he went without treatment until the very last minute.

Not that we blame anyone, it's very rare. We live rurally and once Daniel could no longer work, he lost his company insurance. His parents were able to get state insurance but it pays so little ($13.00 a visit) that many Drs don't accept it. UCSF is a teaching hospital so at least they get some benefit other than money but his medical bills are through the roof.

Three is in a pinch with her insurance now, too. Something must change. Our insurance is almost $800.00 per month. If we were to get too sick to work, we couldn't afford it. Dog chasing tail alert.