Thank God, They Found My Problem At Last!

[MySuicidalTurtle]

celiac3270-withdrawl for a few days! Ahhh!

[kactuskandee]

celiac3270, that is fantastic news, and to think today you had surgery on the day of love...And I know you LOVE getting this done so you'll be rid of the pains.

I'd never heard of this surgery...she how you are always educating us?

Let us know how it went..we want all the details you can remember, ok?

Rest and get well fast, and don't take any gluten from anyone........but if I know you, you'll have everyone educated about Celiac and gluten intolerance that you come in contact with by the time you leave the hospital!!!

Hurry back...we need you!

Kandee

[Carriefaith]

Hope you're doing ok and that the surgery went well.

I hope that you are celebrating your 1 year gluten-free anniversary symptom free!

[tom]

Wow what great news. I got chills reading it. Good luck w/ the Grand Untwisting. : )

[momof2]

Somebody wrote "my favorite poster" and I agree! It seems that when I see his name on the post, I feel good about it being accurate! You seem like a nice guy! Glad to hear they found a solution! Good Luck in recovery!

[celiac3270]

Here's my update which I will complete tomorrow and copy to this thread, as well, I guess:

Open Original Shared Link

[celiac3270]

Monday -- Surgery Day -- The doctor told me I was very lucky to have gone 14 years without a serious problem. Any one of the hundreds of times I've been sick, my intestines could have coiled around a vein cutting off the blood supply and essentially killing an organ. I had to sit around in the waiting room all day until about 4:00 in the afternoon (since they were squeezing me in on an "emergency basis." In the procedure, they made three incisions--one in the bellybutton, one about halfway between my belly button and the left-most part of my abdominal area, one on the right. The incisions were small--maybe three centimeters each. They stretched out my intestines (side to side) as much as possible in the "LADS Procedure". They also took out my appendix since it's in the wrong spot as a result of all this and as a result of this, if I ever got appendicitis they would never find it--too dangerous so they took it out since it doesn't do much for me anyway. When I woke up I had a tube that went from my stomach through my throat and up into my nose and out into a container. They had suction on it so it was removing a greenish liquid from my stomach. The doctors said that since they had to touch the bowels and intestines so much, they sort of froze up. My throat and nostril got really sore from the tube over the next few days. I also had an IV of course, and some oxygen since I wasn't breathing as deeply as they wanted. The oxygen tube was removed a day later. I was in a room with a little child and I couldn't sleep much because to ladies on the other side of the curtain had loud childs music playing all night and were talking in Spanish extraordinarily loud--the way I might yell, or at least raise my voice--plus the child cried a lot. I got moved to a private room the next day by the nurses who felt sorry for me .

Tuesday, Wednesday -- Recovery -- They took the oxygen tube out, but the other tube hurt so much. I still wasn't allowed to eat or drink anything. The cuts weren't as bad as the throat pain...I had morphine to control any pain I had, but I stopped using it when I was told it could slow up bowel progress--I didn't want to sit there for days waiting. They moved the tube about an inch higher since it was a little low in my stomach--really painful. I sat in a chair for a half hour Tuesday, but it made me nauseous and dizzy. Oh, and I started walking Wednesday since that would also help me to recover and get things moving--with a stand of all the drips and pain meds.

Thursday -- I walked a tremendous amount (for post-operation)--49 laps around the floor, which consisted of four long hallways--with my stand of meds again . Still the tubes down my throat, but they were, to my relief, removed late in the day--due mostly to my walking-- and they let me eat a lemon ice (gluten-free) and a little chicken broth--hot water with an unopened package of "Herb Ox" powdery stuff to put in it--also gluten-free, of course.

Friday -- The doctors told me that I could start eating solid foods without any restriction--though I made sure to eat slowly and walk after eating to keep things moving so I wouldn't aggravate anything and need the tube put down again. 1st BM....lol....I'm not sparing any details. I did a lot more sitting in the chair--actually, Thursday I spent most of the day walking, second most in a chair, then the least time in my bed and Friday I was a little tired, but I sat in a chair again for most of the day. They disconnected the drip from the IV in my hand and reconnected it later to give me something else. I was extremely surprised when the doctors came in around 5:30 and said I could go home if I wanted to, since on Wed./Thurs. had been predicting Saturday--maybe late afternoon--and only that soon because I was so diligent about walking and sitting up and trying to recover.

[lisa922]

Hi, celiac3270 -

I'm not sure if you'll even see this message since it's been a few months, but I just wanted to say I'm very glad they found your problem and that I hope you have continued to do well since the procedure. I haven't spent as much time on this site as I used to and since I had read many of your earlier posts and troubles, I was very excited to see in your signature in another thread that you're finally feeling healthy! I went on a search through the old posts to find out what had happened. What a long road to travel to find the answers!!! I have been gluten-free for almost a year and am having a small bowel follow through tomorrow to see if the symptoms I still have are just your basic Celiac complications or if something else is going on. I guess I should be prepared to be there for a while, huh? Mine starts at 8, so maybe I'll be out by 1!! I'm not looking forward to drinking all the nasty barium...blech!!! Take care!

Lisa

[celiac3270]

Hi! Thank you for noticing and posting ! With the barium it all depends...since I had a problem and it wasn't going through, I didn't get out till around 2:00...and I was there around 8 or 8:30. It all depends, though...if you get there by 8 and it goes quickly, you could be done by 11...the barium is disgusting, but they'll put chocolate syrup in it to make it taste better (yeah, right) if you want. They happened to have Hershey's at my hospital so it was okay, but I would advise you to bring your own just in case it's a generic brand or one you haven't heard of. Just try to get it down quickly, however difficult it is. I shocked the nurses by drinking it quickly so I could leave early (but it took forever to get through anyway ). I just pretended I was on Survivor or Fear Factor or something where you have to eat or drink something nasty . Good luck and thank you again .

-celiac3270

[KaitiUSA]

I had to drink the barium too. It tasted a bit chalky but they gave me the strawberry flavor so it wasn't that bad. It took about 2-2 1/2 hours to do and they take xrays every so often to see how far it moves along. It's really not that bad. It gets a bit annoying just waiting around. Its ok though

[lisa922]

celiac3270 -

That was nice of them to try and disguise the taste with chocolate! I used to watch Fear Factor when it first came out for the thrilling, daredevil stunts, and then they started focusing so much on eating disgusting things that I had to stop. I thought I was going to toss my cookies every time it came on! I think they should do a follow-up on people who have been on that show to see how many have suffered irreversible psychological damage from eating crazy stuff!!

KaitiUSA -

Glad to hear yours took 2 - 2 1/2 hours instead of celiac3270's 5 - 5 1/2 hours! Hopefully, I'll be quicker, too. I hope your test came out fine. Were they looking for anything in particular? I think I've just been surprised because when I was diagnosed I thought the diet was the "magic bullet" and that all I had to do was stay gluten-free and I could eat whatever I wanted as long as it was gluten-free. It's been a bit discouraging to realize I have a whole bunch of limitations and still have a queasy stomach and stuff like that even though I've been gluten-free for almost a year and my bloodwork is now all negative. I guess healing villi doesn't fix everything!

Lisa

[KaitiUSA]

For mine they were just looking for any problems in general...They wanted to rule out Crohns especially because that ran on my dads side of the family and any other problems that it could be that it would detect...all turned out fine. To keep it going through me they had me walk around, do some jumping jacks..and it helped move it through quicker. It really wasn't that bad..I wouldn't choose to do it but I have had to do worse. If you are still feeling bad you may want to look at other things..check products and so forth to make sure you really are 100% gluten free. Also may want to consider probiotics, enzymes, and vitamins(i prefer liquid) if you are not on any already...Have you been checked for candida as well? Good luck

[gf4life]

My younger son had the small bowel follow-thru over a year ago when he was 7. He thought it was fun, since he got to choose between a chocolate and strawberry "shake" and then he got to "ride" the x-ray table that went up, and down and then tilted to where he was standing! He would do it again in a heart-beat!

My older boy has been having some problems since November and has just had the upper GI x-ray, and now might have to go back for the small bowel follow-thru! Now, why couldn't they have just done it all at once!

It isn't that bad. I think mine took about 2 1/2 to 3 hours, and my sons took about 2 hours. The floor at the children's hospital has colored squares on it and he was hoping from square to square around the hallways between x-rays! I was bored, but he wasn't! I think because he was so small it didn't take so long. No problems with him, but the doctor was worried about IBD. He is much better since going gluten-free.

Just make sure you drink a LOT of water that day after the test is done!

Kaiti, what kind of liquid vitamins do you use? Do they taste like vitamins or do they have a flavor added?

God bless,

Mariann

[celiac3270]

I got really bored walking the halls, so I can't imagine how bored my mom must have been. It was a very long hallway--at least the length of a city block, I calculated, and since it's 20 blocks in a mile, I walked easily over 10 miles waiting for x-rays to come back (they had me walking to make it go through faster). But that's what we do in NY...everything's so close that we walk ....

[KaitiUSA]

Mariann-

Mine are pineapple/orange flavored. They actually taste good and its 2 tablespoons of it a day. I take Liquid Vitamins Plus by Utrition. It says ultra absorbable on the front which is what I was after and apparently they have been working because I had a vitamin and mineral blood test done and all of them were in the normal range compared to before when everything was low due to malabsorption. Let me know if I can give you more info. about the vitamins

[strack2004]

celiac3270, I'm happy for you, too. It must be wonderful! If that sounds a little wistful, it is, I'm headed for Mayos on April 13 to see if they can find what ails me. Cheers, Ruth - Strack 2004. I see there is another Ruth who posts.

[strack2004]

celiac3270, I'm happy for you, too. It must be wonderful! If that sounds a little wistful, it is, I'm headed for Mayos on April 13 to see if they can find what ails me. Cheers, Ruth - Strack 2004. I see there is another Ruth who posts.

[lisa922]

You guys aren't going to believe this....I was completely done within about 1 hour of starting...the stuff was speeding through me like a runaway train! There was no walking the halls for me. Just had to sit up on the table for 15 minutes is all. They didn't do any of those cool things like tilt the table or anything fun like that!! Just had to lay down and have the little cone thing pressed on me. I guess that means I don't have to worry about having adhesions blocking anything!!

Kaiti - One of the reasons they did the test is I still get shoulder and right rib cage pains and feel like there is a separation between the upper half of my intestines and the lower half. I had my year anniversary test done and all the serology was negative, so that meant I was doing well on the diet. He did the test to see what is causing this other stuff. He was thinking maybe adhesions. There is also another option...I had my gallbladder out about 10 months before I was diagnosed and then right before they found Celiac, I also had a stone in my bile duct. The thing is, I never had stones in my gallbladder - it just didn't work. So...another theory is that my body is creating stones/sludge something like that when I eat too much fat and that causes the symptoms. That makes sense to me, especially now that I'm feeling like I don't have any adhesions after the test. Even though I eat very low fat, I've been more adventuresome lately. I guess I just have to behave. I had discovered that I could eat ice cream without the dairy consequences and I had been eating that a bit too often and that caused some flare-ups. I'm glad everything turned out fine on your test.

Mariann -

Your boys are brave!!! That barium is disgusting with a capital "D"! My youngest had her tonsils out and she was so brave to drink a lot afterwards even though it hurt. I kept telling myself if she could do that, then I could drink 2 cups of barium.

celiac3270 & all -

Thanks for your posts! I definitely thought about all the things my online buddies have written while I was sitting there sipping on my sludge. It made me feel not so alone!

Lisa

[celiac3270]

Great! I'm glad it wasn't too terrible an experience for you

Mariann--they did the tilting the table thing at the end for me, too

[gf4life]

My daughter (almost 5 at the time) and my son who was 7 then, thought the x-ray table was fun. They had their tests done only a few days apart, but only my one son had the small bowel follow-thru. My daughter was only having the upper GI done for vomiting and reflux. I was glad that my son was not as bored as I was! He was having fun, so it made it much more tolerable for both of us.

When I had mine done, it was the most boring thing in the world. I was made to stand and walk in the hallway in the horrible hospital gown in an area that was not separated from the general public and it was quite embarassing. I was also there by myself. It might be better to take a friend with you so you can walk and talk! I had no one there with me and it was the most boring day of my life. I had to carry all my stuff around with me also, since they didn't have a secure area for me to keep my things. So here I was walking around in the gown, carrying my clothes, purse, and a book I had brought to occupy myself, but I couldn't read it while my hands were full and I was walking around!

The test itself is easy, and the barium is not that bad though!

God bless,

Mariann

[lisa922]

Mariann -

I was happy that they didn't make me sit in my gown in the general waiting area, but then I quickly realized that there was a lot of traffic in the area I was sitting! I felt rather foolish and I'm sure I looked ridiculous. I was just glad it was so quick so I didn't have to walk up and down the hall! I had to bring my purse and tote bag with me, but I was lucky enough to have a locker for my clothes. I'm still so impressed that your kids handled their tests so well. That is super!

Lisa

[gf4life]

I'm still so impressed that your kids handled their tests so well. That is super!

Everytime I've been there with my kids there have been small babies there bafore us for the same tests! I am amazed that they can get the babies to drink bottles full of barium and then get them to hold still enough for the x-rays. They have told me that since the babies have to be without food for a while before the tests that they suck down the bottle with no problems! Amazing!

Glad your test went so well.

God bless,

Mariann