dlp252

I haven't had a bad experience, but I can add that I've had a good experience on Princess lines. I've sailed twice since knowing about my gluten intolerance, and they've been very good each time. Before the cruise I fax them a letter with my request for gluten free diet, and when I get on board, see the maitr'd the first day. Like another poster said, they'll go over the next day's menu with you and can make just about anything gluten free. THey even had pasta for me last time. It is MUCH easier if you eat in the traditional dining room with set seating and wait staff, but I've always had what Princess calls "Anytime Dining" and have been well taken care of. The buffet is risky, but if you befriend one of the staff there, they can point out what you should avoid, as happened on one of my cruises, so I was able to eat at the buffet with my friend who REALLY LOVES buffets, lol.

I haven't sailed Disney yet, but very much want to. The Travel Channel has a 1 hour show on the Disney line, and it looks like a great experience. The Disney folks are very knowledgeable about food allergies and Celiac.

I stayed at Port Orlean's in Disneyworld. They don't have a table service restaurant, but the food court had a head chef who was VERY helpful for me. They can make gluten free pancakes with real maple syrup. They were very knowledgeable about food allergies and about celiac.

In Disneyland, we stayed off property...fortunately I had good luck with that except for one day, but we ate mostly in the park anyway, and that was also a good experience.

Sorry Philibuster, I haven't any experience with that. I think in general a colon cleanse once in a while is probably a good thing, especially for those of us with bowel problems, but I have no data on that.

Yeah, I decided a while ago to not post too many details about what goes on with me. Which is one reason why I haven't posted the name of the procedure they did for fixing the floppy intestines, lol. It's an unusal word and if someone (like me) does a search on it this thread will come up.

On a different note. I was really sick again yesterday. My surgeon is referring me back to my gastroenterologist for more testing and to check the ducts. Not sure what is involved with that, but I'm thinking it's probably an endoscopy. I see him Friday.

Both of mine are just even with the joint. I don't have a formal diagnosis of Celiac because by the time I had the blood testing and biopsy I had been gluten free for 6 months, but I do have a diagnosis of gluten intolerance.

I don't want floppy guts. It's bad enough I have bubble guts everyday.

I would have never known I had them if he hadn't put that medical term for fixing it on my sheet of paper listing everything he did. No one has ever told me I had them. I DO wonder if that isn't the cause of some of my gut symptoms though.

OMGosh...RACHEL, you MUST go to Open Original Shared Link and look for "Death by Gossip"!!!!!!

It's the cutest picture of a little puppy with a cell phone in his ear, and you MUST read the little story.

No wonder I've never liked to date! I've never actually dated. I just end up in relationships without ever really going through the whole dating process. That stuff stresses me out!

Ha, ditto for me! I have never dated much...just ended up in relationships.

Fortunately, its only an initial shyness that I have but once I'm past that part and when I'm comfortable in my surrounding you just cant shut me up.

Ditto again! Only, I can talk to total strangers about nothing in particular easier than I can talk to someone I'm trying to get to know.

It's with great pleasure I say all of this because this time last year I didn't think I'd ever make it to another Thanksgiving.

I hope everyone is doing well on their path to recovery!!!

Oh YAY, this is AMAZING!!!! I'm so happy for you!!!

April,

Any stress can cause the adrenals problems. Good stress, bad stress, moving, too much to do, etc. I used to get that dizzy feeling you described all the time, but fortunately I haven't had it in a while (well except for right after each of my surgeries).

I think jello would kill me.

I LOVE it though.......especially with COOL WHIP. There are some things that are just too scary.....jello and cool whip would fall into that category for me. I'm just not that brave.

Yeah, I'm making my own jello with the recipe that Sherry posted. Although I HAVE eaten some of the store bought kind without problems, I don't want to eat too much of it...it's that bucket thing you were just talking about. I know it will eventually give me problems.

Pancreatitis is no fun at all! Did your physician perform ERCP? That procedure has a risk for pancreatitis as a complication. It is often used to diagnose Sphincter of Oddi Dysfunction. I am glad you are improving.

I don't think he did that. It's not listed on the list of stuff he did. Isn't ERCP some sort of endoscopy, or do I have that confused with something else, lol.

Is that Floppy Intestine Disease or Syndrome? Or, do they not have an official name for the condition yet? Well, whatever the heck it is, at least they fixed it. Those alien babies really do tend to warp wherever they are at. Does this remind anyone else of those Mucinex ads?

Ug, those Mucinex ads, lol. I don't think it has a name, lol. He just called it "floppy" when I talked to him. I wasn't written on the sheet they gave me of what they did.

Let me put it this way, I look forward to days when Dad goes back to work. Him being home for four days is horrible! That is just more housework. Plus, you cannot cook when gluten-eating freaks are running around the kitchen. This is not a safe environment to prepare food. Mom and Dad were not home last night until after midnight, so I got a brief break.

Yeah, it's no wonder you can't get much progress!

I had an thought this morning. Do i react to soy because of my estrogen dominance problem? I really think that is why i get an tingling tounge when i digest soy. I have never had gut problems from soy just anxiety and the tounge. So would that mean once my estrogen levels are lowered, that i will be able to have a little soy. I find it so hard to find things without soy, so this would mean alot to me. Or am i just dreaming lol.

Gosh, the tingling tounge worries me. That sounds like an allergy to me.

congrats on the weight loss. Did you soil yourself with some new EM makeup lol.

Ha, no, no new EM makeup, but I did actually put some on, lol.

Donna, this is fantastic news! I bet you are losing weight with all of this challenge, too. Hope you can enjoy your holiday dinners a little at least.

Happy to hear you've been doing better. Hope you have enough variety on your miniscule food intake right now.

Yeah, I've lost about 13 pounds. I can FINALLY fit into most of my clothes again, lol. I expect I'll gain a little bit back once I can get my calories over 1000...I've figured out that I'm only getting between 600 and 900 calories a day...definitely not healthy, but at least I feel full, lol. Even better news is that I can work out again. The doc gave the okay and so I've started with some brisk walks...my toe is holding out and I'm able to get in some really good walks. He gave me the okay to lift weights too, so I've been doing a little weight work as well. In a week or two I should be able to do some better aerobic exercise, and that should help keep the weight off.

I've expanded my foods to chicken, ground beef, green beans, white rice, potatoes, jello, fruit juices, applesauce, asian rice noodles. I tried an egg this morning, but couldn't finish it because it was sort of making me feel ill, lol. That's different than the pancreatitis attacks though...this is just an on again off again thing I have with eggs.

ROFL about floppy intestines! What a scientific term!!! Now I wonder what the downside is of having a too floppy intestine???

Glad you are feeling a bit better these days. What in the world is floppy intestines?

Yes Donna.....please explain to us!

I never heard of FLOPPY intestines ....but I think you must be right.....there almost certainly is an alien baby involved!

I think the floppiness must come from all of the abuse alien baby has inflicted over the years....the constant kicking and such. I would imagine after awhile we just end up kind of FLOPPY.

Makes sense that the floppiness might need attending to....like stapling or folding....or whatever it takes to make things less floppy.

Sorry Donna......I've had lots of FOOD over the past few days ....and so everything just seems pretty amusing to me right now....especially FLOPPY INTESTINES.

Well, I don't know what it is or why it's important, but I do know that I looked up the medical term for the procedure he did and it said "to correct excessive movement of the intestines". Not sure why exactly it's a problem, but I can see that it might be a problem, lol.

No need to apologize about eating lots of food...I can live vicariously through other people, lol.

Happy Thanksgiving to all!!!

Nice to see Jin again, although so sorry for the rough times!

Also very nice to see Rinne!!!

I've been doing well for a couple of weeks now. THe bouts of pancreatitis seem to be over although I'm still having to be careful what I eat and the doctor said not to add any fat until at least Christmas. I still can't eat much, but I'm slowly increasing.

Rachel...there was a procedure on the list of stuff they did during my surgery that I'd never heard of. I asked my doctor what that was...turns out my INTESTINES WERE TOO FLOPPY, so he did a procedure to tack it down! So, looks like I have (or had) alien baby junior, lol!

Welcome Mltjq!

Everyone,

I survived the CT scan, lol. Barely! I couldn't drink all the stuff today, but they did the test anyway. I had most of it down, but probably had 4-5 more swallows, and just couldn't do it. I'll know about the results tomorrow.

Sherry,

I made the jello last night and it's WONDERFUL! I made it with apple juice. It's not very sweet, but that's good for me right now with my touch pancreas.

I'm hoping he'll let me have at least full liquids tomorrow if my CT scan looks good, but I may still pick up some different flavors of juice tomorrow to make more jello, lol.

Donna, you can make your own jello really easily, with gelatin and 100% juice. The proportions are:

1 C juice to 1 T gelatin, 1/4 cold juice 3/4 boiling

So for 4 Cups of juice:

Sprinkle 4 T (I used a little less) gelatin over 1 C of cold juice to soften. Bring 3 C juice to a boil and add to the gelatin mixture, stir until softened. Add sweetener if you want, I add a little honey. Chill (takes awhile).

I had never done this before until starting SCD, and wasn't a fan of jello, but this is really GOOD.

Yes, pancreatitis is serious, I'm concerned about you.

WOW, THANKS!!!!! This is great! I may even have some gelatin in my cabinet! If not, I'll get some tomorrow.

Speaking of tomorrow, I have a CT scan. That means I have to drink the banana chalky stuff tonight before bed. I'm a little concerned about that, lol. Then more tomorrow, plus the dye they inject.

My doctor pulled out the pancreatic drain yesterday. He wasn't planning to do that until NEXT Monday, but he said that the drain could cause irritation and he felt that at 3 weeks, the internal stitches were probably safely dissolved. I can tell you that I feel MUCH better today. I felt a little worse last night (thankfully didn't have to throw up), but I'm not sure that wasn't because he pulled the drain. I ate 3 small bites of rice (which he said was okay), so that also may be it. Just in case, I'm not eating any rice today because I'll need all of my good feelings to drink that stuff.

Okay, off to see if I still have that gelatin...

HAPPY BIRTHDAY to one of my favorite beautifully made up virtual drinking buddies, lol!!

Happy Birthday (or Belated) to Sherry!!!

Still good so far this weekend. Today is a little more iffy than yesterday, but so far am able to keep my liquids down. I went to the store to get some jello because it's considered a clear liquid but is more substantial than juice or water, but sheesh it has a ton of additives! I probably should have waited to go to Whole Foods to see if they have an alternative without so many things. I won't eat much of it, but I may try a bite or two. My doctor said it was okay and I seemed to be okay with it in the hospital (only had it once though)...but I wasn't inflamed then, lol.

Sherry, I just read one of my medical books on inflammed pancreas and it scared me a little?!

Well, I was sick again yesterday. All day. It was worse than Tuesday and lasted a lot longer. I couldn't eat or drink anything after breakfast. Every time I tried to drink water it would hit my stomach like a brick and then I'd get that feeling like something rancid in there needed to come out. It wasn't nausea, but definitely wanted to come out and I did actually throw up 4 times (don't know how that is possible since I didn't eat anything).

I finally called the doctor's office and left a message. He called me about 6:40 last night, so I explained what was happening. He said my blood work looked pretty normal, but my pancreatic enzymes were a little high which might indicate that the pancreas is inflammed. I asked if something like organic cocoa powder could cause these symptoms because it wasn't the Advil since I hadn't taken any since Tuesday. He said that if the pancreas is inflammed, anything "rich" could cause my symptoms. By the time he called everything had calmed down and I was able to suck on ice cubes.

Ideally eating or drinking nothing would allow the pancreas to "rest", but then I would need to be admitted to the hospital for IV fluids. He asked if I wanted to go last night, but I wanted to wait to see if I could keep fluids down today. He's really worried about dehydration.

So far so good, but if at any time I can't keep them down this weekend he wants me to page him and he'll admit me. If I do well the whole weekend he wants to see me on Monday, so I'll have to call first thing on Monday to get squeezed in.

So, it's just me and my clear liquids again!

Thanks everyone!!!

Very exciting to hear that Rachel's friend is here!! Figured something was going on, lol!

I saw the doctor again yesterday just to make sure Tuesday wasn't anything serious. He's running some labs to check blood/etc levels and make sure there is no infection. I'm almost positive it was a reaction to the Advil I took that morning though. Anyway, he told me to call him any time I have anything like that happen again...even if it's after hours...he said to have them page him.

I drove myself to the bank yesterday to deposit a check and get some cash...got the okay from doc as long as I'm not on narcotic pain killers and feel like I could respond in an emergency situation, so since I'm only taking the prescription stuff at bedtime I thought I'd try. I felt good, but DO think a long trip would be out of the question.

My big excitement for today...possibly a trip to the store to get eggs. !!!

Hi everyone! I'm not even going to TRY to catch up, lol.

My surgery went well and all is benign! They removed the section of my upper intestine which had the tumor and then rerouted my bile and pancreatic ducts. They also removed my appendix, but thankfully did not have to do the Whipple so still have my gallbladder.

I've been doing VERY well...had a bad day yesterday...couldn't eat or drink anything, but it's better today.

OMGosh Paula!!!!! SHOPPING AND PUPPY!!!!!! If you added FOOD, you'd have my PERFECT LIFE, lol!!!!!

I am going to see about getting an endo and colonscopy. Im hoping i can find somewhere i can just do the pill cam, that way they can see every inch of my inside tract.

Don't freak out...the blood can come from a lot of different places. My colon was absolutely perfect, so the blood had to come from somewhere else. I agree that a colonoscopy and endoscopy might be a really good idea though.

I have no experience with the klebsiella (not yet anyway). Donna knows more about that.

I think Carla had it too.

Im wondering if i can eat cheese then, since this test was negative lol. I am dreaming, i know, cause of hte mold issue lol

...

I have been researching and im not sure if im learning more, or getting more scared by the moment,

Okay...put down the cheese and back away!!! You know, even if the test was negative, dairy and gluten are just hard for the body to process and if you're body is not working properly to begin with, eating things like that will just burden it further. Pssssttttt...that was my "motherly" advice meant with total love, lol!

If researching is causing more stress.....dont do it. You dont want to scare yourself. Dr. S. gave me that advice and it was good advice. Its good to research but not to the point where you're freaking yourself out.

Yes, I agree. When I first started researching my surgery it scared me silly, but at some point, the tide turned and it actually started calming me down. I'm the kind of person who likes to know EVERYTHING that might happen so I can be prepared for as many situations as I can...that helps calm me down, but if it doesn't work like that for you, DEFINITELY don't do it, lol.

i just relaized u had klbesilla infection also. What did you do for that.

I had Klebsiella and H.Pylori, so they treated the H.Pylori and not the Klebsiella...the treatment for HPylori was a prevpac which included two antibiotics and a proton pump inhibitor, so they said the antibiotics would take care of teh Klebsiella too.

I asked about doing teh test on your own because with the blood, I really think you should have someone you are working with. The found blood in my stool two years ago...I ended up being sent to a GI and having a colonoscopy and an endoscopy (which is how they found my tumor, lol, but THAT didn't cause the bleeding!).

Wow Paula! You did this test on your own right?

Dont forget that surgery is on TUESDAY.

!!! Yeah, I'm remembering NOW, but will I then!

Welcome Littlelymie! Your doctors are soon to be my doctors, lol. I see all of RAchel's "old" doctors.

Okay Rachel, I'm so excited about your new team!!! I'm definitely going to see Drs. T and P when I get through this surgery!!!