What do i do?!!? :(

[SunshineSmile]

I'm waiting on the mayo clinic doctor to schedule my Double Balloon Endoscopy, but I've gotten worse the past few days.

Today I woke up to do my stool sample, and I know this is going to sound really gross probably, but I have D and it's coming out the way it came in my body... like nothing is digested. What does that mean?? Is there anything I can eat that WILL get digested you think??

I'm scared... I don't know how I'm getting worse so quickly, and I'm so close to getting treatment! I just gotta hang in there until I can get the Double Balloon Endoscopy done, but I just am scared, I've never had D and food not been digested before... things are obviously getting worse! AND I have this really bad taste in my mouth that will not go away, and that's not normal for me either... ugh...

Thanks for reading.

 

[handle]

Your guts sound like they need a rest (and you too!) Usually the liquid feeds like Ensure are useful in these situations - easily digested. Might get you through to the dilation and maintain you.
all the best.

 

[Cat-a-Tonic]

Sunshine, do you mean that food is coming out the other end undigested, looking the same as it went in? It sounds like that could be gastric dumping. I found this link, see if this sounds like what you've got going on.
http://en.wikipedia.org/wiki/Dumping_syndrome

It'd probably be best to call your doctor and let them know what's going on. They should be able to tell you how to proceed or if to proceed with the stool tests. Good luck, hang in there!

 

[SunshineSmile]

Yeah I'm going to try to drink some ensure and see if I can keep that down and if it does okay with the tummy. As far as gastric dumping, i'm not really sure. I hope this doesn't sound too gross, but I'm going to try to explain what it looks like....lol.
It's D, but you can see little pieces of food that I ate, like there were little pieces of tomato shreds which I had last night in my food, and there were little pieces of chicken, but it was all mixed with the D sludge ish stuff... eww. sorry

Doctor from mayo clinic's nurse practitioner just talked to my mom on the phone for like 30 minutes and said that she is trying to get things worked with the DBE soon, but to just try to stay hydrated. She was very nice to my mom and said that the doctor is moving fast. Hopefully I can get in soon!

By the way, went to my GI in orlando about the pill cam disk, and they said that they literally threw it away... all they have is 8 pictures out of 50,000!!! I asked why, and they said to save money and storage space.... Can't believe it. Oh well, can't do anything about it now. And I got all my records from the doctor who thinks i'm crazy lol. I didn't see him, but if I did I would of said something... I was reading through the records and he has notes that he wrote and it's unbelievable the things he said about me. Ridiculous... But I have bigger things to worry about, like staying hydrated, so I'm not trying to get upset about everything else. that's past history, this is now. And the now, is that I will be getting the best care that I can possibly get from the mayo clinic, just gotta try to hang in there for now.

I got a craft to do It's like an embroidery kit, with needling. It says it is easy for beginners, and since I've never done this before, I thought I could handle it. It looks soo pretty! So, I can't wait to see how it turns out.

 

[Grant]

Sunshine, are you eating unpeeled tomatoes. I take it you are having a balloon dilation because you have a narrowing or stricture. Not a good idea to eat stuff like that because as you've noticed it goes undigested & could cause an obstruction-which is very serious. Sorry if you know all this btw, just I've been there & have to eat an extreme low fiber diet these days. Really hope you can get through this. :hang:
Rgds
Grant

 

[Cat-a-Tonic]

I hope you can stay hydrated! If dehydration is a concern, there's a test you can do - pinch the skin on the back of your hand. If it snaps right back into place, then you're not (too) dehydrated. But if the skin takes a second or more to go back, that's a bad sign that you're dehydrated and should probably go get some IV fluids. If your hands or feet start to twitch or cramp, that's another sign. I've had that happen before - sometimes my fingers start to tingle, or sometimes my entire arm will start uncontrollably twitching. It's freaky! But it's a sign that I need fluids desperately. So keep an eye on things and please get IV fluids if you need to! I usually go to urgent care when I need fluids, they seem to be quicker, nicer, and less expensive than the ER.

I'm not sure if what you describe is gastric dumping or not - I've seen tomatoes in my stool pretty much every time I eat tomatoes. I think certain things just don't digest well and tomatoes are one of them. But I've never seen pieces of chicken in my poo so I don't know about that one. If I were you I'd mention it to the doc just to be on the safe side!

Have fun with your embroidery kit! I'd love to see a pic when you're finished!

 

[SunshineSmile]

Thank you so much Grant. I actually really don't know a lot about all this stuff, so any info that I can get, is greatly appreciated! I'll try to eat soft food, and just try to stay hydrated.

Cat, thanks for all the warnings! I"ll definitely keep an eye on it! And I will take a picture of my craft when it's all done, or when I get some of it done!

 

[Grant]

No problem @ all Sunshine. If you have as i suspect a stricture then really skins are a no no. Apples need peeling, potatoes never in their skins & tomatoes & also the biggest no no according to my specialist-mushrooms.
Take good care
Grant

 

[stella_luna]

Speaking as a stricture patient who has had several bowel obstructions . . . please also avoid nuts and seeds (even tiny seeds, like strawberry/sesame/poppy/etc.), besides veg/fruit skins. Also not good.

 

[SunshineSmile]

Alrighty so we got the DBE scheduled!!!! THIS MONDAY!! I have to do a prep though kinda like the colonoscopy prep actually.... ughh preps NEVER do well with me! We are driving up on Sunday morning, and then i'll do the prep sunday evening and then do the test on monday morning, and then he said he wants to meet with me on tuesday morning. So, hopefully be getting treatment plans next week!!! Just wanted to keep you guys updated!

 

[Carrie630]

good luck, Sunshine!!

 

[Mayflower537]

Hope everything goes well, Sunshine! Hoping the prep wont be too bad for ya.

 

[lostpanda]

Mayo Clinic

Hi SunShine, Just want to wish you good luck at the Mayo Clinic. The place has a good reputation for finding problems and offering hope and treatment. Don't get discouraged, if them folks can find the right meds for you, your world can turn from glum to hopeful almost overnite. Think Positive thoughts. Bob E from the foothills of Maine.