Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm A Wreck...


Jenybeen

Recommended Posts

Jenybeen Rookie

I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

will be thinking of you and your son tomorrow.

let us know how he does, and you too Mom.

judy in philly

dlp252 Apprentice
I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer

Well, I don't have children, so I can't really say I know how you feel, but I just wanted to offer support, and to say that I DID have both procedures done at the same time...it really wasn't bad at all...the cleaning out process that he's going through now is the worst part! The IV was the next worst. The nurses and doctor were very kind and gentle with me, lol.

happygirl Collaborator

Jenybeen,

Good luck! I know it is hard. Please know that we are thinking about you and your son. Write and let us know how it goes. This process is frustrating, but you are being your son's best advocate and helping him lead a healthy life. Love him lots today....and we'll keep you in our prayers tomorrow!

Laura

jennyj Collaborator

You will be in my prayers. I know how frightening it is when a child has to have tests done. When my children have had tests and surgeries I just prayed alot before hand and took puzzle books or reading with me to TRY to pass time. Just make sure to take care of you too because he needs you strong.

TCA Contributor

I'll be praying for you both. My son has had 3 scopes and my daughter 1. I too was nervous, but they really aren't bad at all. We only had to leave them for the few minutes it took to do the scope and then was right back with them. It's pretty simple and will be over quickly. the worst part for my son was the IV, but that wasn't bad either. good luck!

Nic Collaborator

Hi, just want to offer that my son, 4 at the time, went through both procedures and was fine. They didn't even start the IV until he was completely out. The only discomfort he did have was the gas after the colonoscopy in which case he kept thinking he had to poop. I think he was more tired and frustrated that in any pain. Good luck, let us know how it goes.

Nicole


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I will keep you and your son in my thoughts.

I remember how difficult it is when it's our little one who has to undergo a procedure. I'm sure everything will go smoothly--I had both done the same day, and felt absolutely fine when I woke up and didn't remember a thing.

Try and relax, he's going to be fine :)

Jenybeen Rookie

We're home! And sooner than we expected, too. Isaac did really well. He screamed when they were placing the IV, but he was fine as soon as it was done. Watching him be put under anesthesia was the most difficult thing I have ever had to watch. First he was yawning, then he started screaming for Zachary (his brother), it was so weird. He was obviously hallucinating. That's when I broke down. I let my hubby hold him after that, because I just couldn't do it and I didn't want Isaac to freak out if he saw me crying. He was almost in a panic as it was. By the time he calmed down and fell asleep, hubby and I were both in tears.

After he was asleep, we went to the waiting room. My mom treated us to breakfast at the little cafe. I couldn't eat, of course, lol. After about an hour and 15 minutes, then came and got me, said he was crying for me. My hubby had to stay in the waiting room. On the way to go see him, the nurse said that he woke up right as they finished the procedure. I could hear him crying from down the hall. It was heartbreaking. He wasn't even fully awake, and was crying "Mommy, mommy" even though I was right there rubbing his hair and shushing him. I cried again. I didn't like seeing him like that all! He said he had to go the bathroom, so they unhooked him from everything and I carried him to the restroom and helped him. After that they gave him a popsicle and some stickers and removed his IV.

His doctor showed me some pictures and said that everything looked ok, except he had swelling in his small intestine. The took biopsies of the small intestine and his colon. We should have the results in 3 days. Isaac doesn't remember much, he just keeps asking me where I was when he woke up. He also keeps asking if I am proud of him because he was brave! So cute...I am. :-)

Whew! What an experience. I hope we never have to do that with any of our other kids. The procedure is a piece of cake, it's getting them there that's the hard part. I'll let you all know what we find out about the biopsies.

Thanks for all the prayers, positive thoughts and support!

Jennifer

lonewolf Collaborator

Glad that it went smoothly and that it's over! Hope you get some answers.

happygirl Collaborator

That is great! Its amazing how well kids hold up and he probably won't remember much about it. Life goes on. Its always us adults that worry!

Happy to hear everything went well. Let us know the results. xoox

AndreaB Contributor

I just saw this Jennifer.

I'm glad to hear that everything worked out for all of you. I can imagine I would have been a crying mess...I cry very easily.

I will be waiting for his results as well.

Yes, he was brave and did good. :)

dlp252 Apprentice

Glad to hear it all went well Jennifer! Hopefully this is it for testing for a while! I do think it's very scarey for the little ones to be in that strange environment, but I love his comment about being brave, that is priceless!!!

wolfie Enthusiast

I am so glad that it went okay! What a brave little boy!

schuyler Apprentice

I'm glad everything went well!

Suzie-GFfamily Apprentice

Hi Jennifer,

Glad to hear that it went well for your child. My daughter had her endoscopy/biopsy on Mon this week, and my son has his procedure next week. So we've got 1 down and 1 to go.

The IV was the worst part for my daughter- I expected that it would be and requested some lidocaine cream to apply to her arm before we went into the hospital on Monday (a tip I read about in Danna Korn's book). But she still got upset about having the IV put in. I just held her and kept telling her what a good job she was doing.

I also asked to have a TV for her to watch while they were inserting the IV- unfortunately, there weren't any TV's available but they got one for her to watch soon afterwards and brought a Clifford video (she's 5 yrs). A recent study found that kids reported less discomfort with medical procedures if they were watching TV.

My daughter was really funny as she came out of the anaesthetic (ketamine)- she kept telling everyone that they had 2 noses. I'm glad it's over and I'll be REALLY relieved once my son's procedure is done too.

Suzie

Nikki2003 Contributor

In july We put my 2 yr old daughter out and it really is the hardest thing. She didn't scream though. It was real sad because righht as she was going under she said in the faintest saddest voicve Mommy. I lost it and broke down. It took a total of about 15-20 seconds before she was out.she looked at me with the mask on and looked fine then the anesthesiologist looked at her and moved her quickly to the laying dowm position and she was out,even though her eyes were still open. I am glad it is over. But now my 7 yr old is most likely going to be doing the same thing probably in nov. Because she tested high for celiac also. Where she had the testing her nor should have been <4 and they were 32.?

Celina

Nicole

alivia

Nikki2003 Contributor

Hear anything back yet?

Jenybeen Rookie
Hear anything back yet?

Thanks for asking...been so busy I forgot to update you all. Well...we don't really have any answers, but this is what we know:

Isaac has chronic inflammation of the stomach and excessive stomach acid so he is being put on Prevacid. The colon biopsy came back ok with the exception of a high level of eosinophils (a type of white blood cell) which signifies allergic reaction, I guess. We think that means he is somehow getting something that he is allergic to in his system. We already know Isaac is severly allergic to milk and peanuts, he has been since he was a baby. I try to eliminate anything with even the tracest amount of milk in it, but maybe I am doing something wrong. And I know he isn't getting any peanuts...he wouldn't be breathing if that were the case.

The intestine biopsy showed no signs of celiac, but the doctor doesn't want to rule it out until the blood tests are back (which as of today, they are NOT and it's been over a week.) He said sometimes they could have gotten a "good" piece of intestine that doesn't show celiac, and there are good areas and bad areas. Something to that effect. The doctor said we haven't ruled out Crohn's Disease yet either, but with the biopsy, it doesn't look like it is Crohn's.

The doctor wants him to start drinking elecare, a milk substitute. He said the rice milk that Isaac has been drinking may have milk protein in it. I don't know how accurate that is though, because you would think it would be labeled on the carton and it says dairy free. Our main focus right now is to increase Isaac's caloric intake and control the stomach inflammation.

I am not satisfied with what we know...something is missing. I don't know what. I hope the blood results give us more of picture of what's going on. I just wish we could "fix" him.

Jennifer

Suzie-GFfamily Apprentice

Jennifer,

It must be difficult with nothing conclusive to go on yet. I hope they help you get the problem sorted out. It's hard knowing that something is wrong with your child but not knowing exactly what the problem is.

My son had his endoscopy/biopsy yesterday...... BIG SIGH of relief!!!!!!!!!!

It all went well. We'll get the pathology report back within about 2 weeks- but both my kids are starting their gluten-free diet right away. They both had very obvious changes that could be seen with the endoscope- in the proximal part of their intestines there was a lot of nodularity (lumpy, bumpy stuff) and pathes of red, inflamed tissue too.

My son was surprised when I told him that his proxmal intestine had at least as much nodularity as his sister's. She has some symptoms and he doesn't.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    4. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.