Definition of Frustration - How a person feels when living with crohns disease.

[kate.flx]

Agreed?

Happy Holidays...

If it weren't for my aunt and cousins, this would not be happy time of the year. I'm so frustrated. Hell, these days, I'm always frustrated. My Crohn's has completely taken over my thoughts because it just doesn't stop. 5 days after resection surgery, I already have a new stricture forming. And I now have Pancreatitis. I got home after a one month stay in the hospital, yesterday. Today my doctor took out my NJ tube for the weekend to see what my lipase does with eating. This is the third try, pray 3rd try is the lucky try! Those tube suck so bad. And what they did to me was extremely traumatizing. If my lipase level is up on Sunday...the tube goes back in for a week. Yes, this time I plan on slipping a few Valium before hand...

The worst thing is, my body is very strange. Doctors don't understand, but I never have any symptoms and it is extremely dangerous. I have severe case of crohn's, HAD fistulas, abscesses, ovarian cysts, stricture, blood clot, and now pancreatitis. Want to know what symptoms I have had? One; abdominal pain.

No vomiting, no diarrhea, no fevers/chills, shaking, no unexplained weight loss. I only experience excruciating abdominal pain when I eat. But I haven't eaten in a month due to pre-op prep and now pancreatitis! So, no pain, I feel prefect! but I am a very sick kid. My doctor is very worried that my pancreas will try to digest itself and I will have no idea because I never experience symptoms.

Also, narcotics do not affect me. (I always wondered in 9th grade why I never got high off smoking marijuana! LOL) 6 times the normal amount of Versed for an adult, still didn't kick in for 45 minutes AND I REMEMBER SOME OF THAT NIGHT STILL!!. 4mg constant drip of dilauded plus 4mg boost every 10 minutes; didn't touch my pain. Neither did Oxycodone.

What to do, what to do...

 

[tiloah]

I am the same way with the symptoms. I am worried someday I will have serious problems and just not know it. So far I have been lucky though, I guess. Narcotics have never done anything for my pain, but they have made me extremely ill. I don't bother with them anymore.

I'll be sending positive thoughts your way that the third try is a charm. Hope you find some healing and comfort during this rough time. The forum is always here for venting purposes. Let me know if there's anything I can do.

 

[MADiMarc]

Dear Kate,
You are so young to be going through all this. What scares me is the pain meds. I sniff the bottle and get high it seems. They don't really take the pain away for me just make me more loopy than normal. Plus they just tear my gut up so I stay away from them.
I hope you find relief and wishing success with the procedure. I have never heard of an organ digesting itself so you have given me something to research.
:goodluck:
Michele

 

[Zalanicht]

All I can say is sorry to hear what you're going through again even after your resection!
Hopefully everything works out.
Have you asked about getting a TPN line put in instead of that tube down your throat?
I had my TPN in for a few weeks and it helped me so much letting my GI tract heal without anything in there while still getting sufficient nutrition.

 

[kate.flx]

Yeah I was on TPN and Lipids for 2 full weeks before surgery. Cause I wasn;t allowed to eat or drink anything for the full month. But TPN and lipids is very bad, and also is a factor for the cause of pancreatitis because with the PICC line, the fat is still digested (or processed, whatever) through the pancreas. It lets the bowel rest. Not Pancreas. The reason I got the NJ is so I could get nutrition while completely bypassing my pancreas.Friday labs were fine so I got to eat Christmas dinner, but todays labs were bad and tube goes in on thursday.

But very good news is my Crohns levels are perfect, thanks to only one dose of Remicade! Yay! My second infusion is thursday.

 

[Grumbly-Guts]

I hadn't heard of a pancreas "digesting itself either and I spent a month in the hospital with a lovely woman who had pancreatitis among other things and she told me everything. So i looked into it (medical stuff fascinates me), and whala, the first site I found said that "•Pancreatitis begins when the digestive enzymes become active inside the pancreas and start "digesting" it." WOW!
Kate, I wish I was near you to give you a hug! You're so young and should be out shopping with your friends, going to dances, dating, movies anything other than this. I really feel for you, I have been in this emotional (excuse my mouth) cluster-f@$k situation as well. (although thankfully w/o the pancreatitis)
Try and stay strong and keep coming here even if to only vent! I am new here also and have found this place somewhat comforting in my twisted head! lol But seriously, knowing that other ppl do exist with similar experiences doesn't make you feel so alone.

As for what helps, family, support, friends and some quality time for yourself. Call a good friend or grab your mom/sister whomever, get some movies and some cute nailpolish and get them to give you or take you to get a mani and pedi or maybe a massage (whatever helps you unwind). Will it make it all better...yup. It helps perk you up for a little while which results in you becoming recharged to fight again, besides it helps reduce some internal stress which we ALL KNOW doesn't help CD.

Hugs for you girlie and if you ever want to talk just msg me.

GG