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Ulcerative Colitis
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Posted 6/9/2014 6:02 PM (GMT 0)
I have been asked to spend the week in hospital so that they can give me higher dosages of medications through and IV drip because my body isn't responding to any other oral medications.
Has this been a problem for anybody else?
It's a real pain because I am missing out on yet another week of school.
(I'm 14 and was diagnosed 4 months ago but I have had UC for at least a year, my doctor says. He can't get it under control with any medications and I have just been bleeding for as long as I can remember. I've had a blood transfusion and a colonoscopy + endoscopy and my doctor wants me to have another colonoscopy sometime this week)
Posted 6/9/2014 7:09 PM (GMT 0)
I had to be admitted for iV meds several times, unfortunately (not counting Remicade infusions). However, I was older and done with school so I can only imagine how tough and frustrating it must be for you right now.

What meds does your doctor want to put you on or increase? What have you been taking already?

Hang in there!
Posted 6/9/2014 8:50 PM (GMT 0)

ArPAr said...
I had to be admitted for iV meds several times, unfortunately (not counting Remicade infusions). However, I was older and done with school so I can only imagine how tough and frustrating it must be for you right now.

What meds does your doctor want to put you on or increase? What have you been taking already?

Hang in there!


I'm not sure what he wants to increase, but he has tried me on azathioprine (it made me very sick), sulfasalazine and prednisone. (sulfasalazine has made no difference whatsoever and pred made it a bit better in the beginning but not now)
Posted 6/10/2014 12:30 AM (GMT 0)
Your dr may want to put you on a IV for nutrition and give your intestines a rest from "processing". A couple of yrs ago I was in and they gave me something I think was called TNF that was pure nutrition and I was not hungry at all, but it gave my stomach a rest. As far as school is concerned, maybe you can take some classes via the internet, you know...online. There are so many other meds that are available, give it time....the hardest thing with this condition is to have patience with your progress. Hang in there...remember the alternative is not that great! You'll be in my prayers and kind thoughts.
Posted 6/10/2014 12:31 AM (GMT 0)
If you needed a blood transfusion already, it sounds like you are pretty sick. The hospital stinks compared to home but they will take better care of you than you could do by yourself at home. Many of us have been hospitalized in order to get IV drugs and although it can be scary you will definitely leave feeling better. Hope things turn around soon, keep us posted.
Posted 6/10/2014 1:48 AM (GMT 0)
I loved being hospitalized. I got IV fluids and steroids. Prednisone never worked for me, but IV steroids did. The blood stopped! And with IV fluids I felt clear headed for once.

It sucks being gone from home. And missing school... darn! Hopefully you can make up your work before end of the year or do summer school (not sure where you are located.)

But if you are this sick already, hospital can be a great place to be.
They may want to get you on something stronger for medication. Sounds like first and second line drugs aren't working. Maybe a biologic next? But hopefully the IV steroids start getting you feeling better so you can try something that will work!

Keep us posted. And good luck! :)
Posted 6/10/2014 11:54 AM (GMT 0)
i was just hospitalized for a month, so i know how you feel. it is so frustrating to be kept in this little room while life goes on outside... but this is rock bottom and it will end and you will get to leave and go back to school and do all the things you love again, i promise, this is only temporary!

like you, i didn't respond to oral steroids so they upped the dosage and gave me IV steroids, but that didn't calm my flare either, so they started me on remicade in order to avoid surgery. i've never taken any other medication for colitis, as it was pretty manageable up until now. i hope the IV steroids do the trick for you!

miss prim is talking about TPN (total parentarel nutrition)--they give you a picc line into your arm and the nutrition goes right into your blood and bypasses your whole GI tract, giving it a rest while at the same time giving you a baseline of what you need nutrition-wise. I was on it for about a week and I think it did help calm things down in my colon. the docs didn't want me on TPN for long though because they said it gives too much to the liver to deal with (since the gut isn't doing anything) and increases risk of blood infection. plus the doctor was adamant that in order to heal, the colon needs to be digesting food because it helps regenerate the lining and "re-teach" the colon how to basically do its job. but i did just finish a book ("the man who couldn't eat" by jon reiner--really good, a memoir about his life with crohn's) and he was on a TPN pump for MONTHS. if you are losing a lot of weight, they will probably put you on TPN, which is a good thing.

hang in there and keep us updated! lots of love out to you!
Posted 6/10/2014 9:44 PM (GMT 0)
I feel for you, and have a few things to think about for you and your parents.
School can be stressful and some are better than others at letting you make up your work. Even when out of the hospital, you won't feel 100%. Start the process of getting a 504 Plan-the school counselor knows what you need. It will legally protect you, and maybe allow for more time when you do standardized tests.
A second colonoscopy in a week sounds unusual. A person flaring does not change enough to warrant that invasive procedure so soon. Perhaps a sigmoidoscopy if they absolutely have to see things again. Most good GI's can tell what's what from your symptoms. If you are bleeding, they already know from the last one where it is coming from. Your colon sounds fragile.
Your medicines will help, but some take time-I am glad you are in a hospital where you can be watched and tested for other intestinal "bugs". Keep us posted. Ask lots of questions and write stuff down. Do you have someone with you?
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