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Posted 4/26/2015 6:08 AM (GMT 0)
Tuesday, I went to my GI. He asked me if I was completely off the prednisone, which I am. Then he said the next step was a colonoscopy to see if I am healed, scheduled for June 5th, 4 days after my birthday. Yay. Idk if this is just how I will be from now on but I am not pleased with my current symptoms. I still having occasional cramping, gas, and irregular stool. sigh* once again disappointed. I wish I could see another GI that I feel comfortable with & can be listened to. My current doctor just totally blows me off & doesn't give me time to talk. Ugh. & don't say find a new one because I can't, I have to go to that one due to other issues. Getting so fed up & frustrated with this. Need some help. The emotional side to this is getting to me. 10x more depressed than before since this disease hit me.
Posted 4/26/2015 7:17 AM (GMT 0)
I'm not going to tell you to change doctors but I am going to tell you that you don't have to do everything he tells you to do. He is only in an advisory role. Do either of your parents join you on the GI visits? Educate yourself, figure out what direction you want to take, and then tell the doctor what is going to happen next.
Posted 4/26/2015 2:25 PM (GMT 0)
What I've learned about GI's and UC: they only care about inflammation they can see in a c-scope or biopsies. They care very little about symptoms (even life-altering ones) unless you get the rare GI who will try and help with those. (edit to add: they do care about bleeding).

No it's not right because symptoms are what we live with even if inflammation is showing low or even invisible.

Why don't they care? My guess is that there aren't many RX solutions for them to dispense and peoples symptoms are all over the place and don't all respond the same way. It sucks but that's been my experience in 15 years with multiple well-trained GI's. Only 1 cared enough to listen but it was up to me to try various alternative supplements/diet/etc to get my symptoms under control.

Maybe you'd have better luck with a nutritionist? I've never gone to one, it was DIY for me.
Posted 4/26/2015 2:35 PM (GMT 0)
In your situation bringing your parents along with you to the GI isn't a bad idea if you are going by yourself. The experienced and knowledgeable GI can easily intimidate what they perceive as a young and stupid teenager who should just listen to them and keep their mouths shut. Read up and educate yourself on the disease and they may have a new found respect for you, especially if you bring someone for support.
Posted 4/26/2015 2:37 PM (GMT 0)
If you just tapered off the pred....still having symptoms mean you're still flaring, albeit mildly.

Ask for mesalamine retention enemas.

q
Posted 4/26/2015 2:41 PM (GMT 0)
You don't have to switch docs if it's too much trouble but you can definitely talk to him about how you feel about not being heard, as long as you're putting it in a non-offensive way s/he may appreciate you saying so, maybe sometimes they just get really caught up in their stuff being busy and all with patients that they sometimes forget we are human and don't want to feel unheard or rushed.

Hope all goes well!
Posted 4/26/2015 2:55 PM (GMT 0)
When is the last time you scoped? U do t have to do that every time they suggest it. They do it to make money way too much!!! I always tease my dr that he needs another trip to paris???
Posted 4/26/2015 3:17 PM (GMT 0)
Agree with other posters that you don't have to do a colonscopy whenever the doctor suggests it.

I'd tell your doctor that you don't see any point to doing the scope until you feel closer to normal. Ask what the doctor will do if it says there's no inflammation. Is the plan to ignore your ongoing symptoms and tell you to come back in six months? Not acceptable.

From your posts, it's obvious you're doing a great job researching UC and trying to figure out how to get yourself better. That's amazing, but you can't do it alone! I'm a mom and there's no way I'd let my 14 year old child go to the doctor without me, much less to a discuss serious illness. You need an adult to help you advocate for yourself. If your parents aren't able to do that, do you have aunts or uncles, grandparents, even a family friend who can?

If you have the money, I'd suggest you try alternative treatments along with what you're currently taking. I've had great success with high doses of curcumin (costs about $35/month), probiotics ($20-$30/month), and resistant starch (very inexpensive and you can buy it at your local grocery). At the very least, try the resistant starch. It's easy to take, costs $4.25 for a bag that lasts three weeks.

But whenever you try something new, remember to start with a very small dose to see how your body reacts. And don't start two new treatments at the same time. If you do, you won't know which one is making you improve and/or feel worse.

Finally, if you feel very depressed, please ask a counselor at school for help. Depression can be just as serious a disease as UC and requires treatment via therapy and/or medications.
Posted 4/26/2015 6:21 PM (GMT 0)
Rather than a colonoscopy, ask for a flexible-sigmoidoscopy. The sigmoidoscopy can be done without sedation, and the prep is only two fleet enemas, way, way easier on you, and cheaper than a full colonoscopy is.

Doctors don't always get it, as they don't suffer with uc themselves. Be insistent, persistent, and you'll get what you want. My doctors visit isn't over until all of my questions are answered and concerns listened to, yours should be the same. If your doctor attempts to leave before you're satisfied, say: hey buddy I'm not done yet :-)

You should be able to call your doctors office and ask questions as well. Usually, I speak to a nurse practitioner who asks the doctor and calls me back.

Good luck Cassidy. It does get better, but not always as quickly as you or I would like it to sometimes. It took me a full 2.5 years to reach remission, an absence of uc symptoms and 1 bm a day. I went through many medications and treatments to achieve it, it was hard fought but won. I'm hoping you don't struggle for as long as I did.

How bad are your current symptoms?
Posted 4/27/2015 1:44 AM (GMT 0)
I thought a sig was as bad as a full one and i wont do thAt again!!!! Ever
Posted 4/27/2015 2:45 AM (GMT 0)
Agree with DMC about the flex sig. Even after taking a Xanax, that procedure was bad. It was hard for me to stay calm while knowing there was a tube making its way to my colon. Shudder...
Posted 4/28/2015 10:55 PM (GMT 0)
My mother does go with me, but she is even more scared to speak up than I am. I understand UC wayy more than she does which is so embarrassing to say but she really doesn't get it. Pretty much on my own. I've been depressed even before my UC due to some other issues, but my mom wont allow me to take any kind of anti depressants. Ugh. Guess I'm stuck with that but my UC is still bad. Symptoms aren't near as bad as before but still inconvenient at the least. I dont mind the colonoscopy at all actually, but I just want to find a medicine that helps me get into remission BC this isn't it as you all tell me. Thanks so much everyone for all the helpful advice. I'll try to gather all this for my appointment after my colonoscopy June 5.
Posted 4/29/2015 12:34 AM (GMT 0)
Just horrible. I was 16 when i started with bowel problems. It's really hard when you battle that and depression and have a non supportive or non understanding parent. I began just hiding my symptoms from my mom, friends etc and just coped on my own. My mom also had colitis so you think she'd be more understanding. Perhaps your mom is scared/in denial? Sometimes it's hard for parents to see their kid sick, but I'm sorry you're on your own.

Have you contacted the Chron's and Colitis Society in your location? Perhaps you can hook up with a counsellor through school or find local support groups. Often times they are free.

As far as anti-depressants here in Canada any child (no matter the age) can direct their own health without parental consent. Meaning a child of sound mind, who is informed, knows the risks and benefits of taking meds can take anti-depressants without parental consent. You also know the risks of NOT taking them. Your doctor can prescribe them and not tell your parents. It would be against the law for the doc to do so. (this used to be my field before I stopped practicing due to UC so I know what the laws are)


If you can't/won't get to counselling try various apps, like mindfulness, mediation, tapping (EFT) etc but I'd highly recommend expanding your support group. This disease is isolating enough and at such a young age it's difficult to go it alone.

I'm sorry you have to go through this.
Posted 4/29/2015 5:28 PM (GMT 0)
Thank you so much. All the support from this forum really helps. Can't thank any of you enough. I'll be sure to keep posting & updating on condition, medicine, symptoms, diet, emotions, etc.
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