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[sassychic]

Hi..I originally wrote about my teen with Crohn's symptoms, back in the middle of Jan. My account was deleted because for some reason, the ADMIN thought it was a spam account....sigh...Im real.

My daughter had her colonoscopy on Jan 19. It was revealed she had Crohn's, Perianal. She was put on Pred and Flagyl and started the remicade on Jan. 25.
She was very ill. This past tuesday, not getting better, I took her to the ER and it was determined her potassium was extremely low, and her CBC was erratic. Not
feeling like her GI was doing enough, I insisted on my teen being transferred to a Pediatric GI. We went to a hosp 2 hours away and it was a smart move.

She was put on a feeding tube, which was difficult to witness. She stayed three days, and will be doing another Remicade trmnt tomorrow, then will wait a month.
She will then do a few more treatments, and in the meantime, she will be going on Azathiopurine also, once we get the bloodwork back.

She has an excellent, well respected doctor who feels that the 6mp drug is a better solution for my daughter. Has been around longer and with better known side effects.

Im so confused about all the treatments. It seems like any of the meds she is to be put on, Lymphoma and malignancy chances rise. I know it's a chance to take to ensure she has a decent quality of life. But Im nervous about the whole thing.

Any suggestions, or at least experiences on how to come to terms with all of this?:ybatty:

 

[Steve]

Sas,
I started taking 6mp last week. To be honest with you, when my GI suggested it, I was quite concerned, as you are. So I went for a second opinion and that GI told me the same thing. In fact, he told me that with all the known side effects of 6mp, they are really small and the side effects are seen farly quickly after you start it. Plus, they do blood work to monitor you every 2 weeks.
Something he said very interesting too - 6mp has been around for 50 yrs and they know how it works and know the long term effects of taking it. Its alternative, Humira is only around for 10 and thus not totally know. I'm rambling.
I came to turn like this - it doesn't pay to live until I'm 80yrs old if I have a crappy life. I'd rather get better, feel good and live life. Ill let g-d worry about the rest.
Good luck.

 

[Peaches]

Hey Sassy - sorry your account was deleted by accident. We get so many spammers and sometimes it is hard to keep track of who is real and who is not if you aren't reading every single thread on the forum - which you can imagine is difficult! Glad you came back.

I'm sorry to hear she is still having so much difficulty. Glad you decided to go for that second doctor. I agree with what Steve said about quality of life versus risk of side effects of meds. It is a terrible position to have to be put in - but none the less, a position she is in. The best thing is to get her disease as quiet as possible so she can get healthy again and try and live as normally as possible. I hope and pray that they can come up with more targeted meds that don't have such bad side effects - but we are playing with our immune systems on these meds and those risks are inevitably tied to it. Good luck and keep in touch!

 

[nogutsnoglory]

I take 6-MP at first you need your bloods checked every 2 weeks but after you are stable you can do it once a month. The other thing to watch out for is getting sick because of a lowered immune system. Make sure she gets her flu shots.

As for the long term side effects that is the downside of all these meds and why ideally I want to get off of them one day.

 

[Crohn's 35]

Welcome back.. there has been alot of nasty things putting the site down recently but glad you fought your way through and came back.

Just before the holidays I too had low potassium, it causes pain to the muscles. It is very dangerous to be low on them, I hope they gave her some supplements to bring it back up. We have a no sugar added Sunripe juice in a box, the Strawberry Kiwi has high potassium amounts, when she gets her potassium stablized it would be good for her a glass a day, not to mention the Vitamin C.

It is difficult to understand that all drugs even otc have side effects, because we are all different she has to see what works for her.

What is said here, staying on less invasive drugs in the beginning that does help her is good. Since there is no cure, we have to switch about and find out what works for all of us. My heart goes out to you, it is hard when your children are ill. Hugs!

 

[Fog Ducker]

Welcome back. Sorry they thought you were a spammer.
All these drugs seem to have nasty side effects, but as everyone else has said, they are risks I am willing to take for a quality life now. If I can live and function as normalas possible now and risk havng something bad happen in 30 years, then Im ok with that. Its better than the alternative of living a nice and long but crappy (literally) life.
Hope the 6mp works for her. Its too bad the Remicade didnt seem to help.

 

[tamesis]

Hi Sassy, welcome! I had the same problem with being thought to be a spammer, i just emailed and my account was re-opened. Glad you made it back here, and hopefull you can find tons of helpful information.

 

[shazamataz]

Hi Sass, and welcome back Sorry to hear about your daughter having Crohn's, I hope you find a treatment plan soon that works fro her and keeps her well.