My chrons has been very painful recently

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I am 15 years old and was diagnosed with chrons about 3 years ago, my doctor prescribed me 750mg of pentasa twice a day. I was taking my medicine but about 6 months ago I kind of stopped. I didn't feel any worse or better than when I did take my medicine so I just went on with it. I've been taking my medicine for 2 weeks and have been feeling immense pain for a few days. The pain worsens when I get up and walk around for a bit, but if keep walking it usually calms down, and if I sit for a while it also calms down. I should probably go in for a check up with my GI to be sure as I haven't for a few months. I have been hospitalized before for a cyst and was wondering what you thought about this. Is it just some pains due to re introducing myself back to the medicine? Could it be another cyst or maybe it didn't heal up properly? If you wouldn't mind to give me your thoughts on what you think it could be

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  • Posted

    You better go for a colonoscopy. You also need to to be on diet. Eat yogurt for breakfast and before going to bed. Eat small meal and do not eat too much fibre.

    The sooner you go to see colonoscopy the better chance you survive.

    I am sorry for you are so young to suffer all this. May God bless. 

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  • Posted

    Hi Zaac

    Yep, time to see the doc. And be honest about the medication and stopping it for a while. It's actually really common for people to stop taking the meds when they feel ok. But sadly it can often bring on a relapse.......or it's possible that you're noticing side effects from the drugs which are also very common.

    Let your consultant know exactly what's happening and then they can better advise on a treatment plan.

    Might be worth asking if there's any counselling support for you. Having an independent personal ear to bend might really help you. Crohn's can be a difficult illness to talk about at any age, let alone at 15. It might help with managing the disease and understanding of how it impacts on your life generally.

    Good luck and keep us posted on your progress

    Hannah

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  • Posted

    Hey Zaaac,

    ?Glad to hear the Pentasa was working but sorry to hear things have taken a small turn. Crohn's is life long and you will need to be mindful in future, it doesn't get fixed just managed. Pentasa can take a couple of months to kick in. It is possible your Crohn's has started giving you symptoms again and the Pentasa hasn't had a chance to kick in again. 750mg x 2 is a relatively low quantity. Definitely see your GI and be honest. He may want to up your quantity to 2x 2g per day to help get you on your feet again - if he thinks it is the Crohns.

    ?Good luck amigo.

    Matt

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  • Posted

    I was on Pentsa for years. I am now on Imuran and in remission. I am not sure if the medication is what has helped me. But I am gluten free now and feel so much better. If I were you I would google gluten-free diet and try it. It can't hurt. Good Luck.

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  • Posted

    Heres what I think, (btw Ive had crohns sense I was a baby but was diagnosed until 2nd grade. im 16 now and take 500mg of pentasa 6 times a day. I havnt had any symptoms for a very long time). Obviously start going on your meds again and sceduale an apt. with your doctor. I think that your crohns probably started acting up again because you wernt taking the medicine. Pentasa is a preventative medicine so if you stop taking it after a little your bound to have symptoms again, trust me i learned the hard way. As for diet in the mean time, try to eat less fried foods, DAIRY is terrible for crohns, and less on the fatty meats/meat in general, also stray away from really acidic foods. (I remeber when my crohns wasnt under control I couldnt even have a sip of orange juice without it destroying my insides)
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  • Posted

    When I was first diagnosed my GI prescribed Pentasa, 8 pills a day. None of that sounded appealing to me, considering they couldn't even give me any sort of guarantee that it would work. Not to mention the Pentasa alone was over $1000 a month!

    I ended up finding an Integrative Doctor who wanted to try and heal it naturally, and use Pentasa as an absolute last resort. She ran a whole bunch of labs (none of which my GI had even mentioned as options) and found out I had 3 bacterial infections in my intestines on top of the Crohns. She also found out I had a gluten intolerance which severely exacerbates the Inflammation, as well as a fairly lengthy list of food sensitivities. Additionally, she discovered that I'm a carrier for mono, which thankfully it is not reactivated at the moment.

    Currently, she's treating me for another infection, H Pylori, as well as the severe iron deficiency anemia that they found at the same time as the Crohns. None of which I would of ever known had I kept going to my GI and been on Pentasa which would've done nothing for the infections they never would've known I had!

    Currently I am taking:

    Omega3 Fish oil

    Iron

    Magnesium Glycinate

    Probiotic

    Enzalase (for inflammation)

    Gastro-Mend (for the H Pylori)

    Glutalomine (glutamine and aloe, it's a powder)

    Vitamin D (had a severe deficiency)

    Eating:

    GF/essentially grain free, all I can have is white rice)

    egg free

    nut free aside from almonds

    can't eat many other random things such as bananas and pineapples and whatnot

    Since getting the food intolerance/sensitivities lab results about 3 months ago I've had essentially zero pain, no flares, and once my calprotectin levels hit under 100 (they went from 2700 to 1700 in less than six months!) then she says she will consider me in remission.

    Essentially what I'm saying is, while the heavy prescription drugs may be the only option for some people, it's worth experimenting with alternative treatments which offer, in comparison, almost no side effects. Also, everyone is different, so I highly recommend a food sensitivities test and base your diet off of that rather than what works for other people. (i.e. I thought for sure I was lactose intolerant, but it turned out that was one of the few things I had no negative reaction to!)

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