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Still Not Feeling Good 4 Months Later – Colitis to a Crohn’s Diagnosis

20 year old girl living with crohns diseaseIntroduction:

my name is Meagan -I am a 20 year old nursing student who was recently diagnosed with ulcerative colitis. 3 months after being diagnosed with UC my diagnosis has been changed to Crohns disease…
Symptoms:
frequent stools
Urgency
Heartburn
Stomach pain

My Story:

Hey ! I have an update I’d like to share with you guys ..recently my diagnoses has been changed to Crohn’s disease from UC and i still am in so much pain. Now I am taking 30mg of prednisone a day..40mg of prilosec for heartburn (the heart burn is still awful) and I am getting Remicade infusions every 5 weeks and seem to still not be feeling better.  Luckily the blood has stopped in my stool but I still have a lot of symptoms. My doctor so far has been excellent! I just wish i knew why i still wasn’t feeling better.  For me this disease came on so sudden- I was totally fine -working and getting ready to go back to school until all of a sudden I was really sick.At first we thought I just had a stomach bug ,but then all of my symptoms starting coming with the very bloody stool and I could not leave my house because I was so sick.  After 2 weeks of that I was admitted into the hospital for 2 weeks we have finally come to a diagnosis. throughout this whole thing my family has been so supportive and helpful.  I don’t know how I would have done it without them.  Has anyone had any similar issues or any advice? could really use it . It really makes me nervous at the fact that it has been 4 months and I am still in a lot of pain.Does anyone else feel the same way?Has Remicade been working well for anyone else ? Any tricks that have made you feel better? In a few weeks I am actually doing a walk for the Crohns and Colitis Foundation to raise money to find a cure-let’s hope we find one soon! if anyone would like to donate please let me know!

Where I’d Like to be in a year:   Feeling Much Better
Current colitis medications:
prilosec
prednisone
Remicade

written by Meagan

submitted in the colitis venting area





9 Responses to “Still Not Feeling Good 4 Months Later – Colitis to a Crohn’s Diagnosis”

  1. AdamMay 25, 2012 at 9:06 am #

    Hey Meagan,

    One of the earliest writers on this site named Ashley also went from a UC diagnosis to a Crohn’s diagnosis. You can read her stories here if you like:

    http://www.ihaveuc.com/welcome-to-my-world/

  2. Polly
    PollyMay 25, 2012 at 10:50 am #

    Hi Meagan,

    Sorry to hear about your current troubles!!!
    I also had some debilitating stomach pains, in addition to alllllllllllllll the other terrible symptoms that leave us under house arrest.
    The pains are most likely spasms in the intestine… My doctor recently explained to me that with GI disorders, the digestive system is unable to absorb calcium properly. He told me to drink Coconut Water (best brand: Vita Coco) and to take Flax Oil with GLA (Gamma-Linolenic Acid). You really have to check the ingredients, because it seems that 99% of flax oils do not have the ingredient GLA… so it’s hard to find, but totally worth it. I still do get the stomach pains, but not nearly as often or terrible as they were before!!! I’ve been drinking 17 oz of Coconut Water a day and 1 tsp of flax oil 3 times a day. It makes a world of a difference! Good luck!!! Hugs!!!

  3. california karenMay 25, 2012 at 3:28 pm #

    hi,just d iagnosed in jan and been hosp 4 times and lots of meds to keep track of nothin helping and yes i am a prisoner to my house. everything touches my lips emmediately is out in 5 min! was just put on asacol and dont know how long it will take and dicyclomine for the cramps and mesalamine. already on nexium and other stuff! and n0w their g0nna have me swallow a capsule with a video camera in it!

  4. AmosMay 25, 2012 at 4:16 pm #

    Hi Meagan,

    I have read stories of a number of UC’ers turned Chronies. A few of them have had surgery unfortunately which is sad. Imagine having your colon taken out thinking you are cured and then finding out . . . oops you have Chron’s and then flaring again. I personally think the idea that surgery is a “cure” is a little misleading. Anyway, sorry to hear you are flaring. Hope you get better. I will pray for you.

  5. OrdinaryWorldWhereRUMay 25, 2012 at 5:49 pm #

    I am on Remicade. It has made a big difference in my symptoms. I do still eat a very restricted diet but I only go 1 time a day and have little to no pain. I am technically not in remission but I am well controlled. I hope things improve for you. Best of luck and please keep posting.

  6. Meagan
    MeaganMay 25, 2012 at 10:17 pm #

    Hello everyone ! Thanks for writing ! I will say the remicade has defonately decreased my
    Symptoms since i was first diagnosed but I am
    Still not feeling well and no where near where i should be ..Does anyone drink coffee ? does it bother you? Ive been dyingg for coffee !! Haha . I hope surgery isnt where My next step.In a few weeks im
    Meeting with a doctor from MGH and i hope he can help me
    Feel better ! Im really looking foward to
    The walk im doing in 2 weeks to meet many other people who are going through the same things
    I am .

  7. JimMay 26, 2012 at 5:56 am #

    Hi megan. Sorry to hear about your disease but we have all been there and some of us might be going through it right now. For me remicade didn’t bring about a change instantly. I have been on it for over 6 months and will be getting my 9th dose next month. But I have noticed that eventually it does help.
    Regarding the tips. Coffee is a big no for me atlesst so I stay away from it. And you can also try probiotics for some people they really work. Good luck.

  8. Lara
    LaraMay 26, 2012 at 6:07 am #

    My story started out quite similar to yours. I thought I had a stomach bug. After I was admitted to the hospital, I got the UC diagnosis. A week later I had a Crohn’s diagnosis. And then the following week, I was back to a UC diagnosis. It was mentally draining to try to wrap my head around that, so I know how frustrating that can be.

    I’ve been on Remicade for almost a year now & am having good results with it. It took several months before the pain I had went away. I would say that you just need to be patient. I always used a heating pad when the pain became too bothersome for me. I also used it as an excuse to get new summer clothes — I lived in yoga pants & summer dresses for the longest time. :)

    Anyway, I really hope you feel better. I’m also looking into doing the walk for the CCFA in June. Hopefully we can both help to raise some money to help fund research into learning more about IBD.

  9. LindaJuly 13, 2012 at 6:01 pm #

    Meagan~ Like you, I had terrible heartburn. I tried everything. Then a holistic chiropractor dude suggested what seemed insane. He said I should take a sip (half teaspoon…) of Bragg’s organic unfiltered apple cider vinegar. He explained that the acid in the vinegar makes the valve between the stomach and the esophagus snap shut.

    I tried it and…IT WORKED. Now, I rarely have heartburn and if I do, I take a sip of the ACV and the heartburn is gone instantly.

    Make sure it is Bragg’s Organic Unfiltered Apple Cider Vinegar with the “mother” (stringy looking stuff that is beneficial bacteria. Usually less than $3.

    Good luck!!!!

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