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Newly diagnosed and overwhelmed

Hi everyone,

My name is Megan( or FrozenGirl because I am always cold!). Here is a hopefully not to long summary of my story.

Symptoms started in August. Thought it was hemroids so I bought some cream thought it would go away. When it hadn't by September I got concerned and mentioned it to my mother( a nurse). We made an appt with my family doctor( who truthfully I never saw). She said it might be an IBD. Sent for bloodwork and did a barium swallow. It showed up inflammation and ulcers (started pantazoprol). Tentative diagnosed with Crohns but referred to GI. GI did a colonoscopy( horrible, pain and vomiting ) and endoscopy. Said it was for sure an IBD but he hadn't seen upper inflammation as previously seen. Started on Prednisone(20mg) and Mezavant (melsamine) 4.8g. Also found I was very anemic so started on iron plus Calcium and vitamin D. Based on Biopsy results he changed the diagnoses to UC. I recently had an MRI to try and figure out which ibd it is. Current medication still has me up at night multiple times to use the washroom plus stomach pain in evenings.

As a result the next likely step (waiting on MRI results) is to start either Imuran or Remicade. Both are a little scary and tapering prednisone freaks m out. I am very petite so the low dose of prednisone is seems high for my body. Overall rather overwhelmed and looking for some support. Thanks for reading this horrifically long thing.
 
Hello Megan

So sorry to hear what you have been through.
finding out you have Crohns is over whelming.

You are certainly on the right path for the optimal treatments available. Hopefully the Remicade will put you into remission. We were told Imuran is also an important part of that process.

After doing all the steps listed above, 2 years later, we are trying a different route for our daughter (now 15). Her Crohns or UC, is very similar to yours.

This weekend we are traveling to a GI that is going to perform another colonoscopy and MRE and start what is called the anti M.A.P treatment. It is based on the theory that IBD is caused from bacteria: Myobacterium avium paratuberculosis. It is worth adding to your list of things to research. I started a thread regarding my daughters treatment. As she starts the treatment I will make weekly notes to let everyone know how she is doing.

I wish you the very best and am glad you found this site.
 
Understand where you are coming from. I'm 2 years into the diagnosis and have had 2 infusions of Remacide recently. No weird side effects so far, but I do have a LOT of stuff going on, so not 100% sure it's fully working., but its improved things after a very bad attack so I think it is.

I'm on Mezavant, Imuran and Prednisone also. Beware of the Prednisone giving you weird feelings of anxiety and stress - it can do, so just be cognisent of it. It doesn't for everyone, but it's certainly not my favourite drug.

Main thing I can say is stay positive and make sure you have a good relationship with the medical team and that you talk to them a lot. Information is king, so all that you can get helps you process it all. It will get better.

If I understand your post, your diagnosis changed from Crohns to UC? If so, that is a good thing in my view, as it's more manageable long term. I know 2 people with UC, one of whom had it terrible, but both are great now. One from surgery and one from Remacide, so keep the faith and concentrate on not letting it get to you

Oh - and stay warm - I know how you feel - I'm the iceman since I got this..... :ylol:

Cheers
John
 
Hope, thanks for the support. Interesting thread. One of the issues with IBD is it seems we really aren't sure of much in regards to why or how we treat it. Sometimes it feels like a big guessing game.

John, glad to know I'm not the only one. I have noticed on the prednisone I often feel kinda snappy and more easily irritated which is frustrating. I like my GI but I would like to switch primary care doctors as I feel my current doctor doesn't really care. I am seeing my GI fairly often but it is frustrating that I just have to take whatever appt I am given in order to get one. It did change my GI believes but the MRI is hopefully the final determination of which I have. Thanks a bunch for the support.
 
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