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Newly "Officially" Diagnosed-Looking For Others Who Really Need Support As Well


Sat, May 18, 2019 12:38 AM

Hi,

 

Just a bit of history about me.  I was officially diagnosed with Moderate to Severe Ulcerative Colitis 4/30/19, however I had my first symptoms or "flare-up" about 22 years ago.  I too had to see a Colorectal Surgeon, because of a fistula that had formed just inside my rectum.  It was so painful, and I had no clue about IBD at the time, of  course.  Not a whole lot seemed to be known about "IBD" back then.  I ended up having to have surgery twice on the same fistula, to properly drain, so that it would heal correctly.  

 

The strange thing for me is, once the fistula had healed, my dr. decided to do a colonoscopy (first one I'd ever had, because back then I was about 22 years old) and a few days after the procedure, I became deathly ill.  Had all of the symptoms for what we know now as Ulcerative Colitis/IBD.  At that time, my dr. simply called in Cipro and Flagyl for me to take for 10 days.  Thankfully, the antibiotics helped me, and I thought it was a one time thing.  Until about five months ago, when I started having similar symptoms that I had 22 years ago.  I was devastated after doing some research, because I knew that I had some type of IBD.  At least I believe after what I went through all those years ago, that remission is possible, and I can have it again if/when the right course of treatment is given to me.

My dr. recently prescribed Prednisone and Lialda, which I have not started either of them as of yet.  Honestly, I'm afraid of steroids, because of all of the possible and some probable side effects.  The other medication doesn't seem to have quite as many "scary sounding" side effects.  I know I have to start the medications, because this flare is NOT going to just go away or get better, more than likely without the medications.  Since I am newly, officially diagnosed with UC, I have been trying to research more natural ways to alleviate the symptoms, and discomfort and outright "illness".  If anyone reading this has had UC for a long time, and has any tried and true ideas or more natural treatments, please do let me know.  

For me, as I'm sure it happens to most, if not all of you with IBD, the flare couldn't have chown up at a worse time.  I was just hired at my dream job, and am close to getting my degree in psychology as well.  Being sick with UC has really made everything a lot harder to cope with and some days I feel like I just cannot get anything done.  I have all of the full-blown symptoms that can happen with flares.  The worst for me, is a combination of the all over body pain, or joint pain, the urgent feeling of needing to have a bowel movement, even when I don't always need to go, and the feeling that a hot fire poker is being driven into my colon/rectal area and stomach most days lately and all day, including into the night.  This, of course is affecting my sleep, and I can barely eat anymore. I would really like to be involved in an actual support network of people who have similar issues with their IBD. Reply if interested. Thank you. :) 


 

FPO MAS
Joined May 18, 2019

Sat, May 18, 2019 9:58 AM

Reply posted for Sakuramia.

Thank you for replying so quickly, and for the information and words of encouragement! smiley

Yes, it does sound like we have very similar experiences with IBD.  I totally understand about the heating pad too, that does help, for sure!  You are right about not being afraid to try medications for the illness too.  I'm glad I'm glad it's not just me who does NOT like taking medications.  

I'm not sure if you also have issues with certain foods/beverages?  I'm currently in a phase where I actually cringe when I feel hungry or "know" I need to eat something, because I haven't, and know I need to keep up my strength and nutrition.  That to me, is also extremely unnerving.  I woke up this morning with leg cramps, which I have NEVER had, probably because I have a potassium deficiency at this point.  Do you take multi-vitamins or anything else to help take in nutrients that our bodies need?  I need to get back on my daily multi-vitamin pretty quickly.

FPO MAS
Joined May 18, 2019

Sat, May 18, 2019 7:42 AM

Reply posted for MAS.

I get you, I’m somewhat similar. It’s great that you went a long time without anything bothering you for so long. Rectum/ colon/ pressure pain is the worst! I was keeled over this morning in pain. Part of that is it’s taking a long time for me to accept getting on a biologic. I’m starting next week after chickening out last time and switching choices. I HATE any meds. I don’t even like Tylenol.To go from a perfectly healthy person over night to this, and being on several meds is not what I want to be doing. But I’m suffering and my indecision and delay is making it worse and prolonging it.
Take what you need to for now, heal what you need to. I was afraid to take Lialda and that was completely fine (both oral and suppository). Also taking Uceris oral and that was fine, also taking cortenema. Long story short, all these were fine and helped for a bit, but the stopped working so now I need to get more aggressive with treatment. My doc said this type of Crohns can be resistant to treatment so we need to ramp it up and get it in check to have a better long term prognosis. This stuff never happens at a good time. I had to take my doctoral exam in so much pain and brought my own pillow, lol. It all sucks but we gotta get through it. Feel better! I always put a heating pad on my butt, I think it relaxes the muscles and that’s helpful.

FPO Sakuramia
Joined May 18, 2019

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