- Joined
- Apr 5, 2014
- Messages
- 264
Sorry if this is in the wrong forum (maybe should be Vent/Support) and I apologize in advance for the length 
but over the last couple months, I have made a complete 180 on my view relating to all this. I think I posted my story on here, but for a brief recap:
-Fall2009-transfered to a college in Miami. The dining hall food made everyone go immediately after...I mean pretty much everyone lol. We called it "Laxwell" instead of Chartwells lol. So that was a problem and I was bleeding. Ok. So March 2010, was prescribed suppositories for the bleeding, thinking it was hemorrhoids (sorry TMI!).
The frequent bathrooming stopped when I stopped eating at the dining hall (clearly it was the food). Though I suspect that started this all. Dang it, if only I hadn't transfered :tongue:
April 2010-Mid month began having abdominal pain. Mom advised me to go to the ER. I walked across campus to get there. CT scan and colonoscopy showed inflammation-ileitis was the discharging diagnosis. Left with Levaquin and a follow up appt in June back home in Tampa, FL.
June 2010-Entocort started as the Dr. said it was Crohn's. Aside from the abd pains, I thought I was fine! I was skeptical (no family hx, and it came out of nowhere) So he suggested to get the 2nd op in Miami.
July 2010-followed up back in Miami (returned to school) with an IBD specialist who wanted me to progress to 6MP. I was highly resistant, as I was terrified, esp with not having many "symptoms" from what I read online, heard etc.
So I ended up complying around October and a follow-up MRI E in Spring 2011 showed inflammation now in Sigmoid---they pushed for Humira. That's when I completely put the brakes. I think I was on Pentasa at the time...not sure if still on 6mp. But I went to Mayo Clinic Rochester in Fall 2011, and they found no trace of inflammation (prob due to meds). He said I could take 50 mg or re-evaluate if symptoms appear again. After he looked at the original biopsies, he said it was consistent I guess :/ but no reason for Humira. So see, my stubbornness works sometimes I guess
Spring 2012-Followed up with Mayo's sister campus here in Jacksonville...same thing of wanting to go on 6MP. Despite me feeling ok, was told to take 6mp.
Fall 2012-Spring 2013: Followed up with new GI in Miami, where to be honest, my compliance was spotty. Early 2013 I took myself off the 6MP thinking I was fine, that this was an infection or whatever (etc...insert rebellion, denial)
SO for the last 1.5 years, I have been completely fine off the meds. I forgot I had anything. But this year, I decided to just check how things were.
May 2014-F/U with Mayo Jacksonville. Colonoscopy showed some light inflammation. Told to go back on 6MP and to f/u here in Tampa. The first appt they had is August 27th. So in the meantime, I wanted to try alternatives (if you read my posts from back then, I was very into "the drugs are poison!!" mindset
Early June 2014-started LDN 1.5. I was having new abdominal pains, on the left side now, and upper right, which I thought were because of the colonoscopy (thinking it irritated things!). June 11th CT showed mild enhancement, lymph nodes seen by SI. June 13th started Entocort 6mg. (mirror image almost 4 years later to the day!)
July 2014-developed chest pain and palpitations so dr said stop LDN. I did. Palpitations continue so I tapered Entocort 6mg to 3mg over the course of 1 week (July 28th to August 4) then stopped. MY WORD if anyone needs a leverage to tell the difference, go on meds then stop
Abdominal pain increased, and i guess some urgency with soft stools. I have matured in the last year, but have matured so much over the last 2 months that I KICK myself for "disregarding" the experts over the past couple years. I even called Mayo clinic to apologize and ask for advice, since my new GI appt is August 27th. I will NEVER forgive myself if my illness has progressed in this timeframe. Ever. I wonder, why didn't I just comply in the beginning...trust wholeheartedly?? Then again, perhaps I may have been curious about diet and the alternatives (though it's only been 1-2 months I've tried them) but it finally clicked that inflammation can be just as damaging. And it scares me that in the colonoscopy they found microscopic inflammation in the ascending. I want to still be a mild case. I surrender. I want to feel like I did last year....which I realize was probably thanks to the meds that quieted everything. I'm so scared I'm "beyond" 6MP, which is a medicine I have finally come to accept. But most of all....I accept. Period. Would 3 weeks make a difference?! I'm almost 100% positive I will ask for 6MP August 27th. Ironic when I ran away from it all this time...
Any related experiences? Thoughts? Encouragement? I'm worried sick that I may have made things worse...if these 3 weeks could only speed up! I re-started Entocort 6mg today thinking the palpitations can wait; the inflammation can't. What a HUGE realization and maturation process...humbling too.
As comfort, I'm glancing through my past records and journaling of that time. Similar symptoms, maybe a little more "conscious" this time. I am praying things freeze. What would you consider a mild, moderate, or severe case?
Again, really really sorry for the length. This is the biggest and most important vent thus far I think. Thank you all SO much for being here. I bottle things up as I come home straight from work, and try to talk to my mom (but she has her own issue-diagnosed with Breast Cancer August last year)....part of me thinks I was in remission so I could take care of her So I keep all my worry bouncing around my head lol
but over the last couple months, I have made a complete 180 on my view relating to all this. I think I posted my story on here, but for a brief recap:-Fall2009-transfered to a college in Miami. The dining hall food made everyone go immediately after...I mean pretty much everyone lol. We called it "Laxwell" instead of Chartwells lol. So that was a problem and I was bleeding. Ok. So March 2010, was prescribed suppositories for the bleeding, thinking it was hemorrhoids (sorry TMI!).
The frequent bathrooming stopped when I stopped eating at the dining hall (clearly it was the food). Though I suspect that started this all. Dang it, if only I hadn't transfered :tongue:
April 2010-Mid month began having abdominal pain. Mom advised me to go to the ER. I walked across campus to get there. CT scan and colonoscopy showed inflammation-ileitis was the discharging diagnosis. Left with Levaquin and a follow up appt in June back home in Tampa, FL.
June 2010-Entocort started as the Dr. said it was Crohn's. Aside from the abd pains, I thought I was fine! I was skeptical (no family hx, and it came out of nowhere) So he suggested to get the 2nd op in Miami.
July 2010-followed up back in Miami (returned to school) with an IBD specialist who wanted me to progress to 6MP. I was highly resistant, as I was terrified, esp with not having many "symptoms" from what I read online, heard etc.
So I ended up complying around October and a follow-up MRI E in Spring 2011 showed inflammation now in Sigmoid---they pushed for Humira. That's when I completely put the brakes. I think I was on Pentasa at the time...not sure if still on 6mp. But I went to Mayo Clinic Rochester in Fall 2011, and they found no trace of inflammation (prob due to meds). He said I could take 50 mg or re-evaluate if symptoms appear again. After he looked at the original biopsies, he said it was consistent I guess :/ but no reason for Humira. So see, my stubbornness works sometimes I guess
Spring 2012-Followed up with Mayo's sister campus here in Jacksonville...same thing of wanting to go on 6MP. Despite me feeling ok, was told to take 6mp.
Fall 2012-Spring 2013: Followed up with new GI in Miami, where to be honest, my compliance was spotty. Early 2013 I took myself off the 6MP thinking I was fine, that this was an infection or whatever (etc...insert rebellion, denial)
SO for the last 1.5 years, I have been completely fine off the meds. I forgot I had anything. But this year, I decided to just check how things were.
May 2014-F/U with Mayo Jacksonville. Colonoscopy showed some light inflammation. Told to go back on 6MP and to f/u here in Tampa. The first appt they had is August 27th. So in the meantime, I wanted to try alternatives (if you read my posts from back then, I was very into "the drugs are poison!!" mindset
Early June 2014-started LDN 1.5. I was having new abdominal pains, on the left side now, and upper right, which I thought were because of the colonoscopy (thinking it irritated things!). June 11th CT showed mild enhancement, lymph nodes seen by SI. June 13th started Entocort 6mg. (mirror image almost 4 years later to the day!)
July 2014-developed chest pain and palpitations so dr said stop LDN. I did. Palpitations continue so I tapered Entocort 6mg to 3mg over the course of 1 week (July 28th to August 4) then stopped. MY WORD if anyone needs a leverage to tell the difference, go on meds then stop
Abdominal pain increased, and i guess some urgency with soft stools. I have matured in the last year, but have matured so much over the last 2 months that I KICK myself for "disregarding" the experts over the past couple years. I even called Mayo clinic to apologize and ask for advice, since my new GI appt is August 27th. I will NEVER forgive myself if my illness has progressed in this timeframe. Ever. I wonder, why didn't I just comply in the beginning...trust wholeheartedly?? Then again, perhaps I may have been curious about diet and the alternatives (though it's only been 1-2 months I've tried them) but it finally clicked that inflammation can be just as damaging. And it scares me that in the colonoscopy they found microscopic inflammation in the ascending. I want to still be a mild case. I surrender. I want to feel like I did last year....which I realize was probably thanks to the meds that quieted everything. I'm so scared I'm "beyond" 6MP, which is a medicine I have finally come to accept. But most of all....I accept. Period. Would 3 weeks make a difference?! I'm almost 100% positive I will ask for 6MP August 27th. Ironic when I ran away from it all this time...
Any related experiences? Thoughts? Encouragement? I'm worried sick that I may have made things worse...if these 3 weeks could only speed up! I re-started Entocort 6mg today thinking the palpitations can wait; the inflammation can't. What a HUGE realization and maturation process...humbling too.
As comfort, I'm glancing through my past records and journaling of that time. Similar symptoms, maybe a little more "conscious" this time. I am praying things freeze. What would you consider a mild, moderate, or severe case?
Again, really really sorry for the length. This is the biggest and most important vent thus far I think. Thank you all SO much for being here. I bottle things up as I come home straight from work, and try to talk to my mom (but she has her own issue-diagnosed with Breast Cancer August last year)....part of me thinks I was in remission so I could take care of her
So I keep all my worry bouncing around my head lol
