Frogelita, Ivy and Fallcolours

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Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 11/9/2009 9:11 PM (GMT -7)   

How are you, ladies? I just wanted to check in and see how you’re going? How is the remi treating you Frogelita? Are you healing up nicely?


And Ivy? How goes my favourite Australian crohnnie?


As for me, I’m feeling the best I have all year (work is another matter all together). I have my 3rd remi infusion this coming Monday, and its my last loading dose, then I’m on the 6-week dosage. I don’t look at the fistula very often but it feels good and I can sit normally for the first time all year (!!) and its draining almost nothing at all, just a speck here and there (saving on liners!!). also saving on meds since I’m finally off all those antibiotics (I was spending $30 a week on them alone!). Taking biotin because the thought of hairloss freaks me out. haven’t noticed any (touch wood).


I have an appointment to get my seton taken out at the beginning of December, and the tube came out easily (!) a couple of weeks ago.


Looking forward to my first break all year in December. I don’t know how I managed to work through all those surgeries and the pain etc but I feel like I really need a holiday, weekends just aren’t cutting it anymore. I can’t wait to see my parents; I am dying to see them. So I have nearly three weeks off at Christmas time to relax in the bush and just sleep in and listen to the birds and lie in the sun and enjoy enjoy enjoy!


Anyway I really just wanted to check in and see how everyone is doing, not just Frogelita, Ivy and Fallcolours, but was wondering how you guys are going in particular, since you have been my support network all year.


Big Hugs






Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 11/10/2009 6:37 AM (GMT -7)   
I am so happy you are doing so well! I clearly remember the pure joy of being able to sit! Just sit without pain. It was amazing! I say a prayer of thanks everyday! Regular people have no idea how blessed they are that they can sit. And how disabling it is when you can't sit.

I am coming up on my third anniversary of my first abscess. What a long horrible two years that was! The last year I have been feeling better and better. The 6MP and vitamins D and B-12 really have helped me regain strength (I am allergic to remi and humira). The only thing that bothers me now is that every other month or so I get cellutitis around the fistula. Levaquin stops it easily but I am wondering if this will continue and whether this means I am vulnerable to more abscesses off of that fistula. I plan on seeing the new colo-rectal surgeon to ask him about the advancement flap procedure. I say new surgeon because my excellent surgeon moved to Boston. Frogelita benefited from his moving to her neigborhood! Anyway, I love my setons, but they are hard to clean without my shower sprayer. I find getting off to work in the morning and traveling away from home to be a problem. I don't like the odds of the advancement flap procedure, but I will ask the surgeon about whether combining the flap and plug increases the rate of success.

I am so happy the remi is helping you! All that inflammation really does make you feel crappy and I am glad the remi is working for you. Please go enjoy your vacation!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 11/10/2009 2:50 PM (GMT -7)   
That's good news, Phoebe. I'm really happy for you.

More on me another time - am feeling a bit sleepy for proper communicating right now :-)

I'm so glad things are looking up for you.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Jul 2009
Total Posts : 342
   Posted 11/26/2009 12:56 PM (GMT -7)   
scool  Hi Phoebe! Whats up girl? Thanks for asking about me..i am doing great. Now that my fistula is gone..i am almost 100% healed...and very happy. I have had three Remi far no problems. My next one is Dec 29th..and now i don't really need to take Pentasa anymore..the inflammation i once had in the rectal area is gone now. I don't think its going to come back. I am very happy..where my skin tag was removed seems to have healed nicely..i only get a small amount of pain sometimes in the rectal area..but its hard to figure out exactly where its coming from and my cyst that was removed has healed too. You know..its hard for an incision to heal when its so close to the rectal area..thats the part for me..that  is not totally healed yet..not sure how long it will take. But i am ready to go back to the gym..after months and months of feeling horrible. I am glad you are doing good. We all deserve to feel is tough enough and then to be sick. My only complaint today is my throat hurts..and i am nervous i might be getting sick...take care and keep me updated! Thank god for Remi infusions!!!!! :) hugs

 Crohn's Lupus Hyperthyroid..Pentasa Remicade Fistula tag removed!


Veteran Member

Date Joined Sep 2005
Total Posts : 769
   Posted 11/27/2009 3:30 AM (GMT -7)   

That’s great Frogelita!! I’ve also had three remicade infusions!! We must have caught up to each other! I had one, then one 2 weeks later, than 4 weeks later, then 6 weeks later, and my next one is on 11th jan, at the maintenance dose. Yay! I am feeling so good, its almost like I don’t wan to jinx myself by saying I am feeling so good but I really am!! I am looking forward to getting a new job in the new year, and I just hope this lasts forever!! When I think of how much I suffered day-to-day, trips to the toilet at night and day and excrutiating pain, it gives me the shivers. I just hope I don’t have to go back to that place, at least not for a very long time…..


I still have my seton in, the mushroom is long-gone and healing up nicely but the seton comes out mid-december!!


Sooo glad to hear you are doing so well!!

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