Phoebe how are you feeling?

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 10:49 AM (GMT -7)   
How are you doing these days? Are you feeling okay...? Wishing you the best...sounds like you have the worst abscess i have ever heard of in my life..i am praying for you!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2009 3:46 PM (GMT -7)   

Hi Frogelita, that’s so lovely of you to check up on me….. I think I’m doing pretty well overall I think, considering I am going largely untreated at the moment until I can apply for remicade. I have signed the paperwork and consent forms but they will not apply before the 1st September, because that is the 3 month bracket (means I have been in my dr’s care for 3 months) – so hopefully I should find out soon whether I qualify for remi. It’s been a long, long wait….. First with the abscess which wouldn’t heal and kept getting blocked (it’s been causing me hell since last November!), then the scary seton surgery, and then when it wouldn’t heal and there was leftover sepsis…… and having to have the mushroom tube inserted to get rid of the extra infection……. These days I avoid looking at my bottom, because it really scares me and I have to make a point of looking after my mental health, I had a pretty big breakdown a while ago at work, so I just have to be gentle on myself and try to stay calm and look at the positives.

 

So at the moment I am just on 6MP and hopefully will get remi soon……. Hopefully then my fistula might close? But I don’t even dare to hope….. its like the hole around the fistula (that has a seton through it) is stretching, and becoming larger, so I just don’t dare to look there anymore.

 

I had iron infusions about 6 weeks ago and so I am anaemia-free for the first time in 5 years, and that’s a fantastic feeling. I am so grateful to my new doctors, I am confident they will take great care of me. I am a little scared of the Remicade and the side-effects I’ve heard of, please keep me informed of how you go when you start your remi, Frogelita! And I’m also a bit anxious about my drain coming out because they will try and pull it out in the surgery but if it doesn’t come out I have to have another surgery.

 

My stymptoms at the moment are diahorrea (as always) and cramps depending on what I eat. I am trying to do the SCD diet but its kinda ‘easier said than done’ in a lot of ways! I am trying, though…..

 

I just want a normal colon and a normal butt! I get very scared about the future, that is probably my most daunting thoruhg, because I am only 23, but I try to not think about it…..

 

How is your new seton string going? Sounds so much nicer than the plastic! Are you still using the shower sprayer? I swear, that thing is a godsend!!


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/2/2009 4:15 PM (GMT -7)   
Glad you are doing better!!  And I totally agree -- just try to take my sprayer away from me!!!   skull skull skull
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.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2009 4:46 PM (GMT -7)   
Haha i can imagine it being a battle to-the-death! I am very protective of mine too, i am planning on visiting my parents in a few weeks and it's number one on my list of things to pack!

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 7:36 PM (GMT -7)   
Hi Phoebe..Hi Fallcolors...shower sprayers..are the best..yes it would be a definite struggle...can't live without them! I am really hoping that you get approved for the Remicade..in your situation..you really need it...you have been through so much..but it seems you are in good spirits..if i could..i would give my Remicade to you Phoebe..you need it more than me...wish their was a way I could make that happen..i am sorry that you have had to wait so long...and you have had your seton for so long as well and that mushroom drain...you should go easy on yourself...its hard not to get depressed about this stuff...i am praying for you everyday..that you can start the healing process..I am going to have to look up that diet you mention.. iron infusions are great..i had them once when i was pregnant and they truly work...and that alone will give you some energy back...I can't believe you have been through so much and you are only 23..too young to have to deal with so much...these drains make me nervous and anxious too..thinking about them going in and coming out..its too much..so the new seton i have...i have to tell you guys its great..its so small you can't even see it..and its thin like string..and its black..so it blends lol...and it works the same way..in through the anus through the fistula tract out the tract and then secures..its the tiniest knot you ever saw and it lays on the anus (i have been told as inflammation goes down....my body will push it out)...it is the desired seton i would imagine..because its so easy to clean...their are no sutures to clean around...and its a nonabsorbent material..think like plastic...i can't even feel it..except for if i tighten up my body and then if it hits against the inflammation the last seton caused..then i feel a little pain..but breathing deeply..i have learned how to relax those muscles..to relieve pain (its my new talent!) I bet one day Phoebe you will be a new woman..fistula free and the scars will heal up and just be an old memory...one day...it will happen:) take care and know that you are in my prayers!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa -Remicade in process

 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 9/2/2009 9:55 PM (GMT -7)   

Of frogelita you are so sweet, saying you would give me your remicade, hopefully I get it soon and so we can both see how it goes for us! It does feel like its been going on forever,…… when I had that big breakdown at work I ran into a meeting room which was empty at 8 am in the morning and called my dad and just said ‘do you think this is going to be my whole life??’ I couldn’t contain myself, I just kept crying and saying “it just feels like its going on forever!” ……. That was when I still had 12 weeks to wait to apply.

I’ve definitely been very down about it all, and the pain meds were making things ten times worse. It’s been a rollercoaster that’s for sure. I’ve spent most of the year in and out of hospital and surgeries and appointments and I live alone so I had to work the whole time too, and my parents live five hours away…... I just try and stay positive and think “well, I might have a bright red seton and a big ugly tube drain poking out my butt, and a ever-expanding fistula hole, but at least its not an abscess anymore!” I have to look on the bright side and believe that it will be up and up from here. I hope it is. I am sick of wearing panty liners!

 

I think although this disease absolutely ravages us physically and mentally, it can, in some strange way, make us better people, because we have to ‘grow up’ faster than most. I used to get mad when my co-workers would have a week off for a measly cold and I had a gaping surgery wound and constant diahorrea and pain to contend with every day, but I’ve realised, suffering is relative to the individual – for them a cold is bad, because they’ve never had to deal with anything worse. So they’re sooks. Ha!

 

The iron infusions have made a world of difference to me, having the energy means I feel more positive and able to tackle this thing. today is a good day, so I am feeling positive. Not all days are like this! I still cry a lot. But I’m working on it  :-)   

You’re seton sounds awesome!! I want them to tee me up one of those babies!! A string, so easy to clean, and so comfy! You could sit right on it and everything! Sounds great!!! I am so sick of this tube poking out my butt, it grew longer as it was pushed out from the gradual healing and I had to trim it with scissors because it was pulling every time I loved – which wasn’t fun! I guess I’m getting used to it now, I’m anxious about how hard it will be to have it out, and anxious about anything being put in or removed from there….. but we will see.

 

Oh, a fistula-free life, I can barely imagine it right now!! :-)


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/2/2009 11:26 PM (GMT -7)   
Boy do i know about the double to triple pantiliner situation..and where your incision is..a strange place to have a pad..must be uncomfortable..constant diarrhea..is the worst...that alone..would make me cry..i totally understand you crying at work..i have cried to my grandmother my husband..my daughter and cried by email to my parents...all in a few weeks! I do hope you can have a fistula free life soon...i really do..then you can get on with the things in life that make you happy...thank goodness for iron infusions..they are such a blessing! As soon as our fistula's are gone..we will be doing as my brother calls it..happy butt dances! Keep me update and let me know how you are feeling..best wishes to u

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa -Remicade in process

 

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