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Re-introduction it's been a long two years...

Salutations and Greetings to all IBD friends!

It's been along two years since I was last on here. Illness has been a great distraction coupled with a toddler and family and trying to attend school and push through what I knew was coming and that was a brick wall. I knew I was starting to flare after the birth of my now three year old, but I am a fighter always have been and kept plugging along.

Well after two years in high gear trying to get as much done as I could and trying to maintain in what I now know had become survival mode...

I will break it down in those all too familiar medical terms we all are familiar with.

Humira stopped working...developed antibodies to the meds after almost ten years...developed psoriasis and now have the onset of psoriatic arthritis....yippee....stopped Humira July of 2013 due to it was no longer working to maintain the Crohn's.

Fistula's well let's just say DON"T ignore them!!!!! I went in for a scope and was admitted with a white blood cell count of 26,000 and a fever of 104.2. Fistulectomy with drainage seton's affectionately termed for coping as 'fillet o' butt cheek' but the Crohn's wasn't done reminding me how powerless we are when faced with this disease and when it's running rogue in the body.

Now let me pause for a moment I was trying herbal remedies and injesting copious amounts of Prednisone and anti biotics, coupled with Marijuana. I was also trying colloidal silver, all of these helped but were not enough. An uglier problem was growing in my belly and the pain was becoming 10++.

After the fistulectomy went home feeling better, then the pain WOW!!! Fantastic pain that doubled me over and prevented walking....trip to the local ER some morphine and a CT scan reveal yet another fistula and abscess. Called doc at Ohio State University and was admitted the next day, another week of hospitalization, and antibiotics, and a pretty purple pik line. I was sent home on IV antibiotics 4 wks.

Check up at OSU with GI, and the surgeon pops in the follow up and informs the PA and myself that I need surgery stat for a phlegmon abscess, and while he is in there he is going to take care a stricture at the terminal ileum which had left me with a 1mm wide opening and take care of the left side and remove that part all together.

The following Monday colonoscopy and the next morning I go in for removal and repairs.

5 hours later just enough colon left for re-attachment, and an ugly stoma affectionately named Fred by my three year old. Oh and another seton was put in place. I was also informed that a cancer protocol was done because the surgeon was concerned with some of the tissue which appeared cancerous rather than diseased. Fortunately pathology came neg for the cancer...whew and joy at that note.

So i am three weeks post op....
Start new biologic July 2nd Cimzia,
and some new Dr,'s to ad to my contacts list...

but mostly grateful thankful and relieved and in need of some love and support from the IBD community.
 
Hi Jessie,

Welcome back! (I've only just joined today...)

You've had a pretty rough time of it by the looks of it :(. Isn't it amazing how severe the pain inside your own body can be?

It looks like you're very strong willled by the looks of it but geez it looks like you could do with all the support you can get at the moment. I really hope that the wounds are all healing will post-op and you're getting some sense of normality back.

Also, your three year old is great at naming things.
 
Location
Texas
Welcome back Jessie - you certainly have had a rough time but looks like you have a lot of strenth to push through it. Do you have a good support system with your family? Thank goodness the pathology came back good!!

Good luck with the Cimzia - hopefully it will get you back where you were before all this mess!! :ghug:
 
Thank You Ali29. my immediate family is what I have, and occasionally Mom, but she lives in Kentucky.

It seems some days since my surgery all I want to do is cry, and other's be angry, and then the rest depressed. When I do have a good day it's almost as if I am manic lol.

I know I have the right to be sad, and scared, and angry, but sitting still is so hard for me to do. Only 4 weeks post op and well sigh sigh sigh...this too shall pass...but when.

I'm not one to be "godlike" and thump a bible but I am definitely wondering why now, why not sooner, why let me go head first into life get a career, family ect. to have it all jeopardized with this dilema?
I want to scream I want to yell and kick and throw an all out tantrum....
 
Location
Texas
I certainly understand your feelings. I know many of us have days like yours too, myself included. I know how hard it is to feel this way, I had to take FLMA in February and my GI has not released me back to work. I had a wonderful career/boss and had a very successful career (almost 30 yrs) until I came into this disease and all the things that come with it.

I do have a lot of faith and I also question why? I find comfort in the fact that I thought I was on a certain road but apparently I am supposto be on another one. I find comfort that my children are healthy and even though I don't get to see them like I want to due my limitations - there is a reason why I am here and in this condition - although I don't understand why.

My GI said stress can make this disease worse. So when I feel down I go through all the things that are in my life that make it wonderful. I also started a Bucket List - I love imagining doing these things on my list (brings down the stress a bit). Maybe one day I'll be able to do some of them but in the meantime - I'm just going to be thankful for the wonderful things I do have.

Sending healing thoughts and strength your way!! :ghug:
 
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