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what was your "end of the rope"?

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Posted 10/30/2007 9:14 AM (GMT 0)
I'm just curious to know, at what point do you say enough is enough and give in to having a bowel resection?  I have good days and I have bad days.  My fatigue is fairly high, a couple of bowel movements per day, rectal pain (that resection will not help), abdominal pain that comes and goes and erythema nodosum on my lower legs that also come and go.   I'm in an odd perdicament because I have a history of cancer so I am unable/unwilling to take immunosuppressants.  Pretty much the only therapy I am able to do is take my Pentasa and go through bouts of steroid use, either prednisone or entocort.  As we all know the long term effects of steroids, I'm not real excitied about jumping on that wagon again.  In the last three years I've gained about fifty pounds, developed bone density loss that requires weekly fosomax, we all know what it does to your mood (evil) and during prednisone use my blood pressure was increased.  Now, please note I'm a 31 year old married mother of two.  My husband says this affects my family more than I even realize.  (the usual, I don't feel good  today comment) etc.  So.......does resection of my terminal illeum sound all that bad?  I don't know.......what is recovery like? How long are you out of commision?  Will it likely just come back to the same place? Plus, I'm scared of the what- if's.
Posted 10/30/2007 9:28 AM (GMT 0)
Wants Relief, has your dr recommended surgery? Susie
Posted 10/30/2007 9:31 AM (GMT 0)
Yes, in August after my colonoscopy she recommended having another entercolysis done to see how much of my small intestine/terminal illeum is affected. She could not pass the scope through due to the severe stricturing.  She said since I am not a candidate for immunosuppressant medications, surgery was pretty much my option.  In August I told her I didn't feel like I was "there" yet, however since some time in September, my bad days are becoming more and more frequent.
Posted 10/30/2007 11:17 AM (GMT 0)
Hi, I hope after your surgery. I hope you feel better. My prayers are with you.
Posted 10/30/2007 11:35 AM (GMT 0)
i have only been diagnosed since august and been on 3 different meds (possibly adding a 4th ones today, UGH). i was told i was going to need surgery at some point. when i have really bad days if i could admit myself to hopsital for surgery i swear i would! i just can't live like this some days, being in pain and popping pain meds and practically living in a haze. you really sound like a good candidate for surgery. and from some of the stories shared from people on here, they have had great success with resections and i only see this as helping you.

best of luck, let us know how you make out!
Posted 10/30/2007 1:52 PM (GMT 0)

Surgery should be reserved to when your quality of life becomes unbearable.  Now you sound like you are getting closer, but I want you to remember a few things.  You may have surgery and go right into remission, but you never know with this disease it could come right back.  I have had two resections and can tell you while I do feel better, my life has changed alot.  I can no longer eat anything I want.  I find that food does not move thru me the same anymore and I must stay on a low residue diet.  I get very nauseous very easily now.  My second resection was because of scar tissue build up at the site of the previous reconnection.  I have alot of scar tissue/adhesions inside and they give me quite a bit of grief too. 

Crohns wise I am doing pretty good, but I reminded now everyday that I have Crohns.  I use to never even think about it.  I am glad I had the surgeries because life really sucked when I was nauseous 24-7, but I am having to deal with a new set of issues now.  Surgery is not something to go into lightly.  You say you have good days and bad days.  I can tell you before my second resection everyday was a bad day, thats why I decided to go ahead with the surgery.  The first resection was an emergency, had no choice that time.  So weigh your pro's and con's and make the decision that is right for YOU.  Only you can say how bad your quality of lif is.  Good luck and God Bless!

Gail *Nanners*

Posted 10/30/2007 2:53 PM (GMT 0)
my end of the rope was not by choice. at the age of 20 i went in for an emergency resection. i didnt even know i was that bad, it seems nether did my doctor. now that i look back i can see i was. constant temperature swings from sweating to chills, constant infection. i could have died. after surgery i had a year in remission(i didnt keep the meds up like i should have after surgery) i have also noticed those things nanners has mentioned
Posted 10/30/2007 3:13 PM (GMT 0)
I didn't have a choice either. By the time they scheduled my surgery, my terminal ileum had completely closed off and I hadn't eaten a bite of anything in over 3 weeks. Only Gatorade and Koolpops. My surgeon said I was lucky it hadn't ruptured. (Oh, and I'd had a pill cam stuck for over a month.)
Posted 10/31/2007 12:45 AM (GMT 0)
Thanks for all of the replies.

Posted 10/31/2007 6:31 PM (GMT 0)
I ended up getting a fistula that connected to my urinary tract somewhere, they could not find where the fistula was, but undoubtedly, there was a connection. The gas coming from the wrong outlet, confirmed that fact. For me the last straw was passing liquid stool through the wrong anatomy....i'm a guy, but, male or female, I didn't want that kind of thing to keep happening. now I have an ileostomy...things are all better, but i haven't had to worry about the disease destroying my manliness!
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