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Now I am considering surgery more but I am confused/scared

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Ulcerative Colitis
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Posted 12/16/2007 6:07 AM (GMT 0)
I am not jumping into it or anything.  But I am seriously thinking of surgery now.  Before I would do anything to save my colon, latley I feel like why?  what has it done for me, but made me sick?  I think I would like the ostomy and have my rectum removed.  I will try the Remicade one more time, and maybe Humira, but I am just tired of all this.  Twelve years of this.  And now the excruciating joint pains.  The surgery is sounding better and better.  The weird thing is my colon looks perfect.  I just have that one ulceration in my rectum. 
Posted 12/16/2007 6:46 AM (GMT 0)
Hi, Adrienne. If your disease is indeed limited to the distal colon or rectum (as confirmed by colonoscoy, I'm assuming), I would consider exhausting all enema treatment options over a prolonged period to ensure healing. I know it can be a pain, but these topical treatments have good results if we're patient with them.

Regarding the joint pains, there is a theory of thought that the extraintestinal manifestations (such as arthritis) does not always resolve itself following removal of the colon. In addition, you mentioned you have psoriatic arthritis and fibromyalgia which has an altogether different mechanism of disease and may be responsible for the joint symptoms you're experiencing.

I know this has been a difficult 12 years for you, but do give the enema's another shot. In particular, a combination or Cortifoam and Rowasa works well for many with protitis. Colostomy is many times reserved for refractory pancolitis patients or those with more extensive disease throughout the colon which is more difficult to treat with topical therapies.

Stay positive the best you can and good luck with your treatments.
Posted 12/16/2007 2:05 PM (GMT 0)
Adrienne, I think that after all these years of having this disease that one's colon can become more sensitive and even though we don't have nerve endings in there; the muscles or whatnot just can't handle it anymore or make or symptoms more pronounced even if visually fine. You have to do what you feel is right for you and if the quality of your life is highly affected then yes, you really should seriously persue the surgery angle. It is a tough decision to make and one with many uncertainties. I have seen many members have the surgery done on here thru out the years, and they come back in saying oh why did I do this?! I am in so much pain from the surgery! But then they come back a few months later and say Wow, I can't believe I waited so long to have this done! I feel wonderful!
Posted 12/16/2007 2:24 PM (GMT 0)
Sherry you make so much sense...
Posted 12/16/2007 2:47 PM (GMT 0)
I am not sure if it is really Psoriatic Arthritis or Reactive Arthritis.  My GI says it's Reactive.  Every time I get my blood checked, my white blood cellls are double the normal, from what I understand that means I have a a lot of inflammation in my body.  I don't want to take Rowasa anymore, I took them for months with and they did not work.  Then I tried them again and had severe headaches.  Three days ago, I started Proctofoam HC once again, my D stopped and I didn't have rectal bleeding for the first time in prob a year.  But, I started developing hives so the doc said to stop it.  I feel like my body rejects all meds!  I am getting concerned about my ulcer because it has been in the same spot for at least 4 years.  On bad days, I would say my quality of life is a 2 or 3.  I have D 20+ times a day, extreme rectal pain, also my rectum seems to close up (from the inflammation?) and I struggle to pass the bloody D.  On good days lately, a 7 because the joint pain remains.  Thinking back to the first time my GI said I had to have the surgery, I wish I would have said do it!  PS- My GI says the ulcer's edges look like it is trying to heal, but he also mentioned it is still possible for it to fistualte??


Posted 12/16/2007 4:48 PM (GMT 0)
Adrienne, only you can decide what's best for you, but it does sound as if you're coming to the end of your mental and emotional rope, and possibly running out of treatment options also. You sound like a woman who's ready to commit to surgery.

And surgery isn't limited to people with pancolitis. Before I was able to take Remicade, it was raised as a possibility for me. My GI kept saying, "I hate to see you have your whole colon removed for 21 cm. of disease, but we may be coming to that." So it is an option.

Just know that whatever you decide will almost certainly be the right thing for you.
Posted 12/16/2007 4:53 PM (GMT 0)
Oh, and I just realized you've given me a crystal clear measure of when it will be time for me to consider surgery. When I stop viewing my colon as a part of my body that I need to take care of and try to heal, and start viewing it as a malignant enemy inside me, it'll be time for me.

Thanks for your insight!
Posted 12/16/2007 8:09 PM (GMT 0)
I think it would benefit you to see a surgeon or better yet,  a colorectal surgeon and at least get a second opinion....it will give you a better idea of options available to you and the reason behind it.   Granted,  keep in mind,  a surgeon's mind set is set on "SURGERY",  but it does give you something to think about.     I am awaiting my appointment with a colorectal surgeon, but when I saw the general surgeon,  he gave me valid reasons to consider surgery, which sounds like:

  • age~ he said if you're relatively young,  you may want to consider surgery because every year you have UC,  your risk of colon cancer goes up!!
  • if steroid dependant
  • treatment options.   If you have tried all the avail meds,  and nothing seems to be working for you, its time to consider it. 
  • other chronic health issues.  I have diabetes as well,  and he said it would benefit me to not be on steroids (raises my blood sugars) and just the chronic inflammation of UC raises blood sugars too. 
  • a question of dysplasia in colon.  My last biopsy showed "possible dysplasia, but favor reactive changes",   but if even a question of dysplasia,  would be reason to possibly think of surgery. 

anyways,  one thing all the doctors gave me the impression of,  they can make recommendations,  but truly  the decision is mine (and yours) .  But,  its good to go into this decison with all options known,  and talking to other people that have gone through the surgery.  I know its a big decision, and stressful in itself!!  But,  hang in there,  and we'll get through this together!!     :-)     

Posted 12/17/2007 6:54 PM (GMT 0)
Adrienne,  I too am at a very similar spot to you.  This has morphed into something much worse than it used to be.  I have incontinence issues and steroids only help sometimes and then I can't get off of them, etc.  I failed Remicade, etc.  I too am contemplating surgery.  It makes so much sense in some ways.  I talked to my doctor about it and the only thing he said is that it does take away the UC but it's not perfect.  You can get pouchitis and you will still have frequent stools, and loose at that.  He said it sounds a lot like the symptoms you're trying to take away essentially.  But, it could be the choice for you.  I'm not discouraging either way because I know just how you feel.  Sometimes I think it would just be so easy to be done with this!  My doctor also said that he truly believes the medicines that are coming (humira, etc) will help people like me.  I'm choosing at this point to wait but to at least hear what the options are.  He also said if I were to have it done, to have it done somewhere like Northwestern or University of Chicago.  I don't know where you live but anywhere big that does a lot of the surgeries is apparently the place to go.  I hear you, I'm right about your age and tired of it too!  I hope everything goes well.  It never hurts to get a lot of info.  Hang in there!

Becky
Posted 12/17/2007 7:48 PM (GMT 0)
Dear Becky,
I am sorry you are in a similar situation. I feel for everyone here so much. I am seriously thinking of getting "the bag". I don't like the sound of the j-pouch. I am so tired of having a raw anus. I would love to never have pain there again. There are definitely issues with the bag too, though. Like if it leaks or I hate having it or something. I am scared I will regret it. But also think I may have more of a life than I have in 12 years. It is hard to imagine running around with a bag of poop on me, though. I know my GI has recommended the jpouch but it doesn't seem right for me.
Posted 12/17/2007 10:56 PM (GMT 0)
I had the bag for 2 months, and for a 20 year old, I gotta say I wasn't too happy. It wasn't the fact that it was impractical or annoying, because I gotta say actually, after going through having really bad UC, to going on a bag and not having to go to the toilet..its the best feeling in the world. As far as the J-pouch goes. It does take a while to get better and to get fewer bowel movements...but it does happen.
Posted 12/17/2007 11:48 PM (GMT 0)
For anyone contemplating jpouch surgery try to meet a jpoucher face to face before making your decision. I see GIs who over and over give their patients misleading information on life with a pouch. Pouchers do not always have loose stools. The vast majority of pouchers will not get pouchitis more than 1 or 2 times in their life. Frequency is not an issue as they make it out to be. I think I know why the vast majority of GIs do not understand life post surgery is because they do not have jpouchers as patients! Once surgery is done for UC it´s no longer necessary to see a GI. All they know of life post surgery is word of mouth and it isn´t the whole truth. And if any surgeon or GI recommends a partial colectomy please get a second opinion!

Sue
Posted 12/18/2007 5:00 AM (GMT 0)
my adivce to you is, if you are unhappy with life now, then have the surgery! i wish so much that i hadn't wasted so much of my life on that stupid colon!
I chose against the J-pouch because, honestly, i never ever wanted to go poo that way again! It was hard for me to come to terms with having a bag of poo hanging off of me too, infact that was one of the things that kept me from doing it. But really, i dont' even think about it anymore, i have had my bag since April and it just slips my mind most of the time. One thing you can do, is go for the j-pouch surgery, you will have to wear a bag for a while then. Then have the rest of the surgery, and if you hate the j-pouch you can back to the bag.
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