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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/15/2007 11:07 PM (GMT -7)   
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. 
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


SilverSky
Regular Member


Date Joined Dec 2007
Total Posts : 36
   Posted 12/15/2007 11:46 PM (GMT -7)   
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.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted Yesterday 7:05 AM (GMT -7)   
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!


 @--->--SHERRY--<---@
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
                       "The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted Yesterday 7:24 AM (GMT -7)   
Sherry you make so much sense...
             
 
Diagnosed with UP Sept. 2007-2nd opinion & 2nd colonoscopy confirmed UP, & UC old pain & new pain, it's spreading...Dec. 2007
misDiagnosed with Degenerative Arthritis, 2006
2 4 asacol 3x daily for UC/UP. 
Canasa suppositories, also 3x  daily,
3tsp. Donnatol every 6 hours, as needed
1 20mg tab aciphex daily
1-2 depacote 3x daily for bipolar disorder
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted Yesterday 7:47 AM (GMT -7)   
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??



Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica

Post Edited (princesscolon) : 12/16/2007 8:01:13 AM (GMT-7)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted Yesterday 9:48 AM (GMT -7)   
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.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted Yesterday 9:53 AM (GMT -7)   
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!
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted Yesterday 1:09 PM (GMT -7)   
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!!     :-)     


~Christie 
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Medications
Remicade infusions ~ Nov. 6, 2007,  Dec. 6, 2007,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg 10mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 units daily, Novolog 10 8 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.
                 
                                                     
 
 
 
         


chicagoatc
Regular Member


Date Joined Sep 2006
Total Posts : 133
   Posted Today 11:54 AM (GMT -7)   
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
29 years old; diagnosed since 1997 (but I've had it forever)
 
Current meds:
-Prednisone 15 mg
-Re-trying Imuran; I'm at 75 mg now.
-Asacol 12/day
-Failed Remicade (8/06-8/07)
-Calcium (for my steroid-affected bones)
-Prenatal vitamins (for the extra stuff, not for pregnancy)
-B vitamin complex
-Miralax (because surprisingly I need it sometimes)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted Today 12:48 PM (GMT -7)   
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.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks ( I may be developing antibodies?), Lomotil, Darvocet, Clorazepate, new meds: Prograf, Cymbalta, Lyrica


Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted Today 3:56 PM (GMT -7)   
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.
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted Today 4:48 PM (GMT -7)   
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
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 10:00 PM (GMT -7)   
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.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 12:49 AM (GMT -7)
There are a total of 2,906,380 posts in 318,949 threads.
View Active Threads


Who's Online
This forum has 158286 registered members. Please welcome our newest member, iiss99.
221 Guest(s), 3 Registered Member(s) are currently online.  Details
E5M, crazy007, CatLady18