Moderate Pancolitis + Remi/Surgery

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/3/2008 10:15 AM (GMT -6)   
Do most people with moderate-severe pancolitis end up getting surgery? If Remi does start working for me, am I just putting off the inevitable by not getting surgery? How much time should I give Remi to see if it will work before scheduling surgery? Has anyone heard about stem cell therapy for UC and how long it will take to be approved (assuming that the trials go well)?
 
I really wanted to have surgery when my flare started getting worse so I could be "cured"; I was actually pretty calm and excited about it. But as the time is getting nearer and I'm researching more, I'm really starting to get scared. What if I'm in that 10% failure rate for jpouch and I was better off keeping my colon? What if I have horrible incontinence w/ jpouch? The main thing Remi is helping with right now is not having to run to the bathroom. What if I have 10+ BMs/day w/ jpouch? On the worst day during a flare, I go up to 8 times; usually, it's closer to 5. What if it is found that I have Crohn's after having the surgery? I don't want wear the bag for the rest of my life!
 
To summarize, I'm freaking out! And I don't want to regret having surgery (which will happen if I end up having complications). sad
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/3/2008 10:22 AM (GMT -6)   
The only information I've seen is that 15-20% of people with UC end up needing surgery.

All of the things you mention are slim possibilities, as are serious complications from the drugs we take. As in most of life, there just aren't any sure things. At this point, it really sounds as if you have too many questions and concerns to proceed with surgery. Remember, you don't have to make a decision today, tomorrow or this year. Sometimes a few counseling sessions can help, or talking with people who have successful treatment - both surgical and medical.

Give yourself the time you need to really feel sure about your decision. That will increase your chances of success if you do have surgery.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 7/3/2008 10:27 AM (GMT -6)   
Judy,

The numbers are higher; 25 to 40% of UC patients either need or choose to have surgery. It could be because of a flare or from pre-cancer/cancer.

http://www.ccfa.org/info/surgery/surgeryuc

----------------------------------------
Medical treatment, generally with medications taken orally or rectally, is the first therapeutic option for people with ulcerative colitis. However, about 25 to 40 percent of patients with ulcerative colitis will eventually require surgery. Some people elect to have surgery if they experience chronic severe symptoms or if medical therapy fails to adequately control symptoms.


--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/3/2008 10:47 AM (GMT -6)   
It's normal to have a fear of surgery.

I have not met one UC surgery person who has regretted surgery, even those in the "failed" pouch category. Everyone states that there is nothing better than being in good health....finally, even if they had to lose their pouch to a permanent ostomy. Also, I don't believe there is a 10% failure rate; but it's a 90% rate that are satisfied with the outcome.

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


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/3/2008 11:13 AM (GMT -6)   
I agree with Sue, those who made the elective surgery choice aware of the reality of possible complication don't seem to have regrets.  And you may want to read what I posted in the previous post by Red title "I spoke to a Jpoucher" - I talk about my decision process and possible regrets.
 
I can't say for sure ComedyDork since I'm not a doctor and I don't know you personally, but you seem to still have more process to go before KNOWING that the surgery process is right for you.  For instance, read Reds comments, I sense a calm in her decision process, or look at this post by Kadet, by the end you can sense she is simply ready: http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/6011032092
 
Also, you may want to see a therapist, those well versed in chronic disease, have great coping tools to share about living with disease. We did plenty of therapy for coping at the different stages at it was always so beneficial. And mainly just helped give us tools so that we weren't so "confused" about it all.
 
Where are your parents on the decision process for surgery?
 
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/3/2008 9:09 PM (GMT -6)   
i know that you are scared about surgery and you should be, it wouldnt' be normal if you weren't That being said, and this is much easier said than done, you have to be able to work through that fear and come to grips with the fact that the surgery is going to CURE you. Now, if you dont' feel like you can do that yet, then you should try your other options, see if those help you. And i also dont' mean that you shouldn't feel scared at all, cause you probably will, i was so ready for surgery i was actually going to take it out myself if i couldnt' get a dr too, but i was still scared.
I know that you are worried about the j-pouch failing and that you will have to wear the bag forever, try not to look at that like a death sentence, i think realizing that wearign the bag is really not a horrible thing, will help you feel more comfortable with surgery. You may want to try to talk to a jpoucher and someone with a bag, just to help you feel better about the small chance you end up with a bag. You will have one for a few months between the surgeries anyway. And i promise you, it is not bad, not at all. YOu may even find you like it, lol. But you will be healthy, and that is all that really matters

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/5/2008 11:26 AM (GMT -6)   
Thanks for the replies.

I was perfectly fine and then it seemed as some switch went off Wednesday night and I started freaking out. I feel a little bit calmer today. Maybe I should stop reading the jpouch boards--I think I've gotten a good enough idea about complications; even though I know it's the minority that has problems, it's still making me panic. I mean, I was actually excited about surgery until I went there.

If Remicade doesn't work, I don't have any other options. My GI says Humira would be pointless since it's the same as Remi and there aren't any clinical trials in my area. I guess surgery is only an option if Remi works. I am pretty sick of this disease. I can't go anywhere in the morning and I'm so unbelievably tired the entire day that I can't really do anything but sit in front of the computer or tv, and sometimes I can't even enjoy that. I've only left the house to go to doctor's appts and volunteer once per week (which is in the morning so I have to wake up at 6 to be there at 9 due to DD). I know that this isn't the way to live.

If we had money for therapy sessions, I would have started a couple months ago. But the medical bills have been ridiculous for the last year. My parents are pretty set on the idea of surgery since they know it's the only cure and they want me to be permenantly better, and since Remi is probably not going work (and even if it does, how long will it last?). I've always been over-worried about anything and everything, so they try to keep me as grounded as possible.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 7/5/2008 1:46 PM (GMT -6)   
ComedyDork said...
 What if I'm in that 10% failure rate for jpouch and I was better off keeping my colon?
From my research there is around a 10% reversal rate not failure rate.  If this is the case then there is many reasons for having a reversal without it being a "failure".  I have heard some people have it reversed because of the j-pouch not meeting their expectations.  On the Mayo Clinics site they don't give the percentage of people who reverse because of severe complications they just have percentages of people who get pouchitis and they show that the longer you have the j-pouch the more apt you are to get pouchitis.  So after subtracting out the people who "elect" to have a reversal for personal reasons and not because of severe complications the percentage could be more like 5%.
 What if I have horrible incontinence w/ jpouch?
Even if you had incontinence with UC this is not a precursor that you wil have it with the j-pouch.  The incontinence with UC is normally triggered because of inflammation in the rectum.  What happens is the inflammation is so bad that any waste setting against it causes your system to expel the waste to get rid of the irritation.  When you have a colectomy the UC goes with the colon.  Pouchitis and cuffitis can cause temporary incontinence the same way (body gets rid of waste to stop waste from causing irritation) but it is normally easily corrected with a quick round of medicines and you are back to normal.  At least that is the way my GI explained it to me.
 The main thing Remi is helping with right now is not having to run to the bathroom. What if I have 10+ BMs/day w/ jpouch?
From having my ileostomy I can make an assumption with hopefully some basis in fact.  When I eat my ileo produces, when I don't, it don't.  I would then assume that a person would have an ability to control the number of bm's and when they take place by the timing of their eating.  At a minimum it should be somewhat predictable anyway.  From what I understand from j-pouchers the bm's are nothing like what you have become use to.  Since the waste has no ability to be real firm and such that it is more like urinating when comparing time and effort.
What if it is found that I have Crohn's after having the surgery?
Your doctor/surgeon will more then likely make sure that they feel confident that it is UC prior to proceeding.  My surgeon set it up for a three step surgery, if I choose, and that gave them time to send my colon to the lab to do more checking to go along with what biopsies and such they already have.  With the pathology, every test has shown UC.  If they would have found mine to be Crohn's my entire colon was affected so it needed to be removed anyway. 
 I don't want wear the bag for the rest of my life!
I can understand your concern here.  When a person, standing on the outside, thinks about a bag for the rest of their life only negative thoughts come to mind.  Since I have had the bag I am tickled with it.  Because of it I no longer suffer from the symptoms of UC (tired, pain, multiple trips to the restroom, incontinence, medication side effects, etc.).  I have possibly had an easier time than most with adjusting to it but I actually like the ability to completely control when I empty.  If I am going to a function where it might be inconvenient for hours to get to a restroom I empty just prior and I am good for a while.  If I don't want a lot of output into the bag, I slow down on eating.  Even if you were to have complications I would assume it would be many years before the doctors would come to the conclusion that you would need a permanent ileostomy, they would try all they could t get it to work for you as long as that is what you wanted.
 
With all of that said, I was looking toward j-pouch surgery when I started this process but have since started to lean toward permanent ileostomy.  With the research I have done I see that the j-pouch is almost as liberating as the bag but not completely.  The bag has just a little more "control" than the j-pouch and for myself I so far have not had any leakage and appliance issues (knock on wood).  Now, 6 months ago I would have never even entertained the idea of having a bag but because of all that has happened with my disease since then I enjoy my bag and don't think I am going to get rid of "Leo".  Each person has different circumstances that lead them to where they are, I just hope that some of what I said can ease some of the worry you have.  I think your worry is stemming from putting the possibility of failure out of context.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/5/2008 2:34 PM (GMT -6)   

ComedyDork,

Are you in school at a University, because the majority of universities have a counseling service that offers FREE services to students.  You should definately look into that. Here is a good video that will make you smile about the stages of acceptance in coping, it is funny but oh so true:

 http://ucstory.wordpress.com/2008/06/19/funny-stages-of-acceptance-video/

Also, yes, the jpouch.org forum is condensed version of what could possibly happen, and it is good that you are aware of the possible complications, but now you must not dwell on them.  Please do note, that on the jpouch.org forum there are lots of great stories, tons of support, etc...so if you do decide for surgery, you will find great support there (that is not negative but positive).

 

 


Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 7/6/2008 2:02 AM (GMT -6)   
I just went through surgery 4 months ago and had my entire colon removed and consider myself cured of UC. I had moderate-->severe pancolitis for a year. The initial flare never went away even with the large doses of prednisone and Asacol I was taking. My UC symptoms never improved after the initial year of drug treatment. I was up all night and going 20+ times a day. I felt my self slowly dying and was constantly confined to the house and sleeping all the time. Life at that point wasn't worth living, so I figured surgery and facing those risks would be better than how I was living with UC at that time. I waited a year with the medicine route and I didn't want to "graduate" to imuran or remicade (which BTW is classified as a chemotherapy drug) because I felt their long term "side" effects were worse than UC itself (like cancer-->instant death). Who know what taking that stuff for 50 years will do to your otherwise healthy organs.

I was in such bad shape from a year of UC and prednisone, that all that they could do for my first stage surgery was to remove the colon. I had extensive testing to rule out Crohn's disease before this surgery. A little fact missing on the prednisone drug sheet is that taking prednisone (or any steroid) long term (more than 3 months) turns your internal organ walls into the consistency of butter, therefore, they cannot hold the stitches or staples when they make the j-pouch. Therefore, my second surgery this September will be to make the j-pouch out of the small intestine (they wanted me to wait 6 months to allow the organ walls to heal back to normal after discontinuing prednisone), and a third surgery (3 months later) to reverse the ileostomy, although my surgeon said he might be able to combine these two surgeries into one. He won't know until he opens me up again.

Anyway, ironically, the way I'm living now is the "worst case" scenario if the j-pouch fails - having a permanent end-ileostomy (although mine is temporary now). Having a bag is actually very easy and not as bad as you may think. You can actually "control" when you need to go to the bathroom, there is no smell, other than when you empty the bag (and the smell is nothing worse than before-some people get fixated on that). Also, here are the benefits to surgery that seem to get left out. With UC, No colon = no more problems. The constant dull UC pain is gone, urgency is gone, you can sleep throughout the entire night (8+ hours), you are off all of the UC pills and their side effects, you are not wrecking your other organs with the drugs (i.e. liver, kidneys, bones), you can eat and drink everything, and you can travel and do just about everything you did before you had UC and you feel normal/healthy again. I even swim and hang out in the hot tub. For me, the bag thing was easy to get use to. I never regretted having surgery and would do it over again if I had to. The bag thing just becomes a part of life after a few months, just like wearing contacts. My energy levels and health have returned entirely back to normal. I'm as healthy if not healthier than I was before I got UC. You cannot "feel" that your colon is missing other than seeing the bag when you lift up your shirt. I empty my pouch every 3 to 4 hours during the day and before I go to bed and first thing when I wake up. I never had any leaks and I have a weekly routine with the pouching system. To me, I would recommend surgery to anyone who is suffering from UC or from the side effects of the medicines used to treat UC. Living with the "worst case" j-pouch scenario (pouch failure-->permanent ileostomy) is a million times better than what your experiencing now with UC. It bothers me that so many people are afraid of the surgery and suffer so long with this disease. If they could only go through what I have experienced, I would think they would come to the conclusion that surgery is really the cure for the disease.

The pain from my first surgery (open 10' incision in my belly) lasted about 4 weeks (where I needed pain killers). I then had a dull abdominal pain for about 6 more weeks. about 12 weeks following surgery, I could get around easily and not really experience any pain, but I did tire quickly doing any activity or physical work. about 4 months after surgery (where I'm at now), I'm back to my normal self...energy and strength wise. I can now work all day in the yard, cutting the lawn, weeding, transplanting shrubs, working on the house, and I still have some energy left over in the evening. For me, surgery saved my life and cured me of UC. I'm now glad that I can resume a normal life again without having to deal with all of the UC issues anymore. What is life if you cannot eat, drink and be happy!!!
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds including iron pills except Actonel and feel normal again
9/25/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/6/2008 5:42 AM (GMT -6)   
ComedyDork - Remember, Remicade isn't the only drug out there. Many people find greater success with drugs such as Humira or Golimumab as they are much newer/advanced drugs, and also have the bonus of being purely human - no mouse protein sequences. As such, they incorporate a great deal of newer learning as well as have a much lower incidence of side effects as the body does not build a resistance to them in most cases.

Although Humira is hard to get and Golimumab won't be available for at least another 12 months, there are other options. Give the Remicade a good 3 months before judging it. If it doesn't work, you might want to fight for Humira before surgery. Though of course, that decision is all yours. This is just my take on it :-)
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


rdm
Regular Member


Date Joined Apr 2006
Total Posts : 229
   Posted 7/6/2008 12:14 PM (GMT -6)   

You have only been diagnosed with UC for less than 1 year, it doesn’t really seem as if you have explored and exhausted all your treatment options, you are freaking out, you are 19. All these tell me you are not in the right space to make a decision about surgery. Also it seems you are in your first flare, it is often difficult to get the first flare under control, it was for me and that was nearly 25 years ago. My thoughts, and no one here can speak for anyone other than themselves, surgery is always in the back pocket it is an option but not a desirable one verses having a relatively well functioning colon.  So, do your due diligence by studying your disease, exhausting your treatment options, getting another GI if you are dissatisfied with your current one and I think this is very important seeing what level of discomfort you can live with because your bowel function will likely never be completely normal surgery or no, therefore we all need to come to terms and acceptance of this before making irreversible decisions.  Humans are very adaptable and it is possible to live with this disease and have a fulfilling life, the key being the understanding that the disease is not me that my identity is not wrapped up in UC. This and in addition reducing the symptoms to the level of a mere inconvenience and not something that my attention is always drawn towards is where all treatments need be focused.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/6/2008 10:37 PM (GMT -6)   
i don't think that how long you have had UC should be necessarily be a factor in deciding to have surgery. It depends on how bad the UC has been. And honestly, i can't for the life of me, figure out why i wasted even one day with the stupid colon.
I didn't try all the meds, and i had some people look down on me for that, but i personally was tired of living that way.
I think that with UC, quality of life is something that should be one of the biggest factors in deciding for surgery or not.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/6/2008 11:50 PM (GMT -6)   
Mark & Megan--I'm currently 4 hours away from my college, so even if they do offer free counseling, it's not an option right now! Oh, and I couldn't get that video to work--I think it said the video is no longer available.
 
John--I'm glad that "Leo" and the bag are doing well for you! Your experience makes the bag sound less daunting.
 
GISGuy--I'm glad things are working out for you as well! I can't believe your GI let you skip Imuran and Remicade! My GI wouldn't even let me talk about surgery until after my first Remi infusion when I said that it hadn't helped much.
 
Severin--My GI said that he would not sign me off on Humira and that there are no trials in the area for any new UC meds anyway. And I don't know if I can wait 3 months on Remi either...I'm not able to do anything now and I start college in a month and a half. And if I'm not better, there's no way I'll be able to handle classes. And my insurance won't cover me if I'm not in school; it will, however, cover me if I have surgery that's recommended by a surgeon.
 
rdm--I'm with summerstorm. I don't think it matters how long I've had UC or how old I am--I'm considering surgery b/c none of the meds are working. I've tried everything but prednisone, which is a short-term therapy anyway that I would have to use w/ other meds. I have exhausted almost all of my options. And this is my second flare. My first flare went into remission just by 6 Asacol tablets/day (ah, the good ol' days!).
 
I know that the risk of lymphoma is small when taking Remi, but I've read cases of people getting lupus from Remi--how common (or not) is that?
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda
*exploring the option of surgery
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/7/2008 10:44 AM (GMT -6)   
i dont know about the lupus, but i am suprised that your GI wouldnt' get you a consult with a surgeon when you asked for one. That would have made me awful mad! When i asked my GI about it the first time, he got me an appt with a surgeon, but he also talked me into trying remi, which worked for a short time. But i can't imagine why a GI would tell you he wouldnt' dicuss surgery, it's your body.
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