Good GI visit??????

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/26/2009 4:57 PM (GMT -6)   
hi everyone! I saw my GI today for the first time in a while- had my most recent Remicade infusion yesterday. Things are...alright. I have a bad week before & after the infusions, with a span of about 4-5 good weeks in the middle. When I say "good", I mean- approximately 4-6 daily, formed, urgent bm's, blood in some form every day, mucous, & I'm able to go about my business for the most part. With the occasional accident. My bad days are just that, bad.... 10-15 bm's, all formed though, blood, weakness, fatigue, etc. The meds I'm on are doing as much as they can- this is just what I get with them. Which is far better than what I got without them! His concern now is that I'm creeping up to the 8 year mark since diagnosis, & the colon cancer risk. Plus the fact that I'm basically in a constant, low-grade flare- it's never really gone into remission entirely- my current state is the best I've been since diagnosis. My colon has hundreds of pseudo=polyps, so the cancer detection will be extremely tough. I do give him kudos though- he not only talked about (and suggested) curcumin, but gave me some info on probiotics, & suggested I switch to a different brand than Culturelle. Here's the thing- we both feel the Remicade will eventually lose any effectiveness- I've been at the higher dose every 6 weeks for a long time now. I can give Humira a try if I choose too. His thing is, he'd hate to see me suffer for the next 3-4 years, only to have surgery eventually due to a malignancy. I'm just biding my time right now, in a holding pattern- he knows that, & is not pressuring me into surgery. But he has been recommending it for awhile too. what would you guys do? I feel like I'll eventually need surgery, either from a major flare that just won't quit, or a malignancy. It's kind of a downer... all these heavy-duty meds, & I still feel that way??? Why wait, then??? I don't know.. just venting, sort of, no one else really understands.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/26/2009 5:15 PM (GMT -6)   
I can't even pretent to give you any advice on this, as I'm so newly diagnosed and so far from having to make a decision like this. I guess I'm just saying that I'll listen to you (as I'm sure the others will) vent as much as you need. I find that it helps to write things down to really help me think through a difficult decision and to just be listened to, which is exactly what this forum can provide.
((hugs))
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/26/2009 6:30 PM (GMT -6)   
I'm not qualified to give you advise being newly diagnoses and all. For me though, I think I would elect surgery when I could take it no longer emotionally. I don't want to live my life to ill to participate.
I pray that your burden will be eased.
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 2/26/2009 6:39 PM (GMT -6)   
I wish I knew what to say but I don't. I totally understand your point and how you feel. I can put myself in your shoes, I feel like I may be in those shoes one day so I think about it often but I am not quite there yet. I am sorry you are still feeling like crap. I hope whatever you decide brings you toward improved health and happiness.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 2/26/2009 9:03 PM (GMT -6)   
Sorry that Remicade hasn't helped you to get out of the flare. It's tough having to deal with that, no question. At least your doc was trying to be helpful by recommending another probiotic. I think he is wrong, though, to keep bringing up cancer because you've had UC for 8 yrs. (Also pseudopolyps.) This is HIS insecurity. Granted, you have to get scoped, & you do. The quality of your daily life will guide your decision-making re surgery, I think, because you have a lot of grit, a good sense of humor, etc., that will enable you to sort things out. Best wishes! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/26/2009 9:26 PM (GMT -6)   
It sounds like you have a very thoughtful and informed GI.
My disease has also been a low grade flare, except when it's all-out flare. It's been a long, tiring road. If it is a good time in your life to go through the surgery, I would do it. I think you are probably right, this will otherwise always control your life when it doesn't have to be that way. And the polyps are not a good sign that your colon is going to hold out forever.
Good luck, peace
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30597
   Posted 2/27/2009 12:55 AM (GMT -6)   
I'd definitely go for the surgery long before exhausting the big gun meds.

I do believe in quality of life, not necessarily using up all my energy till I'm backed into a corner leaving no other choice.

you've already tolerated so much more, and then some, than I would before considering surgery.

The hundreds of polyps would basically scare the hell out of me...enough to say be done with it.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/27/2009 6:35 AM (GMT -6)   
If I were in your shoes? I would have the surgery.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/27/2009 6:41 AM (GMT -6)   
If I were you, I would have had surgery the moment that I had to increase my Remicade dosage. I'm just not comfortable with taking biologics long-term.
Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2009 8:18 AM (GMT -6)   
thanks you guys... see, this is it though- I feel my quality of life is pretty darn good right now! I mean, I do make allowance for my UC at times, but overall, I'm able to live a full life. The constant low-grade flare is just that, low-grade.... it stinks, not enough to cause any serious distress, but just enough to impact my life. I too am a little uncomfortable taking the biologics long-term. I honestly don't think I'll give humira a try, if it comes to that, but then again, I can't really say. Until it does come to that, ya know? I just feel like I will probably have to get surgery within the next 5 years- does anyone else feel that way? I don't think my GI is having insecurities about the cancer risk, but he does have to remind me of it. And I can see his point too, why go thru all the meds & the possible complications, only to have it out anyways? The whole thing just stinks! Big time! But today is another day, & I'll just have to keep going along & see how things work. My main concern is that even with scopes, because my colon has so many pseudopolyps, that detecting an actual cancerous polyp could be tricky. Plus, I tend to lean towards a permanent ileostomy, for the surgical route, & that is just a seriously HEAVY mind trip! I've been a little down since the visit- it was good, I like my doctor, but it certainly wasn't an uplifting visit!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/27/2009 8:24 AM (GMT -6)   
I also would opt for surgery if I were in your shoes. Since you are the healthiest you have been in a while your recovery will be much easier. It's best to have surgery when you're not too ill. I totally understand your hesisitancy though too. I think all of us who have or had UC are accustomed to living with compromises. You say you don't feel that bad but I would guess your life does revolve around UC. Your quality of life may be better than it's been in the past but are you living a life as full as you did prior to your diagnosis? I think you would be shocked to see the difference in your life post surgery!

BTW- I know you are leaning towards a permanent ostomy but have you entertained the idea of a k-pouch?

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2009 9:08 AM (GMT -6)   

you know Sue, I haven't thought much about the k-pouch- mainly because the facility I would go to, the Lahey Clinic, in Burlington MA doesn't seem to do that many. I won't travel too far for surgery, for a # of reasons. The post-op visits would be a nightmare, if there are any complications I'd like to be a couple hours away from my surgeon, & plus I don't know anyone who has one. And the thought of irrigating myself just gives me the creeps- I'd much rather have the poo just drain out on it's own volition! Ha, ha! It's foolish to wait until you need surgery, I realize that. I have no doubt either that I would probably feel about %100 better overall post-surgery. But it's like quitting smoking- you know it's the right thing to do in EVERY way...but you still say "Tomorrow, I swear!". I have to say though, that doing a lot of reading on the ostomy forum here & the jpouch forum have really put my fears to rest- now it's just overcoming the mental hurdle.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 2/27/2009 10:34 AM (GMT -6)   
Why would you be more worried about taking Humira vs. Remicade? I don't know too much about either drug but I've always thought they were on the same level as far as longterm effects. I see the commercials for Humira/psorisys all the time and I guess that has made my brain see it as less detrimental to future health than it may actually be.
 
What about LDN? Would that be worth trying? I know you also have the polyps, that makes the decision to prolong treatment that much more difficult. If you will not be able to keep your colon indefinitely, maybe it's not worth risking your health with all these crazy drugs? I hope you figure out the best decision for you. I think surgery could be very liberating, you wouldn't have to worry about pills and you might feel 100% better, it will just take some time and healing.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2009 11:48 AM (GMT -6)   
I'm not more worried about Humira vs. Remicade, necessarily- the idea of jumping from biologic to biologic to biologic over the next decade is what doesn't appeal to me! There are tons of the "imabs" coming out right now, adalimumab (humira), golimumab, infliximab (remicade), etc.... they are all tnf blockers, they all do basically the same thing with the same risks. And you can bet they'll all be approved for use in CD/UC in the future! I don't know what they'll find in the future about long-term use of these sorts of drugs, but I'm betting it's not going to be good. LDN... maybe, but only if my own GI would prescirbe it. I'm happy with him, he's accomodating, etc. I don't want to do a phone consult, deal with meds thru the mail, etc. I like the fact that if I call my doctor or need to see him ASAP, I can. I'm just in a pessimsitic mood right now- there are a million things to try, but none seem to get me in remission.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30597
   Posted 2/27/2009 3:42 PM (GMT -6)   
A slow simmer of constant inflammation can do lots to the system. Remember, autoimmune disease can have another area take up the cause...in other words, join in.

I'd not want to be dependent on biologics, because they will only work for so long. Since you havn't had the results for the positive criteria, you'd pretty much be postponing the inevitable.

I'd be scared crapless to have the surgery, but there are awesome, awesome members here who I would trust to say it would be OK for me to go ahead with it.
I'd want my life to be not ruined from the potential side effects and my energy and hopefullness be used for getting on with learning how to live with no colon.

Maybe I'm not the best person for the suggestion since we don't agree on many things.....but I think it's better to make the decision than to be forced to.

You have to wait to give yourself permission....possibily. What does your husband say in this matter? your family? Would that have any weight in your decisions?

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/27/2009 6:02 PM (GMT -6)   
Boy, do they ever have lots to say! My husband wants me to have surgery- he understands my reservations, but feels the meds are worse than anything surgery could bring. He also expects that I will probably have to have surgery within the next few years, & would rather I do it while feelling sort of well. My family, like my Mom & sister, don't say too much- they were supportive of my decision in the past to have it, & they've been supportive of my change of heart. They, however, know next to nothing about the biologics... they know a little about the scary side effects, but not like someone who's actually taking these drugs. Whether we agree or not, quincy, I do value your opinion...I think you said it best, I have to give myself permission. Which is so darned hard to do. It seems like every day I get a little more accepting, but to actually go thru with it is another story. Although I do have to ask myself, if I feel like I'm just biding my time now, what am I waiting for? Truly, I think I'm waiting to get sick again, in a bad flare... which is SO wrong, but then, I'd be able to really go into it wholeheartedly. Or for the Remicade to lose all effectiveness. I know the biologics haven't been a life-saver for me... that's why I'm reluctant to keep pumping different ones into me, with half-a**ed results! Someday.... sad
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

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