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Posted 7/7/2011 2:35 AM (GMT 0)
My doctor who is usually positive seems like he has run out of options. He upped my imuran and if that doesnt work he was talking about trying remicade again but other than that he mentioned surgery too. He said I am one of the cases that it just hasn't healed although it is always limited to left-sided which I guess is good. It is just frustrating because I am living a tolerable life right now, but he said there is longterm risk of colon cancer if we can't get it to heal. Just needed to vent.
Posted 7/7/2011 2:39 AM (GMT 0)
I understand how you feel and I'm sorry!! How long have you had Crohn's/UC?
Posted 7/7/2011 4:10 AM (GMT 0)
I hear that, I was given those options by my doc, who was trained at Sloane,

He keeps telling me (after each biopsy) I dodged a bullet. He says I need to find a surgeon.

I found someone and he referred me to someone else who put me on Cortifoam. I had some initial success.

I may have pushed the envelope a bit too far as I am in the 4th week of a flare up.

I feel like I may be getting closer to getting under control. So it has not been a good summer.

Good luck and hang in there.
Posted 7/7/2011 5:21 AM (GMT 0)
Hopefully if all else fails surgery will rid you both of this...

Be well
Posted 7/7/2011 11:37 AM (GMT 0)
Meds never worked for me either and I was facing the same choices although my GI never mentioned surgery yet. I gave diet mod. one more try and succeeded. Have you tried diet mod.? Your sig. is missing so I can't tell.
Posted 7/7/2011 11:52 AM (GMT 0)
ThePostmodernIrony,

Sorry you're feeling hopeless. UC sucks big time.

I gather when you say : My doctor who is usually positive seems like he has run out of options - that he's had you on rectal meds too, and they too were ineffective?

Like imgardener2, I think you may want to try diet modification. Many doctors don't believe in it, but lots of this forum have been helped by the SCD diet. IF SCD is too rough for you, you could just start being dairy and wheat free and see if that makes any major differences in how you feel?

Also there are some supplements that can help, IMO:

1) Have you had Vit. D3 levels checked? There's a big connection between low D3 levels and IBD.

2) Are you using any probiotics? VSL#3 is a good one because it has 450 billion active cultures, and you can get it from costco's.

3) Have you tried adding L-Glutamine 15 grams - this helps with colonic repair?

4) Omega 3 or krill oil - 2 grams - can help cut down on inflammation, you could try that too?

Lastly, as everyone knows, I am a great proponent of LDN, specifically Transdermal LDN - you could try that?

Also, some have had great success with FT - Fecal Transplantation - if you can get over the yuck factor, do some research, it might give you a better alternative, no?

Let us know how you make out.  This is a great place to vent, and we're all here for you :-)

Posted 7/7/2011 4:31 PM (GMT 0)

ThePostmodernIrony said...
My doctor who is usually positive seems like he has run out of options. He upped my imuran and if that doesnt work he was talking about trying remicade again but other than that he mentioned surgery too. He said I am one of the cases that it just hasn't healed although it is always limited to left-sided which I guess is good. It is just frustrating because I am living a tolerable life right now, but he said there is longterm risk of colon cancer if we can't get it to heal. Just needed to vent.

Hi there,

The second thing my doctors told me four decades ago that I need to be aware that in about 10 years they'll need to operate on me. They still do. That is something the doc needs to tell their patients when certain issues arrive.

You're living a tolerable life now, hang on to that; things may improve tomorrow.

I just wanted to provide a link to Mayo Clinic's Remicade study that you might find helpful: http://www.disabled-world.com/health/digestive/ulcerative-colitis-treatment.php

We all need to vent. Feel free to vent more.

Have a great day. turn
Posted 7/8/2011 2:48 AM (GMT 0)
I think your doctor should not be so alarmist about cancer. If you are getting scoped with biopsies by a reliable pathologist that will tell the state of your colon tissue most accurately. Also, if he is running out of options, you may be able to consult with another gastro who has more experience treating IBD & familiarity with newer treatments or drug trials. Best wishes! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/8/2011 3:46 PM (GMT 0)
ThePostmodernIrony,

I notice you have not answered InSoFla.

What have you done up to this point?
Posted 7/8/2011 4:16 PM (GMT 0)
Sorry guys, I forgot to check the box for my signature. I struggle with the more extreme diet modification although I have been thinking about it. It is such a lifestyle change that it is a great challenge for me. I cut out dairy most of the time and somewhat avoid gluten but probably not enough. I think I framed the colon cancer part in a way that made my dr sound alarmist - he really just said we would have to check up on it every other year. Thank you all for your support. I think I need to think some more about diet modification and how best to approach it. How do people deal with the social aspect of diet modification, like people that eat out, eating with family, etc.? I am on florasmart probiotic also.
Posted 7/8/2011 4:25 PM (GMT 0)
well, back to your initial post- I hear you!!!!!! I am in a similar boat, tolerable day-to-day living, on all the meds I am willing to go on, & still having symptoms, still bleeding, still getting the colon cancer risk/surgery talk.... Whatever. I have added the steroid enemas to my routine, am doing them 3-4x a week & they have helped with the bleeding immensely. I am scheduled for another scope in August, & I will not hear "you need surgery" again! I hope not, at least. We're similar, both seem to have refractory colitis, just doesn't respond well to meds. I too have done the extreme diet modification- I can't live life that way, I enjoy all aspects of food far too much. So who knows, I'm hoping the regular use of the steroid enemas really put me back into remission (I was there once, a long time ago!). As far as cancer risk, my biggest problem with that is the hundreds of pseudopolyps in my colon- they can't biopsy all of them, so it'd be pretty easy to miss that one cancerous one, you know? My GI did say if there's any sign of dysplasia in the upcoming scope, the whole thing has got to go. Which is basically the onhly reason I'd undergo surgery at this point. It's disheartening- overall I feel ok- not great, I have bad days, but ok.
Posted 7/8/2011 4:26 PM (GMT 0)
I just think there are so many contradictions between different diets, it's just overwhelming and there are so many things that are bad for me, my diet is already so limited. I feel like I need to introduce more tolerable foods before cutting out gluten entirely.
Posted 7/8/2011 4:28 PM (GMT 0)
Eva Lou,
I had a few bumps which he removed but were negative on all the tests and the dr said it was from the way was healing.
Posted 7/8/2011 5:23 PM (GMT 0)
Postmodern, I am not a fan of restrictive diets, and still am not convinced that the science is sound behind many of them. I did decide, however, to go gluten free this summer just for a trial. I was already gluten "lite" like you, so I figured it wouldn't be that hard.

I'm here to report that the positive results are enough of a motivation to make this an easy, easy adjustment for me. I believe I have Crohn's, not UC, and a lot of my issues were higher in the gut than my colon, so gluten sensitivity made sense when I tried to figure out how I could improve my quality of life without going on a more serious medicine regimen. My IBD is not cured, not by a long shot, but I can tell you that many of the issues I was struggling with are significantly improved. Coincidentally, 2 weeks after going gluten free I had to stop all my 5-ASA meds due to some side-effects my GI wanted to deal with. I added the sulfazine back in 10 days later. So at the moment I'm taking 1.5 g sulfazine, a ppi, my supplements and that's it. I have no diarrhea. I have no nausea.

One of the most surprising things that happened with my change in diet was the improvement I noticed in my ability to concentrate. This became obvious to me about 2 weeks into my new diet. This alone is enough reason for me to avoid gluten for the rest of my life. It has nothing to do with IBD and was not something I was even thinking could be a diet problem. I have been perimenopausal for a few years, and like many women in the same boat I was thinking that my decreasing estrogen had affected my focus. Ha! It turns out that there is evidence that many women become gluten sensitive in menopause.

As far as social eating goes, it is a bit challenging, but most restaurants these days can help with gluten free menu items or minor modifications. Eating at friend's houses might be a different matter, but friends who care about you will want to meet your needs.
Posted 7/8/2011 5:51 PM (GMT 0)
I totally understand how you feel. I was in the same boat. For some of us tough cases, meds and drastic diets just don't work. I tried them all.  I hope you can find something to help you but just know if it ever comes down to it and you need surgery, it can be a huge blessing in disguise. I have gone from knocking on death's door to 100% healthy in less than a year by having j pouch surgery.

Best wishes to you!
Posted 7/8/2011 6:09 PM (GMT 0)
ByeBye,
I think that is the hardest part in that I am not at death's door. If I was, surgery would be a no brainer with no regrets. The problem is that I am living a pretty tolerable life right now and surgery seems extreme in that case.
Posted 7/8/2011 7:05 PM (GMT 0)
     Postmodern...I noticed you take aloe vera juice.  Any luck with that?  When I suffered with UP, my GI's nurse told me one of their patient's who swore by that stuff.  His symptoms completely dissipated.  That is one thing I never tried, not sure if I would be able to get it down..lol.

     Although I was not at death's door when I had my surgery last year, I sure had a crappy (no pun intended) quality of life.  For me, it was time.  Twelve years of suffering, ran through the gamut of meds and became prednisone dependent.  At age 63 I felt it was time to take the bull by the horns.  My health was deteriorating rapidly from the prednisone....high blood pressure, Type II Diabetes, osteoporosis, not to mention abnormally high liver  and pancreatic enzyme levels from the 6MP.  Since Remicade and Humira failed to improve my condition, I sought help from a colorectal surgeon I found online since my GI doctor refused to send me to one.  He just wanted to try more meds.

     I have a permanent ileo and feel great....no Type II Diabetes, blood pressure under control with only one pill instead of three, liver and pancreas enzyme levels normal..whew.  I will forever suffer with osteoporosis thanks to prednisone but no longer suffer with UP.  The surgeon said I was right in having the operation...that my rectum was badly diseased.  Believe it or not, my colon was not bad....only minor diverticulosis.  I suppose the Colazal helped keep the UP localized.

     That is my story in a nutshell.  Oh, my paternal grandmother died from rectal cancer so that played a big part in my decision also.

     I am NOT advocating surgery by any means.  If I had one thought that another med would cure my UP I would go for it.  The best of luck to you and God bless. 

Posted 7/8/2011 7:21 PM (GMT 0)
Not really sure if it helped or not. Just like probiotics I never see a dramatic effect but since I don't feel worse I wonder if I should keep taking it. Funny thing is I was looking at the SCD website and it is one of the banned substances.
Posted 7/8/2011 7:49 PM (GMT 0)
     LOL...no kidding?  Ever hear of **** ***?  We have some friends who sell the stuff.  They aren't making any money off me though.  Sounds like the old time Medicine Man who used to sell his wares in a horse drawn wagon.  Oops...giving away my age!
Posted 7/8/2011 8:41 PM (GMT 0)
Sorry, maybe that was the wrong choice in words...too much following steroids in professional sports I guess.
Posted 7/9/2011 1:19 AM (GMT 0)
Yahoo just reposted an article on 10 scary food additives. Three of them are used in the U.S. as dough conditioners: azodicarbonamide (banned in U.K.), ammonium sulfate (often used in fertilizer!), & potassium bromate, a possible carcinogen. These sound like an excellent reason to go gluten-free, or at least to regularly read ingredient labels whenever possible. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/9/2011 1:45 AM (GMT 0)
Actually the stuff the snake oil salesman in the old medicine show sold might help more than the modern meds help some of us, because most of it contained opium. Of course it might have given us toxic megacolon and killed us, but...

I feel for you, I went through six years of hades before Remicade finally helped me. Hope you find some relief soon.
Posted 7/9/2011 2:02 AM (GMT 0)
postmodern, i feel the same right now, too, so you aren't alone. my life revolves around my illness and things shouldn't be that way. i pray so much but god doesn't seem to be listening to any of my prayers. i hope he will someday, if he exists (i'm lost at this point in my faith). let's just say i will cross my fingers that we both find something that works for us.
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