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Posted 12/13/2012 4:26 PM (GMT 0)
Hi, I have been dealing with active uc for over a year and have not went into remission. I am on the highest dose of asacol and do not wish to go on steroids, biologics or immune suppressants. I am thinking of asking my doctor about an elective colectomy. Anyone else been down this road?
Posted 12/13/2012 4:36 PM (GMT 0)
Wow, you want to go from first tier meds to last stop surgery.

I'm pro surgery, but it's not all roses. Go take a look at the ostomy section.

How long you've had UC anyways?

Posted 12/13/2012 4:39 PM (GMT 0)
2 years. Another deciding factor is the financial burden as I have a 5000 deductible and have to get colonoscopies frequently because of 2 adenomas found when I was first diagnosed
Posted 12/13/2012 4:43 PM (GMT 0)
If you don't want to do the stronger drugs, that's entirely your choice, as far as I'm concerned. I know quincy has decided she'll get a colectomy if the mesalamine-based drugs quit working for her.

My guess is your GI will be against it, but don't let that stop you. If you have to have a referral to see a surgeon, ask your PCP for one. But if you don't need a referral, schedule a visit with a surgeon on your own. Just do your homework and find the best CR surgeon you can!
Posted 12/13/2012 5:17 PM (GMT 0)
I totally agree with skipping prednisone, immunemodulators, and the biolgoics. BUT - have you tried any natural treatments or dietary changes? Many of these actually work. Also, there is a new first line treatment which may be available whithin the next year which has had promising results with almost no side effects.
Posted 12/13/2012 5:22 PM (GMT 0)
immune suppression meds like imuran are actually very safe and very effective in most cases. The fear of these drugs seems way out of proportion to me, compared with getting your colon removed, which can be worse than having UC.
Look at the facts, do your research and be realistic about the outcomes, getting your colon removed is not something you can go back on and many folks find that they had crohns all along AFTER they have had surgery.
Posted 12/13/2012 5:30 PM (GMT 0)
which first line treatment is that gary?
Posted 12/13/2012 6:21 PM (GMT 0)
Depending on what "not in remission" means, the wisdom on this may vary, and of course the final arbiter is you.

There will be some ongoing checkup/care required after surgery. Maybe less if you have an ostomy, more if you have the internal j-pouch. Best to inquire on the ostomy forum. The cost of this care may be less than yearly scopings, but the net savings may not be as great as you think. IMO, a few thousand a year either way should not be the deciding factor in surgery. It should be quality of life, and what is the best option.

If you are partly managed, and function without too much urgency and diarrhea, then it could make sense to wait and see what new treatments become available in the next few years.

If you think the adenomas are likely to turn malignant over time and you need surgery anyway,that can tip the scales a bit.

For myself, I will try the immune suppressants and biologics before I consider surgery. For now I am managed well enough on 5-asa and supplements that I work, avoid accidents, and just need a bit of help with iron to offset bleeding. I am very keen to see what then next 2-5 years will bring.

Post Edited (DBwithUC) : 12/14/2012 8:14:45 AM (GMT-7)

Posted 12/13/2012 7:20 PM (GMT 0)
http://en.wikipedia.org/wiki/Vedolizumab
Posted 12/13/2012 9:06 PM (GMT 0)
Thank you all for your input, I will think on it and discuss at my next dr's appt
Posted 12/14/2012 2:04 AM (GMT 0)
I was willing to try 6mp and then biologics before I had j pouch surgery. But if you are not comfortable taking those drugs and cannot get your UC under control, then surgery is a viable option. I will say looking back now, I wish I had skipped the heavy duty drugs and just had the surgery sooner but yes, hindsight is 20/20.
Posted 12/14/2012 12:22 PM (GMT 0)
Have you considered stopping the asacol and seeing if it is actually giving you the symptoms? Worsened UC is one possible side effect of all 5ASA drugs (that's the case for me). Or, it might be that a different kind of 5AsA will work much better. But before jumping to conclusions on surgery I would try stopping the asacol for a few days.
Posted 12/14/2012 12:54 PM (GMT 0)
Leon,

I agree with probiotic. Many people actually are intolerant of the mesalamines and don't know it, and get UC  like symptoms which they mistake for UC.

There have been many on this forum, myself included, who have done very well with a combination of: diet modification (gluten and dairy free), adding certain supplements like slippery elm powder, l-glutamine for colonic repair, ensuring adequate levels of vitamin d3, adding omega 3's, probiotics are definitely  key, and you could also look into LDN, low dose naltrexone. Once you get the LDN script, it only costs about $30. a month, and LDN has almost no side effects.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 12/14/2012 1:35 PM (GMT 0)
InSoFla: I don't understand your first sentence. In order to have UC usually you have to be diagnosed with it, which means you have had to have had UC symptoms first and then put on Asacol after you have already been diagnosed with UC. You must have meant that sometimes the 5ASA's can make your symptoms worse than before. It kind of sounds like you were saying that maybe they didn't have UC at all but Asacol gave them UC symptoms, tricking them into believing that they had UC when they really didn't. It would seem to me that if you were diagnosed with UC and then put on Asacol you would know if the drug was helping or making you worse or having no effect at all. Sometimes I suspect that my Asacol has made me both better and worse at the same time. Before diagnosis and being put on Asacol I was only having 2-3 BM's per day but it was bloody diarrhea. Since being on the Asacol my bm's have been formed with no blood but I am now going 6-10 times per day. I have no proof though that Asacol has made me worse in any way. It could have been the natural progression of the disease and it could also be related to my colonoscopy. It is possible the prep from the colonoscopy is responsible for the part of me that is worse and not the Asacol.
Posted 12/14/2012 1:42 PM (GMT 0)
Gary,

I guess in my morning stupor, I wasn't clear posting what was going on in my head.

Yes, to be put on mesalamines, you have to have been diagnosed with UC. But One of the side effects of these very mesalamines is the UC symptoms: increased cramping, D, etc... and it's sometimes hard to dicipher(sp?) which is which. And in some intolerances can develop in time, and not be an immediate reaction.

Just more of FYI, to be on the look out for...

As to your case, yes, the colonoscopy prep may have made the symptoms worse as they usually do. I guess the only way to know if the asacol is the culprit for more frequent BMs would be to change meds.

I am not suggesting you do this, and I know you're alot smarter than I am in making these extrapolations.

Posted 12/14/2012 3:12 PM (GMT 0)
     Never thought I would say this....but, I do agree with beat UC's post.  I did have a total colectomy with end ileostomy back in June of 2010 but not before I ran the gamut of meds.  I understand your reasoning completely, but I was on 6MP for seven years and I didn't suffer the consequences until my doctor doubled my dose, which he should NEVER have done.  It only kept me in a remission for about a year and then I started to flare more frequently.  Stay away from that dreaded prednisone as much as possible.  Granted, for short term it may help you into remission, but I had become dependent upon it and it really harmed my overall health.  Only you can make this decision, but if I were you I wouldn't jump into surgery so fast.
Posted 12/14/2012 3:25 PM (GMT 0)
Some folks are allergic to 5-asa and get a strong and immediate response. It is a small percent of people, and I personally think that some of the people reporting allergy mistook the ongoing flare for allergy, but it is clear that some people were allergic because of the specific new symptoms they got.

Some folks, I understand a very very small number, who are not allergic can develop an allergy after some time (sometimes a year or two.)

Besides allergy, there is a side effect of 5-asa for some people (a very very small number in clinical trials) to get symptoms like diarrhea and bleeding that look a lot like UC. This side effect is listed on the manufacturer's website along with every other rare reaction. Some of these are not even proven, but because someone in a trial reported, it is listed for legal reasons.

I think it is an incorrect characterization to say "Many people actually are intolerant of the mesalamines and don't know it". That seems to be an inflation of the numbers, and coming from a place of bias. There is certainly no scientific clinical evidence to support the word "Many" - quite the opposite actually. 5-asa and other derivatives of willow tree bark have been used in medicine time out of mind. It is a form of aspirin. For the large majority of people they are very well tolerated and very safe.
Posted 12/14/2012 4:03 PM (GMT 0)
I have to disagree with the idea that its a small percentage of people who react to meslamines/5AsA's- i think that the adverse effects are underreported, based on an admitedly unscientific sampling of people on forums. I think a lot of people are encouraged by their doctors to "tough out" the side effects of asacol etc even though it is actually making their UC worse. And when side effects result in watery D, massive cramping, and bleeding, it is not just masking any beneficial effect, but completely obliterating the benefits and ripping up the colon to open up the auto-immune cascade.

I am, in full disclosure, very much intolerant of 5ASA's but i went through them around five times (different types) with doctors always insisting it was just a side effect I needed to out up with, when in fact every aspect of my UC was signficiantly worsened. I also realise that the majority of people on 5ASA's do benefit and that some may benefit long term while suffering temporary side effects only, but I do think that if one is on 5ASA's and not imoroving, it is a prudent thing to stop taking them a few days and testing the theory- and if one does improve once one stops, you could try another 5ASA or two the same way (if one is willing to) before ditching them Altogether. My point is that intolerance, to the point of them making ones UC worse, is not rare, in my opinion.

Post Edited (Probiotic) : 12/14/2012 9:06:49 AM (GMT-7)

Posted 12/14/2012 6:18 PM (GMT 0)
I'm afraid to change my Asacol. Since being on it my stools have been formed and my blood is gone. But I do suspect that it's possible that it is increasing my frequency and urgency and gas. I think the gas, which is a listed side effect of Asacol, could be reponsible for both the frequency and urgency. I'm between a rock and a hard place on this one because the Asacol DEFINITELY seems to be helping with formed stools and getting rid of the blood whereas the worsening effects are only POSSIBLY due to the Asacol.
Posted 12/21/2012 4:35 PM (GMT 0)
Surgery is an option you have to be 100% certain about. I knew when diagnosed that I would definitely have surgery if my quality of life sufficiently lowered, and it did. No medications worked, even IV steroids in the hospital.

After enduring Prednisone for a year and knowing I would never do biologics, I taked to my GI at the time that I wanted to have surgery and he was against it, basically saying he would not refer me to a colorectal surgeon. I basically said "Screw you, then" and went to the Cleveland Clinic where blood work was done and a colonoscopy the same day. That day I was hospitalized due to my blood work. I was severely anemic, riddled with pseudopolips, etc. Three surgeons came in and basically told me I was in a huge flare. After finding out I had been hospitalized three other times that year from my other doctor, at another facility, they said another flare like this would result in emergency surgery. Therefore, I opted for surgery and have not regretted it since.

Jan 3rd is my 2nd surgery, then two months later my 3rd surgery.
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