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Am I being premature or just crazy?

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Ulcerative Colitis
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Posted 6/17/2012 1:50 AM (GMT 0)
I have so many questions, but I will start here so I don't overwhelm. I will post my other questions soon. I am currently flaring after being diagnosed with UC in April 2011. This is my second flare with the other one occurring in October 2011. That one lasted 2 weeks and cleared up when I increased my generic Colazal from 6 pills a day to 9 pills a day.

My current flare started May 15th and I was put on 40 mg of Prednisone which I have been on for 11 days now with no results. 3 bm's (bloody diarrhea) in the morning and then I take the prednisone and usually have no more bm's the rest of the day. My GI is planning on bumping up the prednisone to 60mg on Monday. I also started Rowasa enemas 2 days ago. They also mentioned something about prednisone IV.

My concern is that if the prednisone doesn't show results, they are going to want to start me on Imuran or Remicade which worries me to no end. I am to the point where I am going consult a surgeon about colectomy options just so I don't have to start a long road of dangerous toxic chemo drugs. Being a younger male, I really worry about the chance of blood cancer.

I am looking for answers regarding safer alternatives after prednisone or thoughts on pursuing surgery and bypassing the other toxic drugs. I really value the comments on this board, so please don't feel the need to hold back. Thanks.

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34 year old male with 2 young children
Dx with left-sided UC in April 2011
750 mg basalazide disodium 9 pills/day
Currently 40 mg prednisone/12 days no improvement
Posted 6/17/2012 2:03 AM (GMT 0)
If you do not want to go the heavy duty drug route then surgery is definately a viable option. I am very happy with my surgery results. But I did try Remicade first. And who knows, maybe if I worked I may still be on it but it didn't work so here I am 2 years later enjoying a life free of UC.

I tried some alternative remedies, accupuncture, and diets as well as all the drugs so I believe I did all I could before having surgery. If you are not responding to 40mg of prednisone you may be steroid refractory like I was. I would only respond to 60mg or higher. Obviously that's a no go to stay on for any length of time.

It wouldn't hurt to go and interview a few colorectal surgeons. This way at least you the facts and information you need so if the time comes you are prepared. Good luck to you!
Posted 6/17/2012 2:12 AM (GMT 0)
Alot of members on this forum could not tolerate meds well, but once they altered their diets and added supplements found UC to be more tolerable or at least under control to some degree. Although I wasn't really on a high dose of prednisone for more than a couple of months, I knew I wouldn't be able to get off of it without finding some other form of treatment. The SCD diet really helped me get off the steroid.
Posted 6/17/2012 2:40 AM (GMT 0)
Hi James,
I have not read the rest of these comments as I need to go to bed. I just wanted to give you my 2 cents since you're weighing your options between Remicade and surgery. I was placed in your same situation; many doctors were way too scissor happy and were ready to remove my colon, and that was before I even tried many of the UC medications. After exhausting all other means, Remicade was my next option. I see that you are also concerned due to your age; I was 22 when I started. Of course, I was hesitant and I knew the risks associated with the drug. Many of those terrible (possible) associated risks are when you are on another immunosuppressant- that's when the cancer chance goes up significantly. However, I have nothing bad to say about it (other than getting an IV every 8 weeks). It has been the only medication that has helped me and given me my life back. Personally, and as I stated before I am only giving my opinion, but I would exhaust all other drug options available before having major surgery. I'm sorry you're having to deal with this headache; I hope you get to feeling better soon.
Posted 6/17/2012 2:47 PM (GMT 0)
James77-
Welcome to the forum.
IMO, you should exhaust other options before considering surgery which is not reversible.

Many have benefited from diet changes and supplements along with conventional meds and not-so-conventional LDN. I started treatment with 9 colazal daily and mesalamine enemas. I refused to take prednisone.
It took a long time (mostly because my GI assured me that diet didn't matter) to discover that food choices make a big difference (at least for me).
You should read the posts on the Ostomy forum before considering surgery. There is a risk of ongoing (very unpleasant) issues.

My GI wants me to have a colectomy because of the appearance of precancer cells but I am holding out as long as possible. He also told me that his last patient who had a colectomy spent 25 days in the hospital.

I believe he's giving me the "party-line" regarding the AGA recommended protocol for my situation. BUT then he makes comments (i.e. I have an excellent chance of not developing cancer) that tell me he's not sure that his recommendation is a good one.

In any case, check out all of your options.
I wish you the best. :-)
Posted 6/17/2012 4:13 PM (GMT 0)
IMO you need to give rectal meds like Rowasa a good chance before leaping into stronger meds or surgery.
Add a strong probiotic into your daily routine also.
Diet modification worked for me but it is not quick if you want fast results, however going gluten-free for 2 weeks should give you an indication of whether your symptoms get better due to that.

When you make several changes at once (Rowasa, probiotic, gluten-free) you won't know for sure which one or more helped you but in my book who cares if you get results. Ask questions later. Will your doctor agree with probiotics and gluten-free? Some do, some don't. That doesn't make him right because many, many people here have gotten relief from those as well as other choices.

Best wishes.
Posted 6/18/2012 2:44 AM (GMT 0)
Thanks do much for all your wonderful advice. I know I still have options, but I feel I am running short on time before this flare gets worse from tapering the prednisone.
Posted 6/18/2012 2:50 AM (GMT 0)
James,

Welcome to the forum.

Yes, it's a hard place to be. I've been exactly where you are now.

None of the meds worked, and my doctor finally gave me a choice of remicade or surgery; I refused both and found my own way.

I would suggest as IAS said, to exhaust all options before surgery.

And there are many things you could try in combination IMO:

diet modification, supplements, certain amino acids, probiotics, and LDN, low dose naltrexone.

If you'd like more info on these, please check out the link in my sig.

I hope you start feeling better soon.

Posted 6/18/2012 11:46 AM (GMT 0)
James,

I would definetely other medications along with trying to see what type of diet or foods work for you. I have been on Imuran for 11 years to control my UC. The first 4 years that I was diagnosed with UC I was in and out of the hospital many times for flares. The first 2 years were the worst. I was 14 when I was diagnosed. As time when on you learn what works for you and what doesn't. There were a few times that I considered surgery, but my doctor was certain that things would finally get better---and they did. I am so glad that I toughed it out and did not do that, because the past 5 years I have been in remission. There are many people who take Imuran and Remicade to control their UC and do not have negative effects, such as blood cancer. There are also other medications that you can try; one that I tried was Pentasa, that is the only one I can think of off the top of my head so early though. I am sure you can find more online to discuss with your doctor.

Please do not be offended by this, but from what you have said your flare and the previous one do not seem too bad. At my worst I would go 20 times a day,if not more, for months. During one flare I lost 60 pounds and the flare lasted 4 months. I know that everyone has different types of flares and they all vary. I think you should give the Prednisone more time to get into your system also. I think that the side effects of Prednisone are worse than the side effects of Imuran, but that is just my opinion. I know that it seems terrible righ now, but I think you definetely need to give it some time and try these other medications before you consider surgery. I know that UC gets in the way of life, and I saw you have 2 young children, which probably makes it terrible, but hang in there for awhile longer!
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