Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS Colitis and colostomy bags

Hi all, been a while since I've been here. I have sever AS not sure what stage you would call it and pan-colitis. I am going through another flare up of the colitis. My Gastro and I agree that it should come out. Normally this procedure would require I use a colostomy bag for 6 to 8 months. Because of my AS my neck is totally fused. I can't look down at my gut. How would this affect the changing of the bag? We haven't tried Remicade since, apparently, there is no conclusive evidence that it would help with either AS or colitis. I currently take enbrel, which I find very effective for the AS but useless for the colitis. I have tried several of the common colitis medications, Asacol, Sulphasalazine, Imuran and found them either ineffective or intolerable (couldn't keep Imuran down). I have just started another round of prednisone to get my gut under control si I'm going to be feeling real good (of course that is relative) soon.

to KICKAS.

From the posts I have read, Remicade might be worth a bit more investigation. I have read that Remicade is good for IBD and gut related problems, better than Enbrel.

I understand about the neck, as I have the same problem. If one thing reminds you that you have AS, its is the neck. My neck is almost completely fused and the Doctors said that once it becomes fused the pain would go, but believe me it doesn't.

Do a bit of research on the NSD No Starch Diet, many people here have used the diet to improve bowel and IBD related problems.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne

Hi - I have just the opposite information. Remicade has greatly helped my AS and my Crohn's. In fact, remicade is the drug of choice for the Crohn's when asacol doesn't help. So it makes me wonder if it works so well for Crohn's, then why wouldn't it help with colitis? I know they are different but aren't they alike in lots of ways too? Remicade literally has given me back a life when it comes to the AS. Maybe you could get a second opinion from another rheumatologist.

Mickey

Rene,

Hi and welcome to KickAS.

I know many here and on other boards that do very well on Remicade for AS. I only have left sided colitis and I can't imagine what a severe flare of pancolitis must be like, you really have my thoughts.

Colitis research seems to be catching up. The similarities and differences between chrons are better understood and likely genes have been identified. Of course the Dr.s are starting to acknowledge that bowel inflammation has a bearing on the spinal inflammation, and mpre and more papers are discusing bowel integrity and the natural flora are the significant environmental factors.

I'm not sure if the axial disease will improve after the surgery, that's something you should research and get opinions or experiences.

There are several new anti-inflammatory medications coming through the trials for colitis which are boasting significant success between 70 and 90%. They are still several years out from being available to the masses.

I've been able to manage for many years by excluding or limiting starch and nsaids even the COX2's. These days it keeps the worse flares down abit, whereas before it was pretty much the only way. But like you only preddy seems to really help. I've found alot of the meds seem to flare things, especially those that effect Seretonin, esp Amytripiline.

I wish you well again! Good luck

David

Hi René,

Sorry about your colitis. Is it ulcerative colitis or Crohn's colitis? My sister has Crohn's with colitis, and had her colon removed as a kid because of fulminant colitis.

Enbrel has been proven ineffective in inflammatory bowel disease, so no wonder it's not helping. Remicade is very effective in Crohn's and in AS - which there's very conclusive evidence about! - but apparently not as effective in UC. Humira is also effective in Crohn's and AS.

Have you tried cyclosporine or Methotrexate? Methotrexate might be a good idea if you have problems keeping pills down, since it can be taken as injection as well as pills and you only take it once a week. My sister also has problems with keeping pills down, but does well with injections.

Anyway, I think if you change ostomy bag in front of a mirror, it shouldn't matter whether you can look down or not.

Good luck,

Nina

Forgot to post this link to an ostomy board. The people there might have helpful suggestions for you on how to change the bag etc.

http://www.ostomates.org/cgi-bin/yabb/YaBB.pl

Nina

Thanks all for your responses. So quick too. I have UC not Crohns Colitis. I was actually surprised to see how many people have crohns as well. I was on methotrexate for a long time. Didn't help a whole lot with the AS or at least not as much as the enbrel. I went for a while without flare ups of the UC. We stopped the methotrexate when the Enbrel proved to be so effective. When I had my next flare up of the colitis I suggested going back on the methotrexate. I don't remember how long that was after I stopped the methotrexate. My rheumy is unwilling to prescribe it since I don't need it for the AS and my Gastro did some research and could find no evidence that it works well with UC. I'd certainly be willing to give it a try again. I have made some changes in my diet but I don't have the discipline to to make the whole sale changes that may help. I enjoy my burgers too much. I found that eliminating something from your diet is usually better then trying to find a replacement since the replacements were usually tasteless or taste terrible. The main thing I have eliminated is dairy. There are also some natural things I take and I think they helped for a while but it could be that my colitis is just too far advanced. There was another specialist I saw several years ago. I am going to try and see him again. He is a very busy man though so I might not be able to get in to see him in time.

Thanks ... René

Rene'

While alternative and complementary therapies are being suggested, as someone with AS & IBD, may I offer two additional sources of information:

1. Thompson, J. P., Listen to Your Gut
2. J. Scala, The New Eating Right for a Bad Gut

The latter emphasizes supplements of fish oils, which I have found helpful. The first book is more of an overall, alternative approach to getting into remission. I found the Non-Starch Diet and Low Starch Diet somewhat helpful. Hopefully, you can find something that helps less drastic than removing a portion of your colon.

Best regards,

jcwinnie

Hi Ferrire39,

I sent you a private message regarding my experiences in this situation; let me know if you don't receive it.

Brad

Welcome to KAS, Wayne always gives you the wecome post with all the
good information. Wonderful people here, and every one shares their
experiences with AS. My son was dx'd in 1987, already had both hips
replaced, is on Enbrel now and doing great. Keeping our fingers crossed.

Good luck and hope you get help with the gut problem.

Maxine

"Mike's Mom"