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Ulcerative Colitis
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Posted 7/16/2012 5:05 PM (GMT 0)
hey everyone, so as i am still fairly new to ulcerative colits am not sure if im headed in the right route or not. After being diagnosed nearly 4 months ago with pancolits I've seen nearly zero improvement. so far I've tried asacol hd 800mg 3 times daily, prednisone (only for about a week because of side effects), and now i'm currently taking lialda 1.2mg 3 times daily along with 900mg of entocort. i am still having frequent urgency with blood every bathroom visit. Anyways without ranting to much i am not satisfied with my GI as he is impossible to get a hold of and every time i go to see him, it seems as he tries to get me out as quickly as possible and i end up having to ask my nurse all my questions which she just answers by getting on her computer. So i have been doing a lot of research about different treatments such as the triple antibiotic therapy, and LDN none of which my nurse has heard about but says she'll ask the doctor. Well from what I've researched i figure the next treatment the doctors are probably going to put me on is the imuran/6-mp which I'd prefer to stay away from due to the many side effects I've read about. So my big question is I'd like to give LDN a try but understand it is difficult finding a doctor that will prescribe it. My current doctor said NOPE its not used for UC. Does anyone have any info on how to get LDN, maybe a list of doctors or possibly any doctors that will do a phone consultation and prescribe it. I am located in the inland northwest Spokane, WA. i would greatly appreciated any help, regarding LDN, and honestly i don't even know if this treatment is something i'm trying to jump into to fast or not. Thanks again
Posted 7/16/2012 5:22 PM (GMT 0)
I know you're asking about LDN but I want to know this: why haven't you been using a mesalamine retention enema in addition to the oral mesalamine? Since you had pancolitis at diagnosis you are going to have to treat the WHOLE colon.

Entocort can effectively treat the cecum. Oral mesalamine can treat the ascending and transverse colon, and perhaps the descending colon. That leaves the lower part of the descending and sigmoid colon without an effective treatment plan. ==> rectal mesalamine can treat the rectum, sigmoid colon and probably the descending colon very well.

Call your GI's office and ask them to call in a prescription for rectal mesalamine retention enemas, 4g. You can get those started, every night for the next month, while you research alternatives like LDN.
Posted 7/16/2012 5:25 PM (GMT 0)
Have you not been prescribed any rectal meds? I think they might be helpful. If you do a search in this forum for LDN I'm sure you can get more info regarding it. Especially if its a posting from member insofla. Members have just done phone consultations and then had it prescribed to them. Good luck.
Posted 7/16/2012 5:54 PM (GMT 0)
the enemas is something i actually just called my Gi about today and i am supposed to hear back sometime today. I just asked her i wanted to start the mesalamine enemas. do you guys have a preference into which one i should use/most effective.on a side note Ive read about suppositories whats the difference? thanks again for the help
Posted 7/16/2012 6:21 PM (GMT 0)
suppositories are small and will only treat the rectum.

Rowasa is the brand-name mesalamine enema - they even make one that is sulfite free for those who are sensitive. I've been using a generic version of the regular enema for years. One brand bothered me so I switched brands.
Posted 7/16/2012 6:33 PM (GMT 0)
Yep I use the generic also. REALLY helps. Enemas do take some getting used to but soon you will be a pro at it.
Posted 7/16/2012 6:40 PM (GMT 0)
Enemas are more medication per dosage and deal with the rectum and sigmoid. The oral meds deal with the rest as well as the sigmoid.

The suppositories deal with the rectum, are a lower dosage. My opinion...they are better for support in conjunction with the enemas, for tapering down the enemas or for maintenance.

In the US, the 5ASA enemas are Rowasa or a generic mesalamine.

If your doctor says they don't deal with the entire colon (it's a BS line), they're not supposed to nor have any expectations to do so.
UC's "hotspot" is the rectum...my opinion is that it should be dealt with accordingly.

Every UC patient should be given the opportunity to see how they work for them.

q
Posted 7/16/2012 8:29 PM (GMT 0)
ditto on the enemas

I too have resisted 6mp

I am trying high doses of VSL#3 probiotic (but I got things somewhat managed with Lialda and enemas first). It does help form stool, but is not giving me remission so far. I am hoping it helps Lialda work further along.

I also use one Welchol tablet a day to help form stool. (It is a cholesterol med, but its effect is to make things bind in the colon.)

I will add LDN next if there is not enough progress in several months. (My GI wrote the script after I discussed the research on LDN and Crohn's.)
Posted 7/16/2012 9:56 PM (GMT 0)
So great news just got off the phone with my GI's nurse and he refused me the enemas, saying he doesn't want to add anything new right now just give this medication time to work. its been months with no improvement, Guess its time to find a new GI!!!
Posted 7/16/2012 10:04 PM (GMT 0)
Oh yes definetely time to find a new GI. I had ones that don't even think to add in the enemas. They certainly aren't going to hurt you...you could only benefit.
Posted 7/16/2012 10:51 PM (GMT 0)
I am currently on Remicade an 8 week I.V. infusion medication to keep my u.c. in remission. You may want to research that. I have a wonderful doctor in the Cincinnati, OH area. I also take Lialda 4 pills a day and Canasa suppositories 1000 mg a day. I have been in remission for almost a year. Hang in there and do your research. You are your best advocate.
Posted 7/17/2012 12:09 PM (GMT 0)
Moose,

Definitely time to find another GI, one who understands your needs and listens to you.

 

Posted 7/17/2012 1:09 PM (GMT 0)

quincy said...
If your doctor says they don't deal with the entire colon (it's a BS line), they're not supposed to nor have any expectations to do so.
UC's "hotspot" is the rectum...my opinion is that it should be dealt with accordingly.

Quincy - I have been trying to tell my GI this for YEARS.  This is absolutely true.

Posted 7/17/2012 1:12 PM (GMT 0)
I hope you can find a better GI. That's asanine he won't give you the mesalamine enemas.
Posted 7/17/2012 6:53 PM (GMT 0)
Of course, it's my perspective through experience, and obviously with others on here who have "taken up the cause" based on their experience. My GI stated that there's a low incidence of patients who'll comply with the enemas...

We all deserve the right to try them since they are an option....but they are expensive.

moose...when do you go back to see your doctor? Make an appointment anyway, give it a few more weeks and revisit that issue. He did say "not right away"...so that's in your favour.

q
Posted 7/17/2012 7:08 PM (GMT 0)
VSL#3DS
Pack psyllium seed powder into large empty capsules, down 4 with 8 0z of water 1,2,3 times per day
Sulfasalazine works when all the asacols etc did not work
Mebeverine or Librax also help slow things down
Cut out carbs, eat clean meats like tenderloin and salmon, no processed meets with additives.
Hydrate.

I recently got into some bad behavior with guests staying at my new house, lets just say it involved small glasses and lots of cut up limes. Turns out the limes are really a trigger for me. Oh well 2.0 years on the wagon was a pretty good run.

So things were getting pretty bad 1st blood I saw in 2 years of remission so I went out and found my old meds still boxed up from my house move deep in the garage. I started the Mebeverine, Librax and Sulfasalazine and once again it made an overnight difference. Back to normal !

Ordered more Mebeverine, will be sure to have VSL#3DS and Sulfasalazine on hand but Doctor wants to see me before he gives me more than one month supply since I have blown him off for 2 years.

I aim to be 100% Med-free but when you just wont play by the rules meds can help get you back on track. This is my FLARE season and the heat dehydrates me so a flare is such a slippery slope that I have chowed 6 sulfasalazine tabs, 4 mebeverine and 4 librax and 3 packets of VSL#3DS and I am back to normal, fever gone, blood gone, solid waste returned. Still a bit dehydrated but working on it. Staying out of the heat and letting my landscape crew do the dirty work. Last thing I need is a severe flare.
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