Wednesday, July 22, 2009

UPDATE: My Ulcerative Colitis and Acupuncture

I thought I would update everyone on my progress since my last post on alternative treatments for Ulcerative Colitis.


When I last wrote, I had just started on the herbal and homeopathic protocol prescribed by the medical intuitive, which turned out to be a huge mistake. Perhaps it was mere coincidence, but I took a major turn for the worse a short while after starting the regimen. Whereas I had no problems with urgency to go, beforehand, I suddenly had a terrible time controlling my bowel movements. I also became very nauseous, so I decided not to continue. My visit to the gastroenterologist was also disastrous. Had I not needed to have my health back on track by the beginning of June, when I was scheduled to start rehearsals for a play I had committed to last year, I would have said "bye-bye" and found another gastro; but pressed for time I opted to deal with him, anyway. He prescribed a new mesalamine drug called Lialda, and Canasa medicated suppositories, and scheduled my colonoscopy a week before I was due to start rehearsals. With no other choice, I waited the 3 weeks for the test. In the meantime, after taking the first Lialda, I suddenly developed a terrible pain in my left side. At first I thought it might be gas, but it got worse, and after 10 days, upon the docs approval, we switched to Apriso, another mesalamine drug. Miraculously, the pain ceased. Although the doctor was sceptical about the pain being caused by Lialda, I am convinced it was.


In the meantime, because of the nausea, I started losing weight. Food became totally unappetizing to me, so I started seeing an acupuncturist, twice a week. It helped quite a bit, until my dreaded colonoscopy, which set me back even further. The doctor had prescribed MoviPrep, and as anyone who has ever had a colonoscopy knows, the prep is worse than the test itself. I've had colonoscopies before, but have never experienced anything like this. Because of the nausea I was having a very difficult time with the liquid. Scheduled to start drinking 4 - 8 ounce glasses (plus an additional 16 ounces of liquid) at 5 p.m. the day before the procedure, and then again at 5 a.m. the following morning, I was able to down all but the last 1/3 of my 4th glass, when I proceeded to vomit most of the liquid up. Several hours later, I was vomiting blood, so a call to the doctor saved me the torture of drinking another 4 glasses the following morning, but I was told to use fleet enemas (which were too painful to use) and Dulcolax which did nothing. So when I dragged myself to the facility, the following morning, I had to have a warm water enema, which took 3 times to finally be done with, since I was in such pain.


As expected, I was diagnosed with severe Ulcerative Colitis, and this time it was all the way up the left colon. I was also told I had mild gastritis, and the doctor prescribed 40 mg of prednisone, and Rowasa enemas, in addition to the Apriso. Again, had I not been had a show to rehearse, I would have refused the prednisone. I was to take it for 10 days and then decrease by 5 mg every week. Since I was to be out of town for 6 weeks, we also arranged to have a followup with a doctor in that city.


I was able to arrange an appointment with the doctor a week after I arrived at my destination, but in the meantime I had a call from my gastro that my hemoglobin was 9.4 and that he wanted me to take 150 mg of iron a day, along with 500 mg of Vitamin C, and to have my blood monitored weekly. I decided I would continue with acupuncture and made appointments with 2 different acupuncturists. One was from China, the other was western trained. At first I wasn't sure which I preferred, but both had different techniques and the western AP utilized different modalities, so I chose to see them both. So for the first 3 weeks I was there, I went 4 times a week, before my 12 p.m. to 6 p.m. rehearsals.

By now, the nausea was terrible and I had to force myself to eat. Even a few bites of food was a challenge, and I was dropping pounds very rapidly. I actually wound up losing almost 30 pounds, during this whole episode, which was great for the play, since the description of the character is a slim, plain woman, but this was not the way I would have wanted to lose the weight, and I was starting to look anorexic.

When I finally had my appointment with the new gastro I was told I was one step from the hospital and that he would do his best to keep me out, but no guarantees. He upped the dosage of Apriso to 6 per day, for 4 weeks, extended the prednisone for another 10 days at 40 milligrams. I was to continue with the enemas for 4 weeks (or until I was done with the boxes I had). He also told me to take Reglan for 2 weeks (for the nausea- although I stopped after 1 week, because it made me dizzy) and also prescribed Kapidex for the gastritis, to be taken for 12 weeks.


It took a tremendous effort to get through the rehearsal day, some days worse than others, but the acupuncture was my saving grace. If I had a stomach ache in the morning, it would be gone after an AP session, and finally by the Friday before we opened, the nausea had gone, I had my appetite back, and day by day I felt better and stronger. 1 1/2 weeks before I left, after an acupuncture session, I finally started having formed stools. Even though my hemoglobin kept getting lower (a blood test on June 30th indicated it was 7.7), I felt strong, and I attribute that to the acupuncture. Both acupuncturists were dealing with the U.C., the anemia and stress. The Chinese acupuncturist prescribe some Chinese herbs, but on the two occasions I took them I got very sick, so decided it would be best to wait until I am done with at least the prednisone, before I start taking them again.

I am back home now, and have set up an appointment with another acupuncturist because I had a bit of a set back, due to some stress, but I'm sure he will have me back on track again.

I saw my gastro here last week and took another blood test. The other doctor had upped my iron to 300 mg a day, and it seems it might be finally kicking in as my hemoglobin is up to 9.4. This doctor wants me to get an iron infusion, but I think I would like to wait another few weeks to see if it continues to rise. I am ever hopeful.

UPDATE 9/27/2104: I have been in remission since 2010

My U.C. story and what helped back then.

Help for U.C. bleeding with Chinese herb Yunnan Baiyao.


Anonymous said...

Thank you for having the guts (ha-ha) to post this. It's such an embarrassing disease. I'm just beginning acupuncture for colitis and am trying to remain hopeful. I've used acupuncture before for another chronic condition and it worked when Western medicine--surgeries, drugs--did not. I've refused to take the drugs prescribed for colitis after reading the side effects, including hair loss. I mean, how much stress does you body have to be in for it to decide it doesn't need to or can't grow hair?

Incognito said...

Hi there, I wanted to share what has helped me over the years with flare ups because I was never able to find much help on the various alternative ways to heal UC.

I hope you will check out my other posts regarding herbal protocols for UC.

Am happy to say that I have been in remission since 2010. It was a long slog, but with acupuncture and herbal remedies I was able to get in remission.

I have stayed in remission because my trigger was cheese/dairy and I will only eat a bit of cream cheese on bread, because that never seemed to be a problem. But nothing else. Just not worth it.

And yes, i lost about half my hair when I took that prednisone in 2009. Thank goodness I had very thick hair, but I've never truly recovered from that. It never grew back. I would not have taken the prednisone had I not had a theatre gig in another city.

I wish you luck with the acupuncture. It has kept me on track since.

Also if you ever have bleeding, ask your Acu about Yunan Baiyao. Miracle herb.