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Ulcerative Colitis
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Posted 3/20/2010 2:39 PM (GMT 0)
Hi, all.
So, after the GI said, "No, you don't have UC"...and, we agreed on a 2 week trial of no asacol, I loaded up on probiotics, even did the probitoic enema. I stayed on Asacol for a few more days, and then I did it...STOPPED...no meds. Well, I continued with the same abnormal stools that I have been having (fuzzy, orange, very soft) for a few days, but I didn't get worse! Then, after 5 days, I was back to normal! Normal color, normal consistency...like this whole nightmare never even happened. BUT, of course it was too good to be true. After 3 days of being entirely normal and feeling better than I have in a long time, I got diarrhea. Today is day 2. I have had crampy pain every hour or two...even in the night, which wakes me from sleep. I had diarrhea yesterday morning and this morning. And, today, my bowel sounds are going crazy. I know I will have diarrhea again before the day is over. I am supremely afraid that I really do have UC and that the biopsies were only normal on 3/2 because I had been on Asacol. But, I just don't understand how I got BETTER after stopping the drug, and now have worse stool consistency than ever before! Is this what UC feels like? Cramps, gas and watery diarrhea? Gurgling guts so noisy that everyone can hear?

I have been reading Jini Patel's stuff and I am not sure how I feel about it. I have researched the oil of oregano and the probiotics, etc. But, if it is an infectious disease, why is she, the author, still taking all of this expensive stuff so many years later? If you kill everything bad and repopulate with the good, why would you have to keep at it forever? Does the immune system just keep fighting back at nothing? If so, then it really is an autoimmune disease, and one may as well just take the Rx's, as they probably end up being cheaper!

I went from being so cautiously optimistic the other day to just so destroyed over this. I thought I had my life back.
Posted 3/20/2010 3:21 PM (GMT 0)
How many probiotics are you taking? As in quantities, strains, etc. When you say loading up, I'm thinking you may have started taking too many to fast. Some people can just take probiotics no worries, others of us (like me) have to be careful with them - start very small and build up slowly the number of strains and quantities. In fact I have a friend who has some regularity issues who tried probiotics and he got super poopies from them and had to stop.

Consider stopping the probiotics for a few days or a week to see if that helps? You can always go back to them!
Posted 3/20/2010 3:39 PM (GMT 0)
I thought about that. Right before i went off of the asacol, i read something in Patel's materials that made a little bit of sense...that if more than 1 strain is packaged with another, they can kill each other. So, i stuck to just Dr Shehani's lacto for a few days, then went off. I took a few vsl during those first few days, baut as soon as I was normal again, i just stopped them. I am a terrible patient. As soon as I feel normal, I forget all of the badness that came before and feel like I need nothing else. I ate whatever I wanted and took no supplements. And, now I am in the situation that I am in...
Posted 3/20/2010 3:40 PM (GMT 0)
I agree that too many probiotics all at once can cause some upset-so that is something to look into.

My UC symptoms are similar to what you describe-but my flares always include a lot of bleeding as well. The loud bowel sounds, cramping, D, etc. And I have had times when I have gotten better and tried to re-create whatever I did to make that happen just to have things get worse-it seems there is just no rhyme or reason for things with this disease sometimes!!!

I would definitely be going back to the doctor about it-I had a period in the beginning of my disease where things got better on their own, but then things came back with a vengeance and I have been battling a much more severe case of the disease ever since.

Good luck!! I hope you don't in fact have UC and this is being caused by something else. Keep us posted!
Posted 3/20/2010 4:04 PM (GMT 0)
thanks...i will.
i am sorry for all of us having to go through this.
medicine isn't where it should be.
i hope everyone, whatever your political persuasion has told your reps that we need to fix things. We waist so much time on everything but what we need...quality and intensive research.
Posted 3/21/2010 1:14 AM (GMT 0)
Gosh, Doc, I am so sorry!

I've never gone off the asacol.... and I flare sometimes, though I've been quick to respond with meds when I've flared, and I guess that's why I've never had a flare needing hospitalization again since that first year.
I had UC for 20 years before I had pain (other than pain while literally passing stool, in the bathroom)... only in the past few years have I had that "stomach" pain and cramping.
The noise, yes... I'd wondered if the inflamed gut was somehow more resonant - the musician in me trying to figure that out.
When I first took VSL, after a few months I tried two packets a day and felt queasy, so I went back to one. But now I'm doing 2 packets of VSL DS per day, no issue. As Supa said, some of need to acclimate gradually to those.

I'd not tried supplements, etc until the past year - it was all western meds and prescriptions for me, and I've not done badly. I guess I've wanted to experiment on myself to see what relatively harmless products might bring me more relief. I've had moderate success with VSL and yogurt... but not enough to replace my prescriptions. I think you explained to me very well why the VSL can't just colonize and be stable... it is an ongoing auto-immune process.
Sigh.
Hang in there. This is a disease of such ups and downs and sometimes NO rhyme or reason to either. We humans so prefer logic - !
Posted 3/21/2010 2:14 AM (GMT 0)
Thanks.
Well, I am a shell of a woman tonight. After 6 bouts of acid like diarrhea, I am hungry, sad and my skin hurts. I just gave in and spent the $30 for Patel's e-book, listen to your gut...How can I not listen to it, it's so bleeping loud?!!!! I cannot understand how I could have normal mucosa on biopsy on march 2, have completely normal stool on march 17, 18 and 19, and now be in this shape today!

I restarted the Asacol and am hoping that if it is UC afterall, that the Asacol will start working. I will do clear liquids, too. Looks like I will be back in a 2-piece swimsuit by summer. Not exactly how I wanted to get there.

If anyone has a reason why I shouldn't try the oregano oil, etc, please let me know. You know I am desperate.
Posted 3/21/2010 5:38 AM (GMT 0)
I've been taking only acidophilus. I took a probiotic that had mutiliple strains before. It actually gave me diarrhea. Apparently, not all strains are created equal. There is even a strain for treating C-diff. It's casei GG.
Posted 3/21/2010 12:17 PM (GMT 0)
Hi Doc

I don't know your background except reading this thread so pardon if my questions are dumb. Have you kept a food journal? Have you tried removing the two biggest offenders: dairy and grains?

This disease is very baffling in that every day is different with no external changes on our part (we think) and no 2 people seem to respond the same. If you are in extreme situation then steroids can help but I don't read that you have bleeding (a good thing). My experience with GI's is that they don't get as anxious/worried as we UC'ers do about gas/diarhhea/insomnia. They aren't walking in our shoes and feeling our pain.

Best wishes.
Posted 3/21/2010 6:58 PM (GMT 0)
Hi Doc,
It's interesting to hear your perspective as a Dr. going through this. I come from a family of docs (I am not one) and since my daughter's diagnosis I have felt very disillusioned and let down by her GIs who have been dismissive, improperly informed, and condescending. This is part of what has led me to seek alternative treatment for my daughter. It is not easy and there are ups and downs. It's not as easy as popping some pred, I guess. I have read Jini Patel's books and have spoken to her and to several people who've used her protocols with success. Her books are recommended by the crohn's and colitis foundations in several countries. Unfortunately if you have UC (and I hope you don't), your choices are asacol and the prospect of moving up the drug ladder or trying things that have worked for others. I think Jini Patel's a good place to start.
Posted 3/21/2010 7:55 PM (GMT 0)
With respect to Jini Patel, she states that she has been med free for close to 20 years. My understanding of her approach is that the purpose of the various protocols and supplements is to (ideally) get your life back to normal in a way that doesn't involve continued dependency upon medications/supplements - prescription or otherwise.

The only other thing I can think to say is be patient and remain observant of your body and how it responds to various medicines/foods, etc.. I think it important to recognize that it may take time to see positive results, whether you follow a traditional or alternative path (or combination of both - as I do). I still have a few residual problems from a particularly bad flare that hit me a little over a year ago. I have steadily improved, but it certainly has not happened overnight.

My recommendation is to identify a strategy that feels right to you and stick with it for an extended period of time - even when you are feeling good. It may have taken years to get in your present condition and it may take an equal amount of time to get out.

One other thing popped into my head - I wouldn't rule out the colonoscopy itself having an impact upon your symptoms. My last colonoscopy sent me into a minor flare that took me a while to get under control.
Posted 3/21/2010 11:06 PM (GMT 0)
Thanks everyone...

So, after about 4 excruciating episodes of diarrhea yesterday, I broke down and swallowed some asacol. I fit in three doses yesterday. I also started the l-glutamine and wild oil of oregano. I had 2 more episodes of diarrhea, but saw no blood. I slept better, and only woke with cramps once. This morning, as soon as i woke, I had diarrhea, no blood. I continued with asacol, glutamine and oil of oregano. I had clear liquids for breakfast, then 2 hardboiled eggs, and after many hours of feeling totally normal in the gut (but hungry), i made some plain chicken burgers...on a plate. I have been bathroom free all day. No cramps. No gas. Could it be that Asacol really worked that fast? Or, is it the glutamine and oregano oil? Or, did I just have some virus that gave me diarrhea for a few days?

I have tried the food diary and got tested for allergies. I also was tested for celiac. Nothing makes sense. For those of you who are unfamiliar with my history, I got hemorrhagic pancolitis in July of '09 while on Moxatag (B-lactam antibiotic) for chronic Lyme Disease. I was hospitalized for 14 days. Rather than stating what I deemed fairly obvious...that it was antibiotic associated colitis...I was told that there was a 98% chance that I had UC. When I got back home (I was away when it happened), my new GI said he still had hope that it wasn't UC. And, the March 2, 2010 biopsies seemed to confirm that hope.

I have long thought that my flora is completely screwed up. I have been on so many antibiotics...and then, steroids. If my mucosa is normal, then why should I have diarrhea, unless this is true?

The health care system has no place in it for people who fall outside of the standard diagnoses. Because docs have to see 30-40 patients per day to stay afloat in their practices, they cannot have time for the "zebras". Only the horses...the routine. And, if the doc has never felt your symptom, they just can't possibly understand. Unfortunately, I have felt a lot of your pain and am very sympathetic. I hope that things get better for all of us.

Thanks for everyone's insight.

I am keeping my fingers crossed that the next BM will be better than the last (what has my life become?! ;) )
Posted 3/21/2010 11:49 PM (GMT 0)
Hi Doc -
whatever the reason, I am glad you're feeling better.
Last week my son seemed to be going into flare - he had 3-4 nights with waking 3-4 times for unformed stools, cramping.... and so he missed almost a whole week of school (Junior year of high school , argh)
We upped his asacol one pill, from 8 to 9 per day, and 3 days later, he seems fine. We are asking the same questions you just asked: it is the asacol working this fast, or was it a bug....? Will we ever know....?
I also started giving him one Ultimate Flora Critical Care every morning.

This has got to be one of the most frustrating diseases out there!

I appreciate your being part of this conversation.
Posted 3/22/2010 12:08 AM (GMT 0)
Whatever it is, glad you're better. Songlady, your son too! Doc, are you on a probiotic at all?
Posted 3/22/2010 12:13 AM (GMT 0)
FWIW I was tested for celiac and it was negative. But Jan 2010 I stopped eating gluten and my bleeding stopped, first time ever except while on steroids.
Stopping dairy eliminated majority of urgency issues and 10 weeks into diet I have no D except on rare occasions when I know I've chosen to eat/drink wrong stuff.

But it took me 10 years and many many tries to find this sweet spot. It is a very frustrating disease, a moving target. Asacol, 6mp never did anything to help. Steroids worked great for the time I was on them. Rowasa worked but a PITA to use.

I understand your frustration. Best wishes on finding what works for you.
Posted 3/22/2010 12:16 AM (GMT 0)
I have been taking probiotics much less regularly for the last week or so. Some on here suggest that too much may be bad. But, I guess I am supposed to take them while on oregano oil. I have a variety in my fridge...looks like a probiotic boutique in there! I think i will try once per day while on the oil and see what happens.

I don't want to have a "disease" and I don't want to have to take medicine. I just want to be a normal person. I am 37. I want to be able to have children in the next dew years.

I spent so much time becoming a doctor. I feel a responsibility to patients...myself included. Whatever I figure out, if anything, I will share with all of you. Those most motivated to find answers usually do. Unfortunately, the majority of the motivated folks are not research scientists. But, never underestimate the power of parents, sick individuals or sick doctors!

I have re-researched pretty much ever recommendation I can find. There seems decent evidence for the l-glutamine taken on an empty stomach with regards to mucosal lining cell health. The evidence for wild oregano oil (of high quality) is also good with regards to it's anti-inflammatory and antibiotic/antifungal/antiviral properties. I will continue to report on my experiences.
Posted 3/22/2010 12:21 AM (GMT 0)
Gardener...
I did 3 months with no dairy and no gluten...and, then I did the SCD...almost killed me. I was never closer to being back as an inpatient.
I am sure that food does play a role in many people, though I haven't decided why I think that. The immune system is an inriguing thing, and I am not sure we completely understand it. It's evolutionary bad design to have so many members of a species unable to eat/drink staple items. If we suddenly went back to little house on the prairie rather than McDonald's times, what would happen? Humans are meant to be able to eat everything. So, why does certain food seem to destroy so many? Something to ponder...
There has to be an answer to all of this stuff. It will be found. I just hope it's found soon for all of you and your kids.
Posted 3/22/2010 12:25 AM (GMT 0)
Doc, I agree. In fact, there's a book coming out at the end of the year called "Integrative Gastroenterology" by a John's Hopkins GI called Gerrard Mullin. He followed the standard treatment protocols until he developed an AI disease of his own and became a "difficult to treat" patient according to his docs. So, he turned to diet, supplements etc. and treated himself. The book is a part of Andrew Weil's Integrative Medicine series. Also, Jini Patel's coming out with a new book about a cardiologist who's daughter developed UC and was treated with the usual meds. He refuse do immuno suppress her because he knew what that meant as a doc and didn't want to chance it. He "healed" her with Jini's protocols. I look forward to reading both. Good luck and let us know how you're doing.
Posted 3/22/2010 12:34 AM (GMT 0)
Thanks...I will look for those books. It's so important to learn from each other. We're all mini experiments with an n of 1. We (in medicine) can never do all of the experiments we need to do. As you all well know, there's not a lot of money available for "alternative therapy" research. The big cash is in pharmaceuticals. I am not sure why big companies can't package things like oregano oil and glutamine, etc, into special packages and call them prescription drugs. They recently re-marketed doxycycline, one of the cheapest generic drugs around, for rosacea and are charging a ridiculous amount of money for it. It's insane. Why not encapsulate the oil in some fancy way and charge what they need to cover the research? At least then millions of people could benefit from the knowledge gained in controlled trials.

It's crazy that it takes a sick Hopkins GI guy to drive research that may help so many.

Thanks for the info.
Posted 3/22/2010 11:13 AM (GMT 0)
Based upon your history, I'm curious why you are taking oil of oregano if you suspect your condition is antibiotic related. I recognize that it has anti-inflammatory qualities, but unless you take it with a strong dose of probiotics, aren't you running the risk of your gut flora getting further out of whack (assuming that is the issue)?
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