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Posted 10/10/2011 11:29 PM (GMT 0)
Fecal transplantation was the first alternative treatment I tried, not the last. It made the most sense to me because I had abused antibiotics.

I don't want to give anyone false hopes, but I also don't think it could hurt to try. After that, it would be surgery.
Posted 10/11/2011 12:22 AM (GMT 0)
The best decision that my teenage son ever made was to have surgery.

I know what a terrible time you are going through and you should try every option that you want to. I just want you to know that even though a lot of people think that surgery is the worst possible option, our only regret is truly that we did not do it sooner. It has completely given my son his life back.
Posted 10/11/2011 3:41 AM (GMT 0)

MustLoveDogs said...
Vitamin D, melatonin and not eating breakfast as "fixes"? Seriously? This is the first time in my 43 years of living that I have heard someone say "eating breakfast is unnatural" and that it "aggrivates the GI tract"! So, not eating all day and then eating a big meal at night wouldn't "aggrivate" the GI tract? Please tell me how your colon knows whether it is day or night?? [img]/community/emoticons/confused.gif[/img] [img]/community/emoticons/confused.gif[/img]


Eating breakfast is a Westernized habit and look at all the disease in North America. Your colon knows whether its day or night based on the circadian rhythm (google if you dont know what it is). Thus its immunity and motility greatly depend on hormones and chemicals derived from vitamin D (made naturally by the sun) and melatonin (made naturally in the dark, which does exist unless you live on the middle of no wheres without electricity).

Dont eat all day except from 12pm-5pm. Thats more proper on the GI tract. Eating late makes your body think its day, thus messes up your circadian rhythm again.
Posted 10/11/2011 3:44 AM (GMT 0)
Thank you guys for all the advice and encouragement. I don't really want the surgery, but I am just exhausted. I feel like even if they could add more treatments I just can't handle it anymore. I'm so tired and discouraged. My husband and I have been married 3yrs, but with everything we have been through it feels like 40yrs. I'm just ready for some relief no matter what gives me that relief.
Posted 10/11/2011 5:28 AM (GMT 0)
Fully understandable. Surgery has saved a lot of people a lot of suffering. I've been in a state of constant flare ever since diagnosis in 2006. That's a five year flare running now, and it's severe, not moderate.

Personally I refuse to cut my gut out until I've exhausted every last option. To save you a lot of legwork on the alternative treatments discussed here:

1.) Fecal transplantation will almost certainly have to be done at home. The chances of finding a willing doctor stateside are almost nil. The protocol can be easily found on this forum.

2.) LDN may take some time to work, anywhere from 1 to 6 months. A list of prescribing doctors around the country is available. Some HW members have it. Just ask in any of the LDN forum threads. It is only about $30 for a month supply, and there's no chance of insurance covering it. Thank god its so cheap.

3.) Probiotics in massive doses in conjunction with psyllium seed powder could give you very quick relief. The psyllium will at least bulk up your stool and provide some leg room for managing your daily symptoms. Shoot for VSL #3 DS, the double strength version, that is prescription only and may be covered by insurance. No doubt neither your GI nor your pharmacy will have heard of it, so you will likely have to fight to get it through and covered under insurance. I am currently in the process of doing so with Kaiser Permanente.

4.) The combo antibiotics are based on a study out of Japan. Take the study abstract to your doctor when you bring it up. The abx may be the fastest and most easily accessed treatment out of the alternative ones listed here. If you go the abx route, make sure to supplement it with a strong course of probiotics to rebuild the killed off flora.

Some consider surgery like throwing in the towel and giving up, others consider it the best way to proactively handle your disease, and permanently. I at least consider surgery as the absolute last dash hope. Psyllium and LDN have put my colitis in a manageable state, and if I can get my hands on VSL3 DS covered by insurance, I believe that will be the last nail in the coffin.

We are all here with you. Remember that :-)
Posted 10/11/2011 11:41 AM (GMT 0)
It's funny when you are on the other side of surgery. I used to say the same things: that I wanted to try everything I could before having my colon removed (and I did). Now that I have had it done, I wish I hadn't waited so long and wasted my time suffering and taking dangerous drugs when surgery put an end to all that. But people wouldn't understand until they are on the other side....and how could anyone? It's a huge thing.
Posted 10/11/2011 4:49 PM (GMT 0)
Wow, you guys have giving me alot to think about. I appreciate it. Honestly, parts of me are leaning more to surgery b/c I am just worn out from all the meds, needles, colonoscopies,etc. I just don't think I can take much more.
Posted 10/15/2011 11:48 PM (GMT 0)
Jellybean,

Sorry for all of the anxiety. It is hard on the healing while in an angst way. Everyone seems to have some different things that work. The one hope is there has been successes. I was in your shoes, moments away from the snip snip. Anything was better than what I was going through. LDN worked for me and I am now about one month short of a year into remission. Knowing what I have read and if I were to relive this experience, I would be first in line for the fecal implant. Not to disparage the medical world but perhaps when you can do a therapy at home by yourself, there is not the profit associated with other medical procedures to warrant the expense of training and certification. Thus the lack of willing practitioners to embrace.

My LDN cost me but $25 per month.

I was being fed that my UC was because of stress. NOT. Certainly what you are going through is stressful but my mind told me something was out of sync in my colon and my gut. Bacteria.

Be strong in the true hope. I will pray for you.
Posted 10/16/2011 12:17 AM (GMT 0)
All this LDN talk
I really want to try it
I am so sick of this colitis

Post Edited (zinov) : 10/15/2011 6:36:12 PM (GMT-6)

Posted 10/16/2011 12:59 AM (GMT 0)
You can read my whole ugly story here with my remission, but I would do the fecal transplants first if doing over. Search out posts on fecal transplants. Think of it as inviting your friends back in.

https://www.healingwell.com/community/default.aspx?f=38&m=2099301
Posted 10/16/2011 12:12 PM (GMT 0)
jellybean,

It's a tough place you're in. I understand it well.

But the real question is: are you willing to try some last ditch efforts some have suggested BEFORE doing the surgery?

I would strongly urge you to try them as they have many success stories associated with them, after you've done some research - many have threads on this forum:

IMO,This is the order I would try them in, due to least cost, least invasive:

1) LDN - low dose naltrexone, combined with SCD diet - that combination should get your symptoms reduced by at least 50% within a few days.

2) Fecal Transplantaion done by a doctor.

I am in remission with LDN. And it didn't take long because I was already on SCD diet, it took less than a week.

I wish you the best, and am sure you will come to the right decision for you.

Let us know how you make out.

Posted 10/16/2011 4:49 PM (GMT 0)
Thanks for all the advice! I am leaving the hospital today even though I have reversed back some. So, I am scheduling surgery for next week. I have very afraid, but it seems this will be the best decision for me. I am weak & tired to try any more types of treatment. The surgery scares me to death, but for some reason I am with peace with it. I am ready for my life free of UC!
Posted 10/16/2011 5:49 PM (GMT 0)
I also think about surgery. I want to try LDN and if this will not help
I will go for surgery with fear like you
Posted 10/16/2011 6:47 PM (GMT 0)
Jellybean-

I know it's scary but believe me you will be so much better off when it's all said and done. I was where you are not that long ago so it's all fresh in my head. I was scared out of my mind. But once it's over you can breath a sigh of relief and kiss your UC good-bye! I can't tell you how much my life has changed having this surgery. No more messing around with drugs and strict diets. It is a blessing in disguise, trust me!!

Good luck with your surgery next week. May you have a very speedy recovery!
Posted 10/16/2011 7:11 PM (GMT 0)
ByeByeUC
Can I ask how many times people that had surgery go to the toilet?
I read 6 times a day. it still looks a lot to me to go for the rest of life six times a day
Posted 10/16/2011 7:20 PM (GMT 0)
This seems to be the million dollar question. I visit the restroom about 6x in a 24 hour period. I'm pretty text book with my results. It's hard to explain unless you have had the surgery. There is no urgency so you can hold and go when it's convenient. What ends up happening with me since I'm female is I empty whenever I have to go pee. A lot of times I don't even have the sensation that I have to go, but when I sit down to go pee I will try to empty whatever is there. As I said, it's kind of hard to explain. Let me put it this way, I don't think twice about where a bathroom is and my life certainly doesn't revolve around the toilet like it did with UC. I was going more than 20x a day with UC so 6x a day and not being sick is heaven to me! It just becomes your new normal. Hope this helps. :)
Posted 10/16/2011 10:15 PM (GMT 0)
zinov,

So you're going to pursue the LDN?

What about the camel milk? Did you see the links?

WHat do you think?

Posted 10/16/2011 10:22 PM (GMT 0)
Personally, I wouldn't worry about the six times a day. I pee at least that many times, so pooping each time, too, isn't a big deal, since it's quick and there is no pain associated with it, and one can hold it if need be.
Posted 10/17/2011 1:32 PM (GMT 0)
6 to 10 times a day after surgery? Most people dealing with UC have 6-10 a day as is!
That doesn't seem like much of an improvement after losing a crucial massive body part. My doc says many more people than is reported don't do well after surgery. Also, it seems to me that surgery is used as "cure-all" for UC which is definitely not!
Do your research before making such an important decision and best of luck to you
Posted 10/17/2011 1:41 PM (GMT 0)
beatUC,

Either your doctor is wrong or you misheard him. Jpouch surgery has a 90% plus satisfaction rate. My GI tried to talk me out of jpouch surgery and also told me I would be worse off than with UC. He was wrong!!!! I now wonder if he just wanted to keep me as a patient? I haven't had to see him since surgery and I consider that a success.

Frequency is about 6-8 times per day but it's not anything like having a colon. First, most of those incidents of emptying the pouch occur when one has to urinate. Do you know how many times you urinate in a day? I doubt you do. Also, the size and amount of waste is smaller than with a colon and passes much easier. To empty a jpouch is as fast as urinating; no prolonged periods of time spent on the toilet as a colon demands.

Surgery has been a CURE for me. Sure, some people still continue to have other problems and those with chronic pouchitis tend to be dx with Crohn's later on. But in 10 years I haven't met anyone who regretted their decision to have surgery even if they later had to revert to an ostomy. Not one person, with sufficient recovery, has ever said they would prefer to have their UC back.

I engage in 100-200 mile hikes across international lands. I could never to this with UC. I feel grateful and blessed that I was given an option. Not everyone will need to have surgery but for those that do there is a better life waiting.

Yes, as with any large decision, do your research. But please stop spreading misinformation about this surgery. Since you haven't had it you are speaking from an uniformed position.

Sue
Posted 10/17/2011 2:00 PM (GMT 0)

beatUC said...
6 to 10 times a day after surgery? Most people dealing with UC have 6-10 a day as is!
That doesn't seem like much of an improvement after losing a crucial massive body part. My doc says many more people than is reported don't do well after surgery. Also, it seems to me that surgery is used as "cure-all" for UC which is definitely not!
Do your research before making such an important decision and best of luck to you

Oh my gosh...this is such a close minded stated. Please, I was trying to explain to a poster that asked what it is like. It isn't anything like having a BM with UC and you are NOT SICK ANYMORE. You cannot compare the two. Oh, and your doctor is very misinformed if that's what he/she thinks.
Posted 10/17/2011 2:00 PM (GMT 0)
Suebear, I am glad it's all worked out for you, but for very many, things are not so great after surgery, My doc has more experience with large groups of patients and the outcomes that you will ever have.
I am not spreading misinformation at all. here is a large , population based studies on the subject:
http://www.ibdsupport.org/forums/topic/116136-help-post-surgery-nightmare/

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

"The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology."
"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."
Please read this study, do your research and don't let anyone influence your choices dealing with your disease,
make up your own mind!
Posted 10/17/2011 2:55 PM (GMT 0)
beatuc,

Your first link is not a study but discussion from those who were diagnosed with Crohn's after having undergone surgery for UC. It's true that there are those who's Crohn's diagnosis does not appear until after surgery, sometimes years after surgery. And yes, the jpouch or the kpouch is not a viable option for Crohns although there are many a Chron's patients living full lives with their jpouch and continuing to control their Crohns symptoms with maintenance medications.

The second link of the study of 348 patients from 1940-2001 is interesting from the standpoint that it's a limited study. The jpouch surgery was perfected at the Mayo in 1988. Since its inception it has been improved upon like all other surgeries. There have been advanced techniques to the surgery since I had surgery 10 years ago. Even though there are complications from jpouch surgery, most can be corrected. And complications occur in ALL surgeries, not just this one.

As I have stated numerous times, the best chance of a successful outcome comes from having a very experienced CR surgeon, one with lots of jpouch experience. The surgery is one of the most complex surgeries out there. No one should ever contemplate having this surgery at a local community hospital, the VA, or through Medicare.

Sue
Posted 10/17/2011 2:59 PM (GMT 0)
What does the fistula post have to do with colectomy? The "post surgery nightmare" link took me to a post where the OP had fistula surgery, not a colectomy.

And what you posted is just ONE study. Here's a pretty interesting one which shows that UCers who have had a colectomy were happier with the colectomy than they would be if they still had UC:
http://www.nature.com/ajg/journal/v106/n4/full/ajg201139a.html

In my opinion, what's missing from that article you link to is what the patiens think.  Are they happier with the surgery, despite complications, than they were with UC?  That's the key, I think.  The experience of people on here suggests so (and some have had complications) and the article I linked suggests so as well. 

I'd also like to say that 6-10 BM's a day that are without pain or urgency, as it is with a j-pouch, is far, far, far better than even one BM a day with urgency and pain, in my mind.  It's the urgency that really bothered me when I was flaring, not the frequency (I didn't have pain).

Posted 10/17/2011 4:41 PM (GMT 0)
What really jumps out at me, is the additional surgery numbers ("The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn.")
For those of you who have had surgery and it's helped your quality of life, well, good for you, but I think anyone considering surgery should have as much information available to them as possible, both good and bad.
Also, as a patient that was pushed really hard towards surgery, it would have been a mistake and I wonder how many others are pushed in a similar way.
All this being said, I am not anti-surgery at all, for those who need it, it's a blessing and a relief. The finer point here is, do you really need it and will your UC get better with time and meds, because as we all know, theres no going back.
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