HealingWell
Search Close Search
☰

Almost ready to give up on my colon

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/27/2014 7:42 PM (GMT 0)
I have tried so many things:
Mesalamine, courses of prednisone, and Humira to no effect. I've stuck to SCD/Paleo for half a year. LDN. Homegrown probiotics. VSL#3DS. An elemental diet. Two months ago I was on my last legs, ready to have colectomy.

Then a round of Cipro and Flagyl magically gave me my first remission and brought my CRP to 0. And now I'm relapsing after a month and a half. I can't stay on antibiotics...

At this point, my options are
1) Entyvio. I have failed all previous immunosuppressive therapy and don't like it. I also can't know how many (potential) years of remission it can offer me while I wait for a real, safe, enduring treatment option.
2) Infect myself with helminths. Sounds too dangerous to me without promising results.
3) Fecal transplant. It makes sense given that antibiotics work. That said, it's obviously a terrible experience and may still not work.
4) J-pouch. I don't want to do this unless I have to.
Posted 10/27/2014 8:01 PM (GMT 0)
Why did you start taking Cipro and Flagyl? Did you have c.diff or something else? normally they don't work for UC flares.
Posted 10/27/2014 8:18 PM (GMT 0)
It sounds like maybe you should consult with a new GI. From my understanding it is a little unusual that Cipro and Flagyl worked to bring your flare into remission. (I am not a doctor or nurse).

Maybe a new GI could confirm: 1. You do not have any secondary infections and 2. There are no new combinations/doses of drugs you could try.

Also, I don't think surgery is such a bad thing if you get there and you need it. There are a lot of people who've had their colons removed and they're living full, happy, and healthy lives. Maybe you could find a support group for people in your area grappling with this decision? If you live near a major hospital they may have one.

I'm interested too- did the Paleo/SCD diet make a difference for you? When I tried Paleo it put me into a flare. I did not do well on Paleo.
Posted 10/27/2014 9:43 PM (GMT 0)
It's unusual, but not unheard of. I never got into full remission but Cipro was the only thing that ever made me feel better besides high doses of prednisone.

That said, you definitely want to make sure that you've been thoroughly stool tested -- for C. diff and CMV especially -- before making any big decisions. If by any chance you DO have C. diff, then FMT could be appropriate, or a round of vancomycin or Dificid.

I don't know your situation and I'm not recommending surgery, but I had surgery and I am very happy with my results.
Posted 10/27/2014 9:51 PM (GMT 0)
I had a similar thing with antibiotics while I was in a bad flare. They were the closest I ever came to feeling like I was in a remission. I was on doxycyline for Lyme's disease and my UC symptoms were almost non existent while on it. They came back once I was off of it. But as you point out, you can't stay on antibiotics forever.

Only you know if surgery is right for you. No one can tell you that. I will just say that I had j pouch surgery four years ago and it's been such a blessing. I'm really happy with my results. Good luck.
Posted 10/27/2014 11:39 PM (GMT 0)
Flagyl also put me into a full remission and I felt completely normal outside of flagyl's side effects, which did make me feel pretty gross.

It makes me wonder if for the few of us with a great response to flagyl...if our immune systems have lost tolerance to the bacteria/protozoa that flagyl is known for killing.

I think if you're considering getting your colon removed, I would go on flagyl again and just to see if it could induce remission again. I know its not a long term plan, but that is just what I would do in that situation, out of curiosity.

More practically, entyvio seems to have a pretty good safety profile and is gut specific so if it gives you a few extra years with your colon, it might be worth it to see what the treatment landscape looks like in the future.

Fecal transplants may also be helpful, but in my opinion, for something like UC where we might be reacting to certain normal gut bacteria, it may make the problem worse. But it could also help. If the donor's stool doesn't bother you, then keeping the donor constant may be a good idea.

Basically if I were at my ropes end, I would try anything I could, unless I just needed to feel better NOW.
Posted 10/28/2014 12:05 AM (GMT 0)
my gi doc has some patients on long term antibiotics as their maintenance med because they do so well on them. could you do that?
Posted 10/28/2014 1:40 AM (GMT 0)
It seems like somebody somewhere could do some calculating in these cases. With most all antibiotics it is known what particular pathogens they kill so if you did an in depth analysis of your gut bacteria beforehand and correlated it with the bacteria that certain antibiotics kill and do another in depth analysis when these patients feel better after the antibiotic course then they could see some kind of pattern for treating the disease. Unfortunately, this is just too much work for the doctors. This is along the lines of what I mean when I say that the doctors don't do any doctoring. In many cases people just don't know what causes or triggers their disease but if it is obvious that in these certain patients where antibiotic therapy is effective, at least short term, then there is an opportunity to make some real progress and yet no one anywhere seems to take the bull by the horns and just do it.
Posted 10/28/2014 1:46 AM (GMT 0)

garylouisville said...
It seems like somebody somewhere could do some calculating in these cases. With most all antibiotics it is known what particular pathogens they kill so if you did an in depth analysis of your gut bacteria beforehand and correlated it with the bacteria that certain antibiotics kill and do another in depth analysis when these patients feel better after the antibiotic course then they could see some kind of pattern for treating the disease. Unfortunately, this is just too much work for the doctors. This is along the lines of what I mean when I say that the doctors don't do any doctoring. In many cases people just don't know what causes or triggers their disease but if it is obvious that in these certain patients where antibiotic therapy is effective, at least short term, then there is an opportunity to make some real progress and yet no one anywhere seems to take the bull by the horns and just do it.

this is bunk. you have doctors and medical researchers confused. some specialists also do research or some research clinicians see patients - but very small number. You are offering an invented definition for "doctoring" that seems to involve heavy research and analysis, then you disparage them as not wanting to do hard work. Some docs do suck, but this is so wrong.
Posted 10/28/2014 2:57 AM (GMT 0)
I've been tested for secondary infections and we haven't found anything. We're testing again, although I guess the renewal of antibiotics could mess up the results. SCD did just not seem to do very much. I have had periods of being extremely strict (nothing but carrots and meat for a while...) that seemed to have no benefit while also having times where I've entertained occasional cheats and generally been liberal without consequence (antibiotics allowed me to eat anything). That said, I keep 99% Paleo.

FMT really poses no risk outside of just being another failure. I wonder if my miraculous improvement on antibiotics strongly indicates FMT for me.

My doctor says I'll be visiting my surgeon (Dr. Wexner) in the next six months. It just seems so irresponsible to role dice that big until it is the last resort. It is probably the most effective response to UC and may allow me to put all this behind me. If it goes wrong though, I will have wrecked my life.

The bottom line is that I can't live on this rollercoaster, researching and fighting month after month. I'm a young man, fresh out of university, and there is a life and ambitions ahead of me that I am wasting at home and in the doctor's office.
Posted 10/28/2014 5:10 AM (GMT 0)

SolomonSeal said...
I've been tested for secondary infections and we haven't found anything. We're testing again, although I guess the renewal of antibiotics could mess up the results. SCD did just not seem to do very much. I have had periods of being extremely strict (nothing but carrots and meat for a while...) that seemed to have no benefit while also having times where I've entertained occasional cheats and generally been liberal without consequence (antibiotics allowed me to eat anything). That said, I keep 99% Paleo.

FMT really poses no risk outside of just being another failure. I wonder if my miraculous improvement on antibiotics strongly indicates FMT for me.

My doctor says I'll be visiting my surgeon (Dr. Wexner) in the next six months. It just seems so irresponsible to role dice that big until it is the last resort. It is probably the most effective response to UC and may allow me to put all this behind me. If it goes wrong though, I will have wrecked my life.

The bottom line is that I can't live on this rollercoaster, researching and fighting month after month. I'm a young man, fresh out of university, and there is a life and ambitions ahead of me that I am wasting at home and in the doctor's office.

I hear your sentiments loud and clear, man. I just turned 22 and on my birthday it hit me that this thing is gonna be for life.

Most people I've read about that had surgery were happy they had it and it seems like they have gotten their lives back. Of course, life w/o a colon is probably different, but it seems to be preferable to life with serious UC!

Don't think your life will be over if things go bad, people (including you!) are incredibly adaptive and get used to things and can live life around the things that hold us down. With surgery, you will likely get a more predictable, stable life. Instability and uncertainty is what makes UC so difficult to deal with, and without your body attacking your colon, the cycle of remission and flares is gone for you. Even if you don't feel as you do pre-UC, you'll still have a way better and stable quality of life than life in a UC flare.
Posted 10/28/2014 5:46 AM (GMT 0)
I feel your pain. After a long fight, my daughter gave her colon back on her 21st birthday. So far, she is ok, and feeling better. It isn't a cakewalk tho. Don't let yourself get so sick that surgery is done on an emergency basis. Perhaps see a surgeon to start understanding it, just in case.
Entyvio is a good option, but takes time to work. Get on it if you are going to try it.You may still need a bridge therapy.
Another consideration is Tacrolimious, it isn't too common, but works.
Re:Fecal transplantation, there ARE risks. It works best if there really is c-diff. Look into it, early studies were not without dangers. Can't offer much on the antibiotic therapy, but I do hope you are with a high level GI Practice that specializes in IBD. Sounds like you have really been trying.
Best to you on this crummy journey.
Posted 10/28/2014 10:59 AM (GMT 0)

garylouisville said...
It seems like somebody somewhere could do some calculating in these cases. With most all antibiotics it is known what particular pathogens they kill so if you did an in depth analysis of your gut bacteria beforehand and correlated it with the bacteria that certain antibiotics kill and do another in depth analysis when these patients feel better after the antibiotic course then they could see some kind of pattern for treating the disease. Unfortunately, this is just too much work for the doctors. This is along the lines of what I mean when I say that the doctors don't do any doctoring. In many cases people just don't know what causes or triggers their disease but if it is obvious that in these certain patients where antibiotic therapy is effective, at least short term, then there is an opportunity to make some real progress and yet no one anywhere seems to take the bull by the horns and just do it.

It's not "just too much work," it would be an experimental treatment. There are clinician researchers who are conducting studies along these lines, but performing an experimental treatment on one patient is not "doctoring."
Posted 10/28/2014 12:01 PM (GMT 0)

Katmom said...
I feel your pain. After a long fight, my daughter gave her colon back on her 21st birthday. So far, she is ok, and feeling better. It isn't a cakewalk tho. Don't let yourself get so sick that surgery is done on an emergency basis. Perhaps see a surgeon to start understanding it, just in case.
Entyvio is a good option, but takes time to work. Get on it if you are going to try it.You may still need a bridge therapy.
Another consideration is Tacrolimious, it isn't too common, but works.
Re:Fecal transplantation, there ARE risks. It works best if there really is c-diff. Look into it, early studies were not without dangers. Can't offer much on the antibiotic therapy, but I do hope you are with a high level GI Practice that specializes in IBD. Sounds like you have really been trying.
Best to you on this crummy journey.

FMT, if done correctly (proper screening, evaluation of donor history, adherence to protocol) should be fairly harmless. Here is Borody's paper on patients with severe refractory UC who were cured by it.

I can't help but think this option should be tried if he is responding to nothing else.

The fear mongering is generally done by doctors who have ties to pharmaceutical companies.
Posted 10/28/2014 12:22 PM (GMT 0)
The person who started this thread also found temporary relief through using Cipro:

www.healingwell.com/community/default.aspx?f=38&m=3223623&g=3224402#m3224402
Posted 10/28/2014 3:41 PM (GMT 0)

Guardian7 said...

FMT, if done correctly (proper screening, evaluation of donor history, adherence to protocol) should be fairly harmless. Here is Borody's paper on patients with severe refractory UC who were cured by it.

Not trying to pick a fight with you but I find any statement that uses the words "cure" and "UC" in the same sentence hard to believe. Even surgery isn't a cure for UC.

When I had surgery, I meet someone in the hospital who also had surgery about the same time that I did and he said that the FT fixed his c.diff but made his UC so much worse...I don't know the particulars about his FT but there is always a risk with any medication/treatment.
Posted 10/28/2014 3:56 PM (GMT 0)

bananagirl said...
my gi doc has some patients on long term antibiotics as their maintenance med because they do so well on them. could you do that?

I'm currently on Flagyl for C.diff and pouchitis, my symptoms are gone but I'm waiting for the GI to give me the ok to stop the Flagyl, hopefully a couple more days. Now that I am asymptomatic I can feel the effects of the Flagyl and it not fun, totally miserable from the exhausted from the Flagyl and I wouldn't want to be on it long-term.
Posted 10/29/2014 1:14 AM (GMT 0)
There are people who enter indefinite remissions from FMT... sounds like a cure for some. Like some other posters have said, the idea is to depopulate with antibiotics and powerfully repopulate with FMT. I think the main risk is doing something to mess up your gut flora more (which I find unlikely if you do any kind of donor screening). For someone facing surgery, this doesn't really matter anyways.

My protocol will make use of N-acetyl cysteine biofilm disruptors, following antibiotic pretreatment before blood levels fall before therapeutic (so less than 12 hours), and taking prednisone to prevent immune rejection of the "transplantation."

My surgeon already has all the diagnostics necessary and only needs a phone call for us to get rolling.

2015 Resolution: leave home healthy.
Posted 10/29/2014 3:15 AM (GMT 0)
I would stay away from Cipro. That medication scares me more than this disease. When used properly, and for the right illness, it can help though.

You never explained how long you were on these medications.

FMT could work, when done properly. As long as you get the proper screening and tests, and conduct the treatment correctly, it may help.

Also, some people do have issues with probiotics. What about Imuran? Some do better on that medication than they do on Humira or Remicade.
Posted 10/29/2014 5:33 AM (GMT 0)
Hey, just wanted to chime in and say hope you're feeling better, and that I'm kind of in a similar boat with being frustrated at not knowing how long the biologics can give you in terms of years of remission. Cipro and Flagyl did nothing for me when I was hospitalized with my first flare, but I'm happy they provided you with some relief! The advice above is good, and just wanted to echo I think its important you act quick and get on some sort of bridge therapy if you can (ex: pred) or another biologic while you get healthy and can make a better decision about the long term. I know you mentioned you failed Humira, but have you tried Remicade? I know for many people it gives them many great years of remission and although I am unsure how much longer I can be on it myself, it worked really well for over a year in my case. The advantage is that it also tends to work quickly from what I hear (in my case was immediate) and might be able to help you feel better at least while you consider your options going forward! In any case just wanted to say I really hope you get well soon and wish we didn't have to be on this shi--y journey haha.
Posted 10/29/2014 3:52 PM (GMT 0)
Surgery should be a last resort....it is possible for the colon to heal itself if it's allowed to. I have tried Remicade, Canasa (sp) and a few other things in the past that helped at first , them stopped working. Eventually, I went on my own and I have colitis under control...there are still hiccups , but that's only when I slack off on my routine. My colon healed itself to the point where my gastroenterologist can only tell I have colitis by looking at my blood results. I firmly believe colitis is "maintained", by a hormone imbalance...specifically the "Cortisol" hormone...at the very least you should look into it.
Posted 10/29/2014 4:24 PM (GMT 0)
Last year a doctor wanted me to go on Cipro for a urinary tract infection. I told him my reservations about that particular antibiotic and he seemed surprised with my knowledge and seemed to acknowledge that some have had some major troubles with the drug and we went through a list until we found one that I agreed to take. What scares me is that for patients without much medical knowledge how easily it is to get prescribed something which the doctor is already aware of causing some major problems with a percentage of the population. Sometimes they are nothing more than robots and if you have a major reaction to a drug such as Cipro, well, that's you and another doctor's problem, not their's.
Posted 10/29/2014 7:23 PM (GMT 0)

NuffinButtTrouble said...
Surgery should be a last resort....it is possible for the colon to heal itself if it's allowed to.

Not in all cases buddy, sorry. There are some people that no matter what is done, it's not going to work. I'm proof of that and I know many others like me too. It's just not that simple with severe cases.
Posted 10/29/2014 8:11 PM (GMT 0)

ByeByeUC said...

NuffinButtTrouble said...
Surgery should be a last resort....it is possible for the colon to heal itself if it's allowed to.

Not in all cases buddy, sorry. There are some people that no matter what is done, it's not going to work. I'm proof of that and I know many others like me too. It's just not that simple with severe cases.

70% off all UC patients do not need their colons removed but the remaining ~30% don't have surgery just because of UC but some of us need to have our colons removed due to pre-cancer polyps or actual cancer. That's why it is so important to go for C-scopes because we are at high risk for colon cancer.

From the time I was diagnosed with severe Pan-colitis that required hospitalizations I always knew at some point that I'd most-likely need surgery because of the UC and also that both of my grandfathers had colon cancer. Now that I had surgery(due to flares) I feel the best that I have felt since I was dxd with UC and I no longer have to worry about colon cancer some distant day. I'll still follow up with my GI annually because I have a j-pouch.
Posted 10/29/2014 8:19 PM (GMT 0)

NuffinButtTrouble said...
Surgery should be a last resort....it is possible for the colon to heal itself if it's allowed to.

Of course the colon will heal itself if it's allowed to.

Now try telling that to the crappy immune system which won't stop attacking it.
✚ New Topic ✚ Reply