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Part of colon resistant to meds?

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Posted 4/27/2016 2:28 PM (GMT 0)
I started flaring during my pregnancy in December of 2014. I had to start remicade. It put me in remission and I stayed there for 4 months. Then an antibiotic for a uti kicked in a flare. For the last 10 months I've been fighting it with everything. Things started to get better then a nurse gave me an antibiotic that made things terrible again. Had a c scope. Inflammation has stayed the same in the same spot the whole time. 5 inches at my rectum/sigmoid juncture.

Now on double dose of remicade, Lialda and steroid enemas as needed. During the last ten months I've tried Uceris and did a ten week prednisone taper. Countless enemas and suppositories. The enemas only reach so far as seen on scope.

The last few days things were great but now I'm having cramping and blood streaks on stool and tp. Frequency at 2 with formed stool and no urgency. This seems to happen every week or every other week. I get my next remicade dose Friday. My GI is saying my case is unique with 85% of a normal colon with a small segment that's resistant to meds. I have yet to get back into remission. Close to it but always a symptom popping up.

Has anyone ever heard of a portion of the colon being resistant? I honestly don't know where to go from here. I get remi Friday and getting a flex sig w gi Tuesday. I know I can push up frequency but the symptoms are on and off thru the whole 7 weeks I'm at now. I thought it was just really slow healing. Is this going to be how it is forever?? I know any type of inflammation is bad. I'm so emotionally exhausted.

Any input or insight is greatly appreciated.
Posted 4/27/2016 3:24 PM (GMT 0)
I think you're just going to have to wait and see how you do after your next infusion. You can have debilitating symptoms from a small spot of inflammation, so a portion resistant is never good. On the other hand, reading all this, about the drugs and the stress of ups and downs, made me really thankful for surgery. As much as I can say surgery is difficult and life after is not 2x a day formed, it has been so much easier than dealing with UC, drugs, doctors, worrying... I haven't taken a drug since my takedown and I live a much fuller life. I am able to eat whatever I want, go wherever I want. My life is no longer compromised. I am challenged with more BMs, but it's not something that causes me grief, pain, stress or struggle.
Posted 4/27/2016 3:27 PM (GMT 0)
I think they used to make a steroid foam, perhaps that might reach farther up if they
still make it. Pretty sure I used it at one time. Another option is to stand on your head for
like 5 minutes I used to do that too, gravity may help a little to get the meds higher.
Old Mike
Posted 4/27/2016 3:38 PM (GMT 0)
@nssg- yes I'm hoping the infusion calms it down again. I tapered off so much stuff the last 7 weeks. This time I don't have anything to taper. Would anyone even do surgery on me with 5 inches of inflammation??

@old Mike - yes I actually do stand on my head. Not for 5 minutes but I can try it longer. I have Uceris foam and cortifoam. I heard Uceris foam may go higher. Maybe I should give a chance.

I'm so down in the dumps.
Posted 4/27/2016 3:44 PM (GMT 0)
So sorry you are dealing with this! Sounds like you're doing the best you can! I'm curious to see what they do, as that is where I have a sever flare right now. Nothing is touching it so prob moving on to Remicade- which I really don't want to do.

Are you doing any suppositories in the am? Had the doc talked to you about surgery? I don't know if it's possible to do it down that low???

Sounds like you have a plan in place for now, which is good. Just hang tight until Fri and see how your treatment goes. When will you feel results of its done on Friday? Before your procedure next week? Hopefully that will give you some more feedback and help you plan this all out. Hopefully you have someone at home or friends that can help you talk through these decisions???

I've heard for the lower part, it's more blood and mucus and in the upper part of the colon is when the diharea kicks in. Not sure if that's true or not? But either way it's gotta be hard managing symptoms with a little one around, too. Anyhow, hang in there and let us know how it goes.
Posted 4/27/2016 3:58 PM (GMT 0)
Totes. Do you still take vsl#3 do you think it helps.
For me just about any probiotic makes me worse.
Just a thought.
OM
Posted 4/27/2016 4:11 PM (GMT 0)

TotesMagotes said...
@nssg- yes I'm hoping the infusion calms it down again. I tapered off so much stuff the last 7 weeks. This time I don't have anything to taper. Would anyone even do surgery on me with 5 inches of inflammation??

@old Mike - yes I actually do stand on my head. Not for 5 minutes but I can try it longer. I have Uceris foam and cortifoam. I heard Uceris foam may go higher. Maybe I should give a chance.

I'm so down in the dumps.

]

I believe suebear said she had surgery for a very small area of inflammation in her rectum. shakehead
Posted 4/27/2016 4:57 PM (GMT 0)
Unfortunately only time will tell. I ended up refractory. Hope your next remi dose does the trick. Good luck!
Posted 4/27/2016 4:59 PM (GMT 0)
@doggie- I love remicade. I know it sounds scary but it's seriously the only thing that's helped me. I know if I wasn't on it my flare would land me in the hospital. This one small spot of inflammation is driving me nuts. I should feel the effects over the weekend. It kicks in pretty quickly for me. So my GI should have a good idea of what's going on inside by next Tuesday. Suppositories have really not done much for me and enemas hit higher up where the spot is. I do have support but the reality is they don't fully understand the disease and wear on the body mind and emotions. Yes I have two little ones at home which can be challenging but they make my world go round and I honestly keep fighting for them.

@old Mike - I truly believe the only thing that works for me is remicade. Lialda and vsl are habitual at this point. My insurance will no longer cover the ds so when I run out I won't be able to get anymore. I'm dropping from two packets to one after my infusion. I'd love to stop the Lialda and my GI gave me the ok but of course it's scary to rock the boat. I want to be on nothing but the remicade.

@nssg- I'm going to bring up the surgery again when I see my GI Tuesday. I did have one consult before the holidays last year. I did not like the surgeon and he told me he wouldn't operate on me. I can't just leave the inflammation going. So we are going to have to do something. I'm praying the next infusion stops everything but I've been hoping that since I started double doses in October.

@byebye- how much of your colon was refractory? My colon looks like it's never been touched by uc except for this one spot. Makes me CRAZY.
Posted 4/27/2016 6:30 PM (GMT 0)
It makes more sense to talk about the part of the colon when talking about oral or rectal meds that act topically. In this case they don't reach the area.

In your case the inflammation is refractory irrespective of the location and extent of the inflammation. The remicade works systemically through your blood.

if the problem is severe enough in terms of unbearable symptoms or stage-0 cancer signs, then they will take out the whole colon because of just a small patch. Attempts to take out small segments of the colon generally resulted in inflammation re-appearing, so the practice shifted to complete colon removal.

You might find a surgeon who would do a partial, but your insurance might not cover a partial since it is not standard of care.

You could try a different mesalamine than Lialda to see if tweaking the release point helps get to that spot. Or, you could try 6mp in addition to the Remicade to push-through on that spot.

good luck

Post Edited (DBwithUC) : 4/27/2016 8:17:42 PM (GMT-6)

Posted 4/27/2016 7:43 PM (GMT 0)
[quote="@byebye- how much of your colon was refractory? My colon looks like it's never been touched by uc except for this one spot. Makes me CRAZY.


Ugh that's frustrating! My entire colon looked like ground up, bleeding hamburger meat. So it was pretty much beyond saving towards the end.
Posted 4/27/2016 8:35 PM (GMT 0)
@db- I'm a little confused by your post. First you say it's refractory then you suggest another 5 Asa or 6mp. Wouldn't that not make a difference if it was refractory? The issue is it gets better. So I'll go 2 weeks with things pretty normal than I'll have a couple days with symptoms. Does this mean refractory? And are resistant and refractory the same?

In regards to surgery if my symptoms are not dibilitating or have signs of cancer does that mean no surgery? Won't having inflammation coming and going there cause issues in the long run?

I'm seriously at a loss with what to do. I guess time will only tell if remicade can break through with a few more infusions. Or am I just being naive?

Also I tried 6 mp after diagnosis but it sent my liver enzymes crazy and never put me in remission. My first flare ended with Lialda and rowasa. Not so lucky after this pregnancy.
Posted 4/27/2016 11:40 PM (GMT 0)
I guess refractory can describe cases where you have response, but it's not response to the point where you're free of symptoms. I know some people are okay with having minimal symptoms ongoing. In my case, that wasn't an option, my symptoms were too severe - only steroids really got me to a functional level. I don't think I would worry too much about the low level inflammation, though it is not ideal, I would worry more about how you feel. With proper monitoring, I don't think non-debilitating symptoms should be reason for surgery. Many people do yearly scopes or bi-yearly and never end up with cancer, even in the presence of inflammation.

You also have the option of trying other biologics. Did you get the levels checked for remicade antibodies? If you've built up antibodies, humira or simponi might work well for you. There is always entyvio too. I think you should just stick with the remicade and see how much improvement you get. if you're at 100% for 4 weeks, then the response decreases, you could always move the infusions closer together. If you're just not responding enough that you're able to live a full life, it's time to move on and try other medications. If nothing works and you're unable to leave your home for fear of an accident, that is when surgery is actually necessary. Going 2x a day doesn't really warrant surgery. Of course it is the choice of the patient, but I would have fought on at 2x a day - unless it was urgent to the point that i had no control :)
Posted 4/28/2016 2:32 AM (GMT 0)
in this context i would say resistant and refractory are the same

i suppose reoccurring and refractory are different - but only in degree, not kind. there is poor/no management with meds.

also what is coming and going? symptoms or histological resistance?

i am not sure i understand the vocabulary question you are asking. ... same for surgery. i think anyone with persistent ibd could find a surgeon. but some surgeon might not operate if they felt it unnecessary, and my point was that some insurance or health care systems might not cover it until doctor documented medical necessity

why did last surgeon decline to take you as a patient?
Posted 4/28/2016 11:13 AM (GMT 0)
Yes my symptoms come and go. I'll go a week or two with just some mild cramping and nothing else then all of a sudden I'll have some mucus and then a tinge of blood. Then it goes away again. Back and forth. I'll use enemas as needed.

The surgeon said my symptoms and how small of an area didn't warrant taking out my entire colon.

I just don't understand why this area keeps coming and going with inflammation. Because there are times when it's better but it does just get worse again.
Posted 4/28/2016 11:33 AM (GMT 0)
Totes: Gonna take a wild guess, the spot where you mention is where stool is stored, so stool stasis
or just stool with bacteria sitting in this spot might be the problem. Mechanical irritation, or not enough
mucus, or you just cant get the meds to this spot.

Old Mike

Effect of sigmoid colon distension on the rectosigmoid junction. Description of the rectosigmoid junction tightening reflex and its clinical implications.

Shafik A1, El-Sibai O.



Author information



Abstract

PURPOSE:

The sigmoid colon (SC) is the site of stool storage. The stools accumulate in the SC until, at a certain volume, the mechanoreceptors in the SC wall are stimulated, evoking the sigmoidorectal junction inhibitory reflex with a resulting SC contraction, rectosigmoid junction (RSJ) relaxation and passage of the stools to the rectum. However, the RSJ status during stool accumulation in the SC has been scarcely addressed in the literature. The current study investigated this point.

METHODS:

A balloon-ended tube was introduced into the SC of 21 healthy volunteers [mean age (+/- SD) 36.8 +/- 10.3 years; 15 men and 6 women]. The pressures in the SC and RSJ were measured by means of a perfused tube, at rest and during balloon inflation with carbon dioxide at two rates: slow (3 ml/min) and rapid (150 ml/min). The tests were repeated after individual anesthetization of the SC and RSJ.

RESULTS:

During slow SC distension up to 80 ml included, the RSJ pressure progressively increased while the SC exhibited no pressure response (p > 0.05). At a distending volume of 100 ml, the pressure in the SC rose (p < 0. 01) and declined in the RSJ (p < 0.05), and the balloon was dispelled to the rectum. Rapid SC distension up to 40 ml included, effected no SC pressure response (p > 0.05) while the RSJ showed progressive pressure elevation. At 60 ml distension, the SC recorded a pressure rise (p < 0.001) and the RSJ a pressure decrease (p < 0. 05); the balloon was dispelled to the rectum. The pressure in the RSJ did not respond to distension of the anesthetized SC.

CONCLUSION:

The study has shown that, during accumulation of stools in the SC, leakage to the rectum seems to be prevented by a reflex action which we call 'rectosigmoid junction tightening reflex'. This reflex probably acts to control both storage and emptying of the SC contents. Reflex dysfunction might lead to defecation disorders. We suggest that the RSJ tightening reflex be included as an investigative tool in the diagnosis of defecation disorders.
Posted 4/28/2016 11:39 AM (GMT 0)
I'd throw an antibiotic at it, possible it's a limited infectious spot. Has it ever been biopsied?
Posted 4/28/2016 11:42 AM (GMT 0)
Thanks old Mike. This whole thing baffles me. I've never had a problem with my uc like this before.

Like today....perfectly formed normal stool. Cramping before I went with streak of blood and a little on tp. No mucus. Bizarre. Only went once so far.

So would switching my 5 Asa or adding an immunomodulator even have a chance of helping?

I'm really curious to see what happens after my infusion tomorrow. I think I will need to move up my infusions to at least 6 weeks from 7. Things start to slide at the end. I just hadn't had enough time to gauge things with all the tapering of things.
Posted 4/28/2016 11:46 AM (GMT 0)
@iPoop- yes it was biopsied in January during my c scope. He never mentioned anything weird about the biopsy. I will bring that up on Tuesday.

What antibiotic would've used? They always scare me since I tend to flare when I take them.

I want to get a stool test to rule out anything that could be bacteria related.
Posted 4/28/2016 11:50 AM (GMT 0)
Hey totes...
I have a resistant area too up by my hepatic fixture. I'm also on remicade and flared 6 months into remicade. I added imuran in February and it really seems to have made a difference. For the first time in months I'm virtually symptom free with just light cramping but no blood or urgency and one solid bm a day. But the true test will be in August when I have my colonoscopy. Has your dr mentioned adding imuran?

I agree with nssg about remicade antibody test. As far as surgery, I decided to meet with a surgeon and discuss my options. I'm really glad I did. Surgery isn't imminent but at least now I know my options and can make plans in case remicade and other options fail. Just having the consultation let me know what I'd be facing and I surprisingly feel more at ease.
Posted 4/28/2016 12:39 PM (GMT 0)
@kulinary- yes he mentioned 6 mp. But that messed up my liver. Maybe a low dose wouldn't do the same. Maybe I would metabolize imuran differently.

I'm asking for a stool test and remicade level/antibodies test for before my next infusion. I had one done in October and at that point I was on 5mg/kg. My levels were great w no antibodies.
Posted 4/28/2016 9:22 PM (GMT 0)
Totes, sorry to hear that pesky spot is still troubling you so much. Hang in there! Have you started work again yet?
Posted 4/29/2016 12:09 AM (GMT 0)
it is possible symptoms come and go but the inflammation has been constant. that would be refractory vs reoccuring.

i too remember suebear saying her surgery was ultimately because if a spot not much bigger than a quarter. ultimately it would depend on how unbearable the symptoms were.
Posted 4/29/2016 12:34 AM (GMT 0)
@mom- I did start. I quit after 2 days. The principal wasn't honest about the position. It wasn't right for me and after a 7th grader shouldered my aide I decided I wasn't comfortable being there. So my husband and I decided for me to stay home and look for something that would start in the new school year this September.

@db- ok now I get it. I really hope it's neither lol. I'm getting a flex sig Tuesday. So we will be able to see what's going on and compare it to my c scope and previous flex. I just need a break!!

So 2 questions about something you said earlier in the thread. You suggested 6 mp or another 5 Asa. If it is refractory would doing either of those help? Also do you know if it will forever stay refractory or could it start to respond and heal again? Ive been in remission before so it's healed in the past.
Posted 4/29/2016 12:58 AM (GMT 0)
I understand refractory just means won't/isn't responding. It is not like a condition that you get and then you have it. So I think there is always a chance of response in the future or if meds are mixed up. It may be that the longer something is refractory and the more things that have been tried, then the odds that it will ever respond go down. But even then, who knows when a new treatment turns up.

I had suggested a different 5-asa to maybe find one that reached that spot better - but few oral med are good that close to rectum.

You may be able to do a low does of 6mp mixed with allopurinol to make it metabolize different. It is possible what did not work on its own, could be effective at low dose in combination with a biologic.

good luck
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