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Is this "remission?"

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Ulcerative Colitis
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Posted 7/30/2015 3:25 PM (GMT 0)
I always thought that remission meant being mostly, if not entirely, symptom-free. Able to function at least.

My doctor insists that I'm in remission (scopes reveal mild proctitis, rather than severe left-sided colitis, which earlier scopes showed). I'm not having blood and mucus, but I'm still having pain, D, urgency, going 10-15 times a day, etc... My mornings are a nightmare thanks to urgency and public transportation.

Currently taking: Colazol, Welchol, Canasa, benefiber for UC, Neurontin and Klonopin (as needed) for anxiety, Wellbutrin for depression, zofran for nausea, B12 injections, CoQ10, NAC, zinc
I avoid eating lots of saturated fat, added sugars, anything fried

I've tried and failed on all of the other 5 ASAs, Uceris, Entocort, Cholestyramine, Cipro, Flagyl, the SCD diet, the low FODMAP diet, an elmination diet. Some success with prednisone, particularly at high doses.

So my question is: Is this the best I can expect or should I be pushing for more aggressive treatment? My doctor is very resistant to trying anything else and told me to seek a second opinion at the Cleveland Clinic the last time I saw him. I haven't done this yet since my insurance wouldn't cover it and I can't imagine missing even more work to travel.
Posted 7/30/2015 3:29 PM (GMT 0)
No, that's not remission. Pain, urgency and frequent bowel movements, plus proctitis are all signs you are not in remission. Also, why doesn't your doctor want to try azathioprine? It sounds like you get remission with prednisone and the other medication you're on is not enough to maintain remission.
Posted 7/30/2015 3:58 PM (GMT 0)
If you have to ask then, no you're not in remission. Remission, enables you to forget about uc. You're nearly the way you were before acquiring uc: 1-2 firm bms a day, without urgency, blood, mucus, etc.

It can get better, seek a second opinion.
Posted 7/30/2015 4:10 PM (GMT 0)
The times I was in remission, it was like I didn't have UC, except that I always had anxiety of seeing blood or mucous in the toilet. If you're rushing to the toilet, having bad mornings and your scope showed proctitis, you're not in remission.
Posted 7/30/2015 4:12 PM (GMT 0)
You're definitely not in remission!! For some patients even mild inflammation can cause major symptoms.

When you say you tried the low FODMAP diet did you cut out fructose as well? That's what my dietitian told me to do, I did the diet for 5 weeks before doing the reintroduction phase and found that diet had no impact on my gut (I have IBS as well as IBD) but that stress was the driving force of my IBS so I was glad to find out that I don't have any other food intolerance issues (besides being lactose intolerant which I use lactaid products for) low FODMAP isn't meant to be long term, it's designed to help determine if one has food intolerance's to any of the high FODMAP groups which is what gets reintroduced back into the diet after doing the low with no fructose diet for 5-6 weeks.
Posted 7/30/2015 4:35 PM (GMT 0)

FSLondon said...
Also, why doesn't your doctor want to try azathioprine? It sounds like you get remission with prednisone and the other medication you're on is not enough to maintain remission.

He's hesitant because I have a genetic condition that predisposes me to developing cancer. My oncologist has given me the go ahead for azathioprine, but my gastro says my inflammation isn't severe enough to warrant it.

I've actually switched doctors a few times (first one kept telling me I had IBS and missed the UC entirely- I ended up in the ER, the second one took about 2 weeks to return calls). I'm running out of in-network IBD specialists and our hospital is ranked within the top 10 in the nation for gastroenterology, otherwise I'd try a new gastroenterologist.
Posted 7/30/2015 4:40 PM (GMT 0)
Ah. That makes sense. That said, you're not in remission and what you're experiencing sounds pretty unpleasant.

I assume you've also tried the usual suspects of alternative options--supplements, oregano oil, probiotics? I don't think any will get you into remission, but they can help around the edges.
Posted 7/30/2015 4:42 PM (GMT 0)

pb4 said...

When you say you tried the low FODMAP diet did you cut out fructose as well? That's what my dietitian told me to do, I did the diet for 5 weeks before doing the reintroduction phase and found that diet had no impact on my gut (I have IBS as well as IBD) but that stress was the driving force of my IBS so I was glad to find out that I don't have any other food intolerance issues (besides being lactose intolerant which I use lactaid products for) low FODMAP isn't meant to be long term, it's designed to help determine if one has food intolerance's to any of the high FODMAP groups which is what gets reintroduced back into the diet after doing the low with no fructose diet for 5-6 weeks.

Yeah, I started on the FODMAP elimination diet and slowly reintroduced things. I worked with a nutritionist who reviewed my food logs; I wanted to make sure I was doing it right. Trial and error has taught me that lots of food and junk food tend to make my symptoms more unpleasant, but regardless of the diet, I still have lots of urgency, frequency, D, etc... My best bet is not eating or drinking at all during the work day and sticking to small, healthy meals at home.
I considered stress-related IBS too. Our IBD Center has a mental health clinic that works specifically with IBD patients, so I also see a psychiatrist and therapist. My anxiety and depression are caused by my symptoms though, so it sort of turns into a vicious cycle. I never had problems with mental health prior to the UC diagnosis.
Posted 7/30/2015 4:45 PM (GMT 0)

FSLondon said...

I assume you've also tried the usual suspects of alternative options--supplements, oregano oil, probiotics? I don't think any will get you into remission, but they can help around the edges.

Yup. Supplements don't seem to make a difference. I have an awful reaction to probiotics. I've tried many. Culturelle is particularly bad, but I can't even handle fermented foods or Activia.
Posted 7/30/2015 4:53 PM (GMT 0)
Same with my L Rachel, I too am seeing a therapist out of my GI clinic but it takes time to learn how to deal with stress/cope with it and anger issues as well...who knows, maybe you do have IBS as well, mine coexisted with my crohn's colitis so they can be experienced at once and that might be your case as well.

Either way I sure hope you find some resolution with what's going on and hopefully get your life back...it's definitely a work in progress.
Posted 7/30/2015 4:56 PM (GMT 0)

L Rachel said...
scopes reveal mild proctitis, I'm still having pain, D, urgency, going 10-15 times a day, etc... My mornings are a nightmare thanks to urgency and public transportation.

No, you're not in remission. That's an even worse copout than saying you have IBS. Your doctor doesn't know what to do so he is basically telling you that this is the best you can expect. If he was the patient he wouldn't accept that answer. Just because you have a genetic predisposition for cancer doesn't mean you will ever get it, even if on possible cancer causing drugs. It is a factor to consider though.
Posted 8/5/2015 2:53 PM (GMT 0)
As much as you don't want to hear this..and I HATE to say this...everyone is right...you ain't in remission.

We all have had these times when we love to think we are in remission, then something happens and it bursts our bubble. Remission is a sneaky ****** that slowly creeps up on you one day at a time, until one week you stop, and realize it's there. It sucks, it's terrible, but for all these years I have been sick and then been into remission, I NEVER EVER know or can remember when it has happen...I just realize that all of a sudden...HOLY COW...I'm in remission! I can't remember the day or time, it's just THERE.

But, I will tell you, the ultimate sign of remission is a perfectly clear colon that is quiescent and free of all active disease..not a dr telling you that you are 'mildly flared'....but, the fact that your recent scope shows you getting better..is GREAT...it's on the way down which is the best possible scenario.
Keep up your medicines, it is going in the right direction...one day you will wake up and realize that you are able to WAIT to use the bathroom and you will build from there...THAT'S the sign of impending remission!
Posted 8/5/2015 3:21 PM (GMT 0)
Just because the hospital is ranked highly in gastroenterology does not mean that all of its doctors are excellent GIs. Look into another doctor in the hospital, maybe the chief of GI or someone who is very prominent in the department.
I hope you can find a regimen that works for you as you are not in remission.
Also, I find his excuse for not giving you imuran odd because the risk of cancer associated with imuran are far lower than the risks of cancer for leaving inflammation in the colon.
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