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Ulcerative Colitis
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Posted 12/4/2013 6:32 PM (GMT 0)
I'm back! Yay. Or not...

So I had my scope on Oct 1. On Oct 13, I was in Urgent Care with severe bowel bleeding (clots and at least a 1/2 cup of bright red blood in the toilet) but no pain and no fever. The doctor didn't even examine me, just told me to go to my normal doctor (didn't even tell me to go to a for real emergency room). It was two weeks after the scope, so I didn't think it was a complication from that.

Had my abdominal CT on Oct 18 with two contrasts, IV and ingested.

All of my tests came back negative and clear. The colonoscopy showed NO signs of inflammation at all... Complete remission. There was nothing on the CT. Yet I continued to have bleeding at least once a week, with or without a bowel movement, and never with what I would call a "strenuous" bm.

This past Thursday, I became fully symptomatic again, while taking 3200mg of Asacol orally. I have been off Pred (which was and wasn't helping) since the middle of October. I am afraid to eat (not to mention completely nauseated) because I know it will just result in more bathroom time.

I am at my wit's end. If I was in complete remission in October, what are the chances I have relapsed by now? Could it be something else? I am to call the GI tomorrow, and part of me wants to demand to be hospitalized until they figure it out.
Posted 12/4/2013 8:38 PM (GMT 0)
Looks like the pred put you into remission but the Asacol wasn't good enough to keep you there. Prednisone is not a cure. You will almost always relapse when tapering down or off unless your maintanence therapy (Asacol in your case) is good enough to keep you in remission. Since it wasn't you need a different plan next time around, which should probably include rectal meds. I hate to be a Gary downer but UC is a chronic disease, meaning a constant fight. If they put you in the hospital until they "figured it out" you could be there for years.
Posted 12/4/2013 9:44 PM (GMT 0)
I agree with Gary (unless you have a history of hemorrhoids or something). Prednisone masks your uc symptoms, in this case bleeding. It might have looked like you were in remission while on prednisone during your October scope. However, you gotta get off of prednisone before it can truly be considered remission.

I would contact your GI, tell him/her about the bleeding, and you might have to go back on pred, and up your other meds to get through this.
Posted 12/5/2013 12:48 AM (GMT 0)
So you're saying that I could have relapsed by now, even though it has only been a few months since they declared me in complete remission. I was afraid of that. I know that UC is a lifetime illness, but I didn't know how fast-acting it was. I thought it might take more time than two months to get back to this stage.

I honestly don't know if I could do another round of steroids. I have been off and on them for the last 6 months, and they have done some serious damage to the rest of my body, not to mention that they didn't *really* help, and as soon as I was under 30mg, I would start bleeding again.

My other thought was that it was something bacterial. I know C Diff is usually caused by antibiotics (which I haven't had in over a year) or hospital stays (which I haven't had other than the 3 hours for my scope, and I was good and sick by then). But I have been to the hospital a lot to visit my grandmother, who is ill and has been for about a year. And no one has tested me for bacterial or parasitic issues since they diagnosed me three years ago. Am I completely insane to be thinking it could be C Diff?

Editing to add: I have tried Asacol enemas, but they did squat. I think the next course of action may be Azathioprine
Posted 12/5/2013 2:08 AM (GMT 0)
I doubt in your case it is c-diff but it never hurts to get tested from time to time if you're having troubles. C-Diff is extremely miserable so if you're not going to the bathroom violently 20 - 30 times per day you probably don't have it, unless it is in the beginning stages. It's actually not all that easy to come down with unless you are immunocompromised or taking antibiotics.
Posted 12/5/2013 1:12 PM (GMT 0)
You said you were on Pred through mid-Oct? It seemed like for me, it took several weeks for the Pred. to fully wear off - perhaps that's your situation as to why you seem to feel better for a while when it's the drugs that are masking your symptoms.
I went through this cycle several times last year. Have symptoms, take Pred. feel better, get off Pred, symptoms return a few weeks later, get back on Pred...it was a vicious cycle. All the while taking Asacol as well.

Also, last Thursday was Thanksgiving. If you celebrated, you may have eaten something your body may have disagreed with or been under stress and that might have triggered it as well. What have you been eating? Even though I had a great time with my family last week, it was still stressful.
Fortunately my symptoms have been under control since starting SCD diet and undergoing 7-8 fecal transplants at home with my spouse so nothing bad came out of Thanksgiving dinner. However, I also didn't eat any gluten items and skipped ALL of the desserts that were out. I think that helped me greatly. Maybe you should start considering what you are putting into your body food-wise.
Posted 12/5/2013 1:37 PM (GMT 0)
Sure try the Azathioprine, it may be the key to keep you off of pred and keep the bleeding at bay. Just know it takes a few months for Azathioprine to build up to therapeutic levels in your body. There is no guarantee a remission-like state will last for long, could be months, weeks, etc.
Posted 12/5/2013 3:37 PM (GMT 0)

vanilla_bean said...
Editing to add: I have tried Asacol enemas, but they did squat. I think the next course of action may be Azathioprine

They never did for me either. Fortunately a different type does. Enemas are just like all the other meds. Some different types which may or may not work but you have to try them to see what helps.
Posted 12/5/2013 8:51 PM (GMT 0)
As I am Canadian, our Thanksgiving was actually in October, so I can't identify anything specific about Thursday that might have triggered my Colitis to flare, except that we made beer bread with actual beer, and I haven't had alcohol of any type in years. I don't know if something in that might have affected my bowel (the hops, the alcohol... though I think that gets gone with cooking?) And again, not knowing how long things take, I ate the beer bread and it was less than an hour later I was having my first bad bowel movement. And that seemed too quick for it to be the bread, but I don't know.

I just got off the phone with the GI, and I mentioned being TO the hospital a lot and he didn't seem too concerned. We are going to try Cortifoam to give the Asacol time to work, because I begged him not to give me Prednisone again in pill form, and he said I shouldn't get as many side effects with the rectal med.

In general, I am eating really well lately (since about August) as my husband and I implemented a food budget that means we are cooking at home more and making very balanced meals heavy on the veggies (well cooked, of course). I DO eat wheat products, because I love the taste of them, but I also eat a lot of fish and skinless chicken. I am borderline lactose intolerant, so there isn't a lot of straight milk in my diet, but it sneaks in elsewhere. And sugar is a vice.
Posted 12/5/2013 11:05 PM (GMT 0)
It wasn't the beer bread, or the bread or the wheat or any foods that would have made you flare.

I'd say it's because the pred got you into a clear scope state...and now that you're off it...you're flaring again.

It's unfortunate that the doc hasn't given you rectal meds before this....
I would have suggested to start with the mesalamine, but hopefully, the cortifoam will get the brunt of the inflammation under control. While you're tapering, I'd suggest you get onto the mesalamine enema. Then taper that to twice a week.

Using pred to get you out of a flare every time isn't going to be good in the long-run...but it was a good choice you made to insist to your doc not prescribe them again.

Try not to obsess about food....try to eat as balanced as possible.

q
Posted 12/14/2013 9:37 AM (GMT 0)
So, I had put off starting the enemas because I really hate enemas, they just disturb my life a lot.
I wanted to give the Asacol time to work, my doctor's words. I had been taking Percocet for the abdominal pain I was having and I noticed that it helped slow things down. The effect is wearing off now after about a week, but I wondered if anyone had any insight on this? I didn't get constipated or anything, and as soon as the Perc was out of my system, the bloody diarrhea, spasms, etc are back with a vengeance. I am breaking down and doing the enemas starting tomorrow, after I pick up disposable hand towels (since the applicator with these is reusable and has to be washed. BLECH!)
Posted 12/14/2013 1:55 PM (GMT 0)
Vanilla, sorry to hear about your symptoms returning.

For perspective I will tell you that symptoms can return VERY fast. I have been on Remicade since January 2012. In April of this year I delayed my Remicade infusion for just one week past the 8 week regular infusion time. Within 4-5 days I was bleeding, having stabbing pains in my colon, and the urgency returned to a point that it was hard to drive back and forth from my home to any place in town.

Unfortunately it is a chronic disease that will require constant trial and error to manage. I never had more than 2-3 months straight of symptom relief for 9 years until I was put on Remicade.

Best of luck to you. I know you'll get this flare nipped in the bud soon. You've got plenty of options left as far as I can see.
Posted 12/14/2013 6:27 PM (GMT 0)
sucks about the enemas, but I can't imagine them interfering more than the blood/diarrhea, etc.

q
Posted 12/14/2013 11:49 PM (GMT 0)
True, Quincy. I guess part of it is I am more embarrassed about the enemas than the symptoms. I was also hopeful to induce remission without steroids, but it isn't happening.

Thoreau - Thank you so much for the insight on symptoms returning quickly.
Posted 12/29/2013 11:23 AM (GMT 0)
Gah.
I hope everyone had a lovely holiday.
I am still flaring. Been using the Cortifoam once a day and NO improvement at all. Both of my doctors are on holidays until the new year (the 6th or so) and I am in so much distress from needing the bathroom I am at my wit's end again. I can't get oral prednisone from a walk-in, because they don't "know my history". Right, because I would be med-seeking for THAT drug. Tried upping it to twice a day, but have had trouble retaining the second application, just because I am going SO MUCH.

I am having 5+ bowel movements in a day (sometimes 5 in an hour... I will often not make it out of the bathroom between two), ranging from somewhat formed to completely liquid. All of them have blood, and there are times where I (miraculously) don't have a BM, but still pass blood. Blood is ever-present.
I am nauseated to the point where I am not eating much. I have skipped entire days of eating because my stomach is off. I am drinking water like no one's business. I wake up multiple times in the night to have bms.

To make everything worse, my stress levels are through the roof, as the in-laws arrive tomorrow and are staying with us for 6 days. Four people, one bathroom. I am kind of terrified.
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