Need treatment advice and perhaps a little shove

I am in the middle of a very bad flare. At the moment pain level is at an 8. Bleeding ranges from very little to almost half a cup of very bright red blood. Self-treating at home with pred and rowasa. We lost our unemployment health insurance so I can't go to the doctor. We don't qualify for medicaide because our unemployment payments are too high.
This flare has been going on for a month. I self-treated with 40 mg pred one week, 30 mg one week, 25 mg one week and now 20 mg. I also use nightly rowasa. I was getting better until the last three days. The pain went from a 4 to an 8, weakness has increased. D has started again, perhaps 6 to 9 times day. Pain is in lower left quadrant and my back.
I keep wanting to tough it out but maybe I am being stupid. What do you think?

Go see a GI. If it's not working now, then it probably won't work later.

I used to bleed a lot also and the only Rx that ever helped that was mesalamine enema which you are using already which tells me that your inflammation is severe. I don't think a walk-in clinic will have the expertise to help you, a hospital would however and hopefully not turn you away.
I am so sorry to hear about your health insurance situation because it makes your stress level even higher dealing with UC.

Have you ever tried diet modification? It's the only thing that has worked for my UC (except enemas) and given me my life back. No, it doesn't work for everyone but it could help (it didn't work the first time I tried). The SCD diet is healthy even beyond the UC benefits. Don't expect miracles although my bleeding stopped in just a few days after removing gluten.

Thank you everyone for your advice. Bleeding is even worse this morning. Called Drs office-turns out they have a charity fund for patients like me! I am so relieved. Will be seeing the doctor today.
Also I do eat a gluten free modified diet. It does help but stress is always an ugly trigger.

Yay! I'm so glad they are able to help you out. I agree with songlady, bleeding is definitely not something to be ignored. While you are there today, make sure you ask about samples or patient assistance for any drugs they want you to try. There is lots of help out there if you know where to look. I hope you are well on your way to feeling better.

Wow...that's awful this has happened to you. I hope you're able to get back on your feet quickly and get another job.

If it's not too personal, what was the position you were working?

q

Subzeromambo said...
I am in the middle of a very bad flare. At the moment pain level is at an 8. Bleeding ranges from very little to almost half a cup of very bright red blood. Self-treating at home with pred and rowasa. We lost our unemployment health insurance so I can't go to the doctor. We don't qualify for medicaide because our unemployment payments are too high.
This flare has been going on for a month. I self-treated with 40 mg pred one week, 30 mg one week, 25 mg one week and now 20 mg. I also use nightly rowasa. I was getting better until the last three days. The pain went from a 4 to an 8, weakness has increased. D has started again, perhaps 6 to 9 times day. Pain is in lower left quadrant and my back.
I keep wanting to tough it out but maybe I am being stupid. What do you think?

Your current situation sounds somewhat like mine, except no actual diarrhea. High pain but over whole gut, not in back. Lots of bleeding, but no real fecal bm. Finally I went to doctor and was put on exactly the same pred schedule as you mention above. No improvement. Went back and am now on prednisone 40mg for 14 days (beginning Thursday 10 Mar), 30mg for 14 days, 20mg for 14 days, 10mg for 14 days, and 5mg for 14 days. Changed diet on Friday. Saturday, Sunday and Monday slight improvement. Today too, however aggravated gut today with cornbread and margarine, and possibly the liquid from a beef stew.

Drastically changing my diet in conjunction with resumed 40mg pred dosage had a significantly positive affect. Boiled carrots and potatoes, unsweetened applesauce, banana, fresh baked white bread dipped in potato-carrot liquid, apple juice, papaya juice, Gatorade and water. A cigarette now and then doesn't seem to hurt at all. I'm going to try the plain chicken broth with fluffy rice and a bit of lemon that another poster mentioned.

40mg prednisone is in the high end, but I'm thinking that it might not be quite high enough. Am going back to doctor tomorrow or Thursday to consult.

Anyway, to repeat what others have said, prednisone, or any prescription UC drug for that matter, must be done only in conjunction with doctor supervised-prescribed schedule.

Rest, rest, rest is most important. Fill your mind only with nonstressful thoughts if possible. I use comedy movies. They seem to work.

One question: I'm curious about your diarrhea. Was it actual, largely fecal, diarrhea? Or just reddish brown liquid with bloody mucous clots and lots of bright red blood on toilet paper -- with a persistent feeling of having to defecate but unable to?

hmmm, green. Never had green before. The antibiotics sound like it might happen.

Hope you get some relief soon....it's good you were able to get in.

thanks for the update...
q

There's discussion of lemon juice on this thread. When I was flaring any citrus burned my gut. So be careful.

nice to read this...and really nice to see a GI seeing a patient in need same day! bravo. ......and that you're doing better. Hope it keeps up!

journey2health,
Thank you for the reminder. I can't handle citrus during a flare. I am going to stick with the low residue for a couple of weeks. Gluten, fats, dairy and red meat are also not part of my diet.
SZm