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Need treatment advice and perhaps a little shove

Chronic Illness Forums
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Ulcerative Colitis
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/14/2011 10:17 PM (GMT -7)
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?
Diagnosed 1988 with lower left colitis. Hospitalized often. Worst case: mega toxic pan colitis Dec. 1999. Latest hospitalization: Sept. twice, Oct. twice, Nov. once. Current meds: Citalopram, alprazolam, imuran, prednisone. Supplements: multi-vitamin, calcium citrate, vitamin D, folic acid. Four children. Two live births. Asthma, anxiety, depression.
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subdued
Veteran Member
Joined : Dec 2008
Posts : 3231
Posted 3/14/2011 10:30 PM (GMT -7)
You should not be self-treating yourself with prednisone.

I, too, have gone without insurance; so I know what that's like. Still, you should not be self-treating yourself with prednisone. It's a strong medication and is not meant to be used every time you get a flare.

IBD is not something you try to tough it out either.

Go see a GI.
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blueclassring
Regular Member
Joined : Missing Key Value : en-US, 577 2007
Posts : 385
Posted 3/14/2011 10:52 PM (GMT -7)
Go see a GI. If it's not working now, then it probably won't work later.





Flaring again(2/11) but started on Specific Carbohydrate diet. Finished prednisone taper 2/28/11.
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Christine1946
Veteran Member
Joined : Aug 2008
Posts : 5982
Posted 3/15/2011 5:37 AM (GMT -7)
     Best to see a GI doctor.  Is there a medical clinic nearby?  When I had to take prednisone, I usually tapered 5 mgm per week.  Any quicker and my symptoms returned.
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imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5884
Posted 3/15/2011 5:58 AM (GMT -7)
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.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel, mesalamine enema as needed
Spinach daily, (1) VSL#3 nightly
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run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 3/15/2011 7:08 AM (GMT -7)
You need to see a GI and if that isn't possible because of the insurance situation, then you need to go to hospital. I understand as I was without insurance for 10 years (thankfully before I had UC) but they will not turn you away at the hospital. You need help as what you are doing is not working. Good luck to you.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 9:34 AM (GMT -7)
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.
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3776
Posted 3/15/2011 9:38 AM (GMT -7)
Let us know how it goes! I'm glad you are going to see someone - a lot of bleeding is not to be fooled around with.
Co-Moderator, UC Forum
Age 55. Diagnosed UP 1983, UC 1986
Asacol - 16 pills/day,
Rowasa and Canasa occasionally
Metamucil - 2 doses/day
VSL#3DS 2 x daily, Multivitamin, Calcium and D
homemade yogurt each day
doing well!
Son, 17, dx pancolitis 2007, in remission
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run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 3/15/2011 9:56 AM (GMT -7)
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.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 11:50 AM (GMT -7)
just lost my part-time job because of this uc flare. bummer.
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quincy
Elite Member
Joined : May 2003
Posts : 31941
Posted 3/15/2011 11:54 AM (GMT -7)
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
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17528
Posted 3/15/2011 2:36 PM (GMT -7)
How did the appointment go?
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien
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johnnymg
Regular Member
Joined : Mar 2011
Posts : 22
Posted 3/15/2011 3:14 PM (GMT -7)

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?
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 6:39 PM (GMT -7)
johnnymg,

"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?"

I have not eaten any solid foods for a couple of days, only liquids. Before that I was eating low residue diet for one week. Based on office stool sample doc thinks I am mainly just losing blood. I think I was bleeding more than any fecal matter. Last fecal matter looked like bloody dark red/brown coffee grounds with straight bright red dripping blood and dark green mucous surrounding dark red fibrous clots. Yuk! sorry for the gross visual. Tenesmus, a persistent feeling of having to defecate but unable to, is pretty constant.

Update for everyone.
Doc put me on a a pred regime of 40 mg for 2 weeks, 35 for two weeks, etc. Also tested for c diff and iron/magnesium deficiency. May have an infusion of iron and magnesium tomorrow and add antibiotics to the mix. He is treating me for free! Back on Imuran too although it gives me bad headaches. Vicodan is on its way for the pain.
Had my wrist slapped for trying to treat myself. I have never been poor before. It is hard to figure out what is the sensible thing to do when you feel filled with shame. I guess you just have to swallow your pride and ask up front for help. I have always been extremely independent so it is very, very difficult to ask for help.

Post Edited (Subzeromambo) : 3/15/2011 7:46:46 PM (GMT-6)

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quincy
Elite Member
Joined : May 2003
Posts : 31941
Posted 3/15/2011 7:41 PM (GMT -7)
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
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 8:43 PM (GMT -7)
quincy,
The dark green I have only had once before when I had an intestinal bacterial infection. I agree it is very strange.
I can't give out my job title without people easily finding out who I am. I appreciate your asking though. I have already been offered a couple of freelance contracts. I suspect I should start my own company as soon as I am strong enough.
I am on vicodan now and feeling no pain for the first time in many weeks. Heavens, it feels good.
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journey2health
Veteran Member
Joined : Oct 2009
Posts : 2857
Posted 3/15/2011 8:50 PM (GMT -7)
There's discussion of lemon juice on this thread. When I was flaring any citrus burned my gut. So be careful.
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quincy
Elite Member
Joined : May 2003
Posts : 31941
Posted 3/15/2011 9:31 PM (GMT -7)
Good to hear you have employment prospects!!

get well soon,
q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!
profile picture
beachlife
Regular Member
Joined : Missing Key Value : en-US, 577 2009
Posts : 473
Posted 3/15/2011 10:22 PM (GMT -7)
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!
Blogging my experience With UC.
http://lifewithcolitis.blogspot.com/

12-14-2010 - Following strict TCM diet and herbal teas. (Traditional Chinese Medicine)

2000 - Ulcerative Colitis - Proctitis
Asacol -> Colazal -> Lialda 4x/day
Daily: 500mg Vit D + 1000mg Ester C + 450mg Saw Palmetto(5x/daily)
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 11:36 PM (GMT -7)
beachlife,
Thank you for your kind post. I had a good time reading your blog!
SZm
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Subzeromambo
Veteran Member
Joined : Sep 2009
Posts : 1143
Posted 3/15/2011 11:41 PM (GMT -7)
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
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