Feeling frustrated!

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Mduck
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/7/2007 9:47 AM (GMT -7)   
I am looking for a way to vent my frustration to others who may understand. I have been dealing with UC for 9 years now. Most recently, I have had active disease with little remission time for about 2 years. I am a teacher and it makes life miserable. I am currently on a round of prednisone which was helping me to feel really good for the first time in a long time. I have now tapered to 10 mg. and was feeling almost normal the past few weeks. Eating well, not worrying all the time, doing things I want to do. Then this morning, I had that old feeling in my gut that sent me running to the bathroom. One of my students was in the bathroom and I had to knock and tell him to come out quickly so I could rush in. Not only did my entire class hear me going to the bathroom but there was a lot of bleeding this time. The prednisone had stopped the bleeding for the past few weeks and now I'm on a lower dose and the bleeding is starting again. I am just so frustrated and tired. Any input or words of encouragement would be so appreciated!!!

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/7/2007 10:56 AM (GMT -7)   
I am so sorry, that sounds very embarrasing and kids can be very mean. If they give you a hard time, don't put up with it, put an immediate end to it. It will get better.

I think a lot of people have problems while tapering, I would talk to your GI to find out what you can do, look into different meds.

hope you get better soon!
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 150mg 1xday nightly;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 11/7/2007 10:56 AM (GMT -7)   
Hi...I've not been on prednisone, but from what I've read...the tapering can cause a set-back of symptoms until the adrenal glands kick in to start conpensating for the decreased dosage of pred.

I would suggest you call the doc and ask for a rectal med such as Rowasa or a steroid liquid or foam enema to help with the urgency in the rectum to help lessen the likelihood of rebound symptoms.

How long were you on the 10mg?

Have you never been on any 5ASA meds in the past...such as ASacol or any of the rectal meds before being on pred?

Welcome to the forum if I've not passed that on before.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Mduck
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/7/2007 11:50 AM (GMT -7)   
Thanks for the responses. I am currently taking Colozal, Humira shots (every other week), Imuran, prednisone, and Entocort. I just tapered down to the 10 mg of prednisone. I started the course at 40mg and then have been tapering every 5 days by 5 mg. Over the course of my disease, I have tried so many medicines and treatments and other remedies. It's so upsetting because many doctor's I have seen say that I am basically failing medicinal treatment and should consider surgery. I am only 29 and I don't have kids yet. I want to get pregnant so badly but my husband is scared to try and the doctors I have seen say that I should be in remission for a few months first. With the surgery, I hear it can cause problems with fertility. I'm already dealing with enough with this disease. I don't want to cause more problems in my life with having the surgery.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/7/2007 12:41 PM (GMT -7)   
Since you're already on so many other meds, the easiest thing to do to get relief is call your doc and tell him you're having problems again. He'll probably increase the pred again until things smooth out, then you could try a slower tapering schedule. That last little bit of the taper can be problematic for alot of people.

Have you looked into other things you can do to support healing besides meds? Natural supplements and dietary modifications can help you in your efforts to reduce medication.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Mduck
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 11/7/2007 12:49 PM (GMT -7)   
I have tried some alternative healing methods. I was taking a whole bunch of recommended herbal supplements including fish oils but I take so many pills each day...it just felt like I had no need to eat food! So, I stopped those. They weren't helping anyway. I also tried acupuncture but didn't see any help from that. I'm currently under the care of a chiropractor who I see twice a week, once for massage and once for adjustment. That helps. It was interesting to find out that the most sore areas of my back are the two vertebrae that are linked to nerves leading to the stomach.
I have been seeking a dietary answer but no one has ever given me a real answer on things to eat that will help. I am open to any food advice that people have to offer.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/7/2007 4:11 PM (GMT -7)   
Natural supplements generally take longer to work their magic than prescription meds. You also have to make sure you're taking a strong enough dose. Omega-3 supplements have a good track record for reducing inflammation, but you need to be taking more than the average joe. You can learn more about it and appropriate doses in The New Eating Right for a Bad Gut. Other helpful dietary recommendations can be found in Breaking the Vicious Cycle and Listen to Your Gut.

The New Eating Right for a Bad Gut
http://www.amazon.com/New-Eating-Right-Bad-Gut/dp/0452279763/ref=pd_bbs_sr_1/105-1230798-0579644?ie=UTF8&s=books&qid=1194477025&sr=8-1

Breaking the Vicious Cycle
http://www.amazon.com/New-Eating-Right-Bad-Gut/dp/0452279763/ref=pd_bbs_sr_1/105-1230798-0579644?ie=UTF8&s=books&qid=1194477025&sr=8-1

Listen to Your Gut
http://www.crohnsalternative.com/


Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


UC Fighter
Regular Member


Date Joined Oct 2007
Total Posts : 89
   Posted 11/7/2007 4:18 PM (GMT -7)   
Makes me nervous as I just dropped from 40mg to 30mg today and "waiting" to see how things go...
Current Prescriptions:
 
40 mg 30 mg Prednisone per day, 1 x per day
1000 mg Sulfasalazine, 4x per day
1 Mesalamine Enema per day


Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 11/7/2007 4:39 PM (GMT -7)   
Once you get down to about 10mg and lower, it's gets tough. Your doctor will probably bump you up to 15mg for a little bit longer and then start a slower taper. I've been on/off Prednisone for 20 years, and each year, the tapering gets harder and harder. Good luck.

Deb McG
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium

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