Should I up treatment to the next level?

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UCisNOFUN
Regular Member


Date Joined Sep 2007
Total Posts : 34
   Posted 10/5/2007 11:55 PM (GMT -7)   
I don't think Lialda/Asacol is working for me. I've had my 2nd flare up since being dx'd 10 mos ago. Should I try altering my diet first? I do eat a lot of sugar and "bad" foods. What do you all think?
 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.
I am currently taking 4 Lialda pills a day and 30 mg of Prednisone temporarily.
Also I take:Propecia(hair loss), Trentenoin(acne), Paxil(depression), Allegra(allergies), Advair&albuterol(asthma), multi-vitamins, b-complex, flax oil.
I eat a vegan diet.


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 10/6/2007 1:05 AM (GMT -7)   
Have you given rectal meds a try? Many of us still flare while using Asacol but use the Salofalk or Rowasa enemas to treat flares at the first sign of anything being wrong. I now do that rather than use prednisone to treat flares. I still flare a few times a year but I get right onto with the enemas and fix it up. If this method stops working for me or I can't handle it anymore then I'll go onto Imuran. However, for now, I'm pretty pleased with how well the enemas work - certainly better than having to take pred!
UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins


UCisNOFUN
Regular Member


Date Joined Sep 2007
Total Posts : 34
   Posted 10/6/2007 1:14 AM (GMT -7)   
I will look into enemas when I see my doctor. Yhe trouble is that even though I get constipated during a flare, I still rush to the toilet several times a day. Won't I excrete any suppositories? I used canasa before and it was very tricky keeping it in. But I need to do something because prednisone makes me a moody, weight gaining, moon faced mess! And, believe it or not, my biggest concern is hair loss. I am 30 and single and need every strand so I don't stay that way. Lol. I've lost so much since U.C. entered my life. Does anyone go of all meds.,watch everything they eat and use natural remedies like flax oil and stay in remision? Is that possible?
 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.
I am currently taking 4 Lialda pills a day and 30 mg of Prednisone temporarily.
Also I take:Propecia(hair loss), Trentenoin(acne), Paxil(depression), Allegra(allergies), Advair&albuterol(asthma), multi-vitamins, b-complex, flax oil.
I eat a vegan diet.


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 10/6/2007 3:23 AM (GMT -7)   
You put the enemas in at night so hopefully they stay in overnight while you sleep. This is so that you don't excrete them with a bm until the morning and also so that you put them in laying down and remain laying down so that the liquid spreads as far up the colon as possible. I don't know much about the suppositories - I take the liquid salofalk enema. This is the same 5ASA drug as your Lialda tablets, but in enema form so it gets right to where it is needed. Some people find them a bit tricky to keep in at first but you'll quickly get the skills plus, as they get to work and reduce your inflammation, they'll also be easier to retain. I can now cope with a flare using these, whereas I used to have to take steroids. I just love the rectal meds!

Be careful about going off all meds - many people have done that and regretted it (do some searching through the forum and you'll find quite a few stories). Plus, the Lialda tablets you are on are also given to UCers to help protect against colon cancer, which we are at an increased chance of developing after years of having UC.

Some people have had luck with dietary changes and some people have tried every diet and supplement around without any luck. It seems to be an individual thing. I'd recommend that you talk to your Dr about Rowasa enemas and give them a serious try. Keep up the Lialda and perhaps try some ideas like a different diet or flax oil (etc.) one a time and see if any of them work for you.
UC since 2001, diagnosed May 2005
Salofalk tablets (Asacol) 4 x 2 tablets daily for maintenance, Salofalk enemas for flares
Oat bran 60grams daily, Metamuscil and multivitamins


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 10/6/2007 6:41 AM (GMT -7)   
i went off all meds and now regrett it. I had 5 yrs of remission but when i flared again it was so much worse. My Gi told me if i had been on my meds mu UC wouldn't have spread and gotten so severe. It went from mild/moderate left side colitis to severe pancolitis. I have been flaring for a year and haven't gotten it in coltrol yet. Please think about what going off of meds can do. Even when you feel fine you don't know what is happenening in your colon.

Aside from that I second the rectal meds. have you talked to your doc about the hair loss? Personally i think bald is sexy but i understand the concern. I also agree that anything you try do one thing at a time so you can really see what is changing the way you feel. Good luck!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 15 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/6/2007 8:14 AM (GMT -7)   
Call your doctor rather than waiting to see him. Request him to call in a script to the pharmacy for a 5ASA retention enema such as Rowasa (I'm assuming you're in the US)...Salofalk if you're not.

Best to do it sooner than later...really. We're not suggesting it because they don't work...we're suggesting it because they do.

quincy


*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd 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 !!!

Post Edited (quincy) : 10/7/2007 2:13:50 AM (GMT-6)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 10/6/2007 8:16 AM (GMT -7)   
You might also try switching to the older drug, azulfadine (Sulfasalazine) in place of Asacol/Lialda. I don't know about Lialda, but some folks have alot of trouble with Asacol actually making symptoms worse.

I would highly recommend you look at making dietary changes, too. That can make a big difference in reduction of symptoms and can help you reduce or eliminate the need for meds.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


UCisNOFUN
Regular Member


Date Joined Sep 2007
Total Posts : 34
   Posted 10/7/2007 4:23 AM (GMT -7)   
Thank you all for your feedback. I appreciate it :)
I have a colonoscopy tomorrow and I am going to discuss Rowasa. I really need to get off sugar but food has been a coping mechanism my whole life and I eat a lot when Im lonely or depressed which is pretty constant lately. Especially with the prednisone, man have I been hungry. I went from 330lbs to 180lbs a couple years ago. Now I am at 220 and Im having a lot of anxiety because Im not nipping this weight gain in the bud. Im scared. I know this isnt the forum for this, but I need to vent. If I kick the sugar I think Ill be better off(with my UC too) Im just having such a bad year...the UC diagnosis, legal issues, a pay cut, unhappiness and depression and most of all lonliness. And this UC keeping me prisoner in my own home isnt helping. Well, thanks for listening :)
Have a great weekend everyone!
 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.
I am currently taking 4 Lialda pills a day and 30 mg of Prednisone temporarily.
Also I take:Propecia(hair loss), Trentenoin(acne), Paxil(depression), Allegra(allergies), Advair&albuterol(asthma), multi-vitamins, b-complex, flax oil.
I eat a vegan diet.


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 10/7/2007 6:19 AM (GMT -7)   
Could the vegan diet be making things worse? Just a thought. Also the sugar and artificial sweeteners some have a real problem with.

My husband will be starting the cortifoam enemas that so many have recommended here. He used the colocourt previously which did help but the foam ones and the medicine in it was more recommended by his Mayo Clinic Dr he just saw.

The turning point for him was going on the imuran. He was started on a very low dose of 75 mg and has just started 150 mg. It is a heavy duty drug and must be monitored with monthly blood tests. So far he has tolerated the 75 mg extremely well so the 150 should be ok the dr thinks.

Good luck.

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran 15 mg prednisone & tapering, 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enemas AM & PM, folic acid 1mg, Fosamax 1x month


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 10/7/2007 7:23 AM (GMT -7)   
This is a difficult illness. Being single (I can relate) sometimes makes this more difficult. On the other hand, being with an unsympathetic partner can be even more difficult, I would imagine. Anyway, it's tough, tough, tough no matter what.

I echo what others have said about rectal meds. Imagine the length the drugs have to go to to get to the most (probably) inflamed portion of your body. From your mouth to your rectum must be about a mile (just kidding, but it is a long distance). Instead of hoping and praying that the meds make it there, why not address the problem from the other end and see if direct application of meds works for you like it has worked so well for so many others. I urge you to follow the advice you've been given and get a script for Rowasa or even the steroid enemas. They really will heal and town down the inflammation.

As to your depression or anxiety about the hair loss and your weight, that's completely understandable. You may discover there is quite a high number of participants here with depression issues. I am one of them. One of the most successful antidotes to depression is physical activity and exercise. If you can find the energy and the time (make the time!) and can be away from a bathroom for any length of time, try to incorporate some physical activity into your life. It really can have amazing effects. If you feel too overwhelmed to handle that, perhaps speak to your doctor about your feelings and have an assessment as to whether further treatment for your depression might be warranted.

Anyway, good luck. You are not alone. Living with this illness is difficult, but as is testament here, it is not impossible. We're here to listen, commiserate and at least try to help.

Mitz
Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.

Post Edited (MitzMN) : 10/7/2007 10:46:01 AM (GMT-6)


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/7/2007 8:53 AM (GMT -7)   
Don't worry so much about the hair loss! This is a different kind and it will grow back :) My first major experience with pred induced hair loss was SCARY! For a week my hair just feel out in clumps everytime I touched it. I couldn't take a shower without clearing off the drain once or twice. A few months later the hairs were back - short and sticking out all over the place!

My second hair loss event, I started Biotin - as many recommened on the forum. It made my hair grow back faster! I took 5mg per day - way about the RDA. Biotin is a B vitamin and is water soluble - so your body will just excrete the excess.

Good luck with your scope prep! Let us know what the doc says - and ask about those rectal meds!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


UCisNOFUN
Regular Member


Date Joined Sep 2007
Total Posts : 34
   Posted 10/7/2007 1:57 PM (GMT -7)   
Thank you all for your feedback. It does make more sense to address the problem head on, or rear on in this case. Im going to look into Rowasa.
I am taking biotiin and exercising regularly, although I am not exercising at full capacity. I used to do weights, I havent for awhile.
Anyway, you guys are great and this forum is extremely helpful :)
 I was diagnosed with U.C. in early 2007. I am 30, single and no kids.
I am currently taking 4 Lialda pills a day and 30 mg of Prednisone temporarily.
Also I take:Propecia(hair loss), Trentenoin(acne), Paxil(depression), Allegra(allergies), Advair&albuterol(asthma), multi-vitamins, b-complex, flax oil.
I eat a vegan diet.

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