new member,need advice please

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lynne95
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/29/2008 1:58 AM (GMT -6)   
           I have UC and Endometriosis, anyone else with both conditions? Endo diagnosed in 1995. Started having intestinal problems after endo surgery. Diagnosed with UC in 1999.Intestinal problems were chronic diarrhea,always feeling like I had to go but nothing came out, sometimes I had seconds to get to the bathroom, going 5-7 times everyday. GI said symptoms were not result of inflamation in colon, they were what caused inflamation. Does that make sense? GI gave me Asacol,it worked ok but still had some symptoms. Had to stop taking it cause it was to expensive(single mom,denied insurance because of UC. Well its 2008, I am 10 times worse. Chronic pain everyday and intestinal issues. I have read all about Endo and UC they seem to have similar intestinal issues and they both cause chronic pain. I dont know anymore which one has gotten worse.My daily routine if I want to leave the house is take Imodium advanced a few times a day and dont eat till I get home. I scope out the stores for bathrooms as soon as I walk through the doors, and look for stores as I drive down the road. sad     I know none of you are docs but, I need advice. I've been taking propolis extract and Aloe vera juice(lily of the desert) for almost a week now, have'nt seen much difference yet. Does this stuff work for UC?  I have to go herbal because of no insurance, maybe someone knows of a better choice?  I have read Accupuncture is effective,anyone know about this?     I have never told anyone all that before, that was really hard. Sorry it was long.                                                                 

love in a mist
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/29/2008 5:12 AM (GMT -6)   
Hello,

Sorry to hear what you're going through. I am by no means an expert at all, but on the holistic side of things, the aloe and propolis will take a while to work, consider you've had these problems for years now and it's a chronic condition, I would think you should notice some difference after a couple of months...do stick with it !! Also try peppermint tea and chamomile tea, both are good for using as anti inflammatories...make these a regular in your diet. As for acupuncture, I have actually started having that, only 3 sessions so far (though for other reasons I have not any for the last 2 weeks), however, I did notice a shift in bm's, very slight, but a definite change. I'm going back today to continue for a good few weeks. Although costly over time, I do believe it is worth giving it a go.

I must say that i am not yet diagnosed with UC, but there are signs that this is what I have.

Good luck xx

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 2/29/2008 7:11 AM (GMT -6)   

I have tried the acupuncture, and it is very expensive.  I have only gone twice, but the only difference I see is that now I wake up very early in the morning to go.  I'm not too happy about that.  Have you asked your doc about getting some samples of asacal or colazal.  My gi just gave me a card for 100 bucks off a month of colazal.  I don't know what other promotions or coupons there are, but it is worth a call into your dr office. 

We all understand scoping out bathrooms and making sure there are places to stop along your way to any destination.  We all live like that here, and we understand.  There really is not anything you can do about that.  I take a change of clothes with me in the car (just in case).  I have never needed it (knock on wood) but it does give my brain a rest.  I also tell myself that if I have an accident the worst thing that will happen is that I will be late, and I can live with that. 

Good luck, and I hope this helps.


diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 2/29/2008 8:50 AM (GMT -6)   

Lynne,

Some states offer medical insurance if you have been declined by an insurance company (I'm assuming you're in the USA).  Check out www.ccfa.org or call the CCFA - they have a link on the site to state insurance schemes. 

Also, you mentioned having to stop taking Asacol because it was too expensive.  Here's a link to the Procter & Gamble patient assistance program. http://www.pgpharma.com/patient_assistance.shtml - if you meet their requirements, you can qualify for a free 90 day supply of Asacol and upto 3 refills.

All the best.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


love in a mist
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 2/29/2008 9:09 AM (GMT -6)   
hello again,

from what i understand with acupuncture (and with other holistic treatments), is that an initial course of 10 weeks is advised, once a week because the effects are cumulative over time. Lemonhead - after my first two sessions I was actually quite the opposite to you and nearly comatosed with tiredness. My acupuncturist advised me that if that's what my reaction was, then my body obviously needed more rest; however on the third session, he changed positions of some of the points specifically to give me more energy, and it did work; so I wonder if the treatments you received, those points to give you more energy were used?! I decided to try acupuncture after having seen a naturopath for a number of months who is quite convinced that it was worth a try. Perhaps if you can find a local naturopath for even just one visit, they will be able to recommend supplements that may be of help.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/29/2008 10:12 AM (GMT -6)   
Hi Lynne,

I was without medical insurance when I was first dx'd and racked up some bills, I remember breaking down and crying and the GI telling me he would charge me for a different test that would not cost me as much.

It took me a year to pay off the bills but I did and I am so glad I went to the Dr's. I would take Rio's advice and also call around to some healthcare clinics and find one that is willing to work with you to set up a payment plan and if you get put on sulfasalazine I think that is pretty economical.

Hope you are better soon!
Beth


Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 2/29/2008 8:23 PM (GMT -6)   
Sorry to read that you have an insurance problem that's keeping you from sound medical treatment. I think that Rio & Beth are pointing you in the right direction. There was another person writing to this site last spring, as I recall, who had endometriosis + UC, but I don't remember what name she used. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

lynne95
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 2/29/2008 8:31 PM (GMT -6)   
        Thanks to everyone for advice, I will try acupuncture.  Rio-Thank you so much for web sites, I will check them out. yeah
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