Mom's tried everything

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poobs
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Date Joined Jul 2008
Total Posts : 15
   Posted 7/1/2008 7:08 PM (GMT -6)   
 
 
My mother is 80 and was diagnosed with U/C over a year ago. Her regular MD soon gave up on her after trying several meds and sent her to a specialist. - Steroids, test to determine if her colon has adequate blood supply and a myriad of other things have been tried to no avail.  Sorry I don't know the name of all the meds but she has gone down hill steadily since the oncet. The specialist says she has nothing else to try.....  
She has had two hospital (ER) visits in the last month because of dehydration due to not wanting to eat or drink. She now looks like a skeleton.
When this all started she was told that the Humira that she was on would help. Among many things she was also told that her U/C was actually a bacterial infection and given antibiotics. This seemed to help for a while.
Most recently, her Dr. has actually stopped all meds and given her something to stop the diarrhea but now she still has a lot of stomach acid.
She is desperate and has asked me to look into holistic medicine and even acupuncture. 
 
Any advice will be greatly appreciated  confused

Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/1/2008 7:51 PM (GMT -6)   
I just started a new diet yesterday that already seems to be working. I found this book called, "The Self-Help Way to Treat Colitis and Other IBS Conditions" by De Lamar Gibbons, M.D. If I continue to have success, I plan on writing a full description of the book under a new topic for everyone to read. I strongly suggest you get this book. The author had a 90% success rate in a study on people with IBS and all the IBD diseases. The logic of it makes a lot of sense - in a nutshell, your mother will need to exclude fructose (and its nasty relatives) and wheat bran fiber. Its a short book and an easy read. You can even skip right to the diet pages, but it helps to read the rest.

Good luck - I hope your mother feels better soon.
Katie
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily, Fish Oil 2x daily, Disgestive Advantage (Colitis) 2X daily, Metamucil 2X daily, Yoga daily.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/1/2008 8:31 PM (GMT -6)   
Thank you for replying. Please do post your findings for us.
I will look into the book also.
I will also be getting a list of meds from my mom. This will include all that she has taken.
Maybe someone can comment on them.

Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/1/2008 9:57 PM (GMT -6)   
Hi,
 
So sorry to hear about your Mom, this is such a difficult diagnosis at her age. When I had UC, I tried all sorts of alternative medicine, I discuss all my attempts in the following post. But the post also links to an article by the Mayo Clinic, and a Video on IBD and alterative treatment.
 

Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 7/2/2008 8:52 AM (GMT -6)   
my daughters dr had her on rifaxamin for pain of gas it's an antibiotic that works in the colon and doesn't get absorbed into the sysytem at the rate of other antibitoics she believes it was what stopped her symptoms , i think it was interesting how fast she felt better when she began this med.
Mom to 19 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 1 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/2/2008 9:37 AM (GMT -6)   
I'd recommend you/she read Listen to Your Gut by Jini Patel Thompson. It covers a variety of alternative and complementary treatment options for IBD, including dietary modifications and is a great place to start. If your Mom's colitis was triggered by a bacterial infection, Jini's Wild Oregano Oil protocol - antimicrobial, antifungal and antiviral - might be a big help.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 7/2/2008 10:24 AM (GMT -6)   
The book above suggests that you take out all sugar, fructose, sucose, high fructose corn syrup (which is in everything) and also take out maltose and sorbitol.  The idea behind this is that without the sugars, it will starve your colon of all the bad bacteria and yeasts.  It did not work for me, but since you moms is a bacterial infection, it may work.......also try some ngood probiotics, you can get a lot of suggestions on this forum....it will also help replenish her colon with "good" bacteria.  Best of luck and I hope she feels better

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/7/2008 5:00 PM (GMT -6)   
Thank you all for your kind replies.

I am having a real hard time finding the time to list mom's meds.

I'm pretty sure that anything that is given rectally she refuses to take so chances are there are options that she has notgiven a chance to.

Another thing that we are dealing with is her tendency to give herself bland foods that often have starches such as mashed potatoes.

forgot to mention that she is diabetic

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/7/2008 6:00 PM (GMT -6)   
Poobs - Welcome to HealingWell! Sorry you had to find us, but glad that you did.

Diabetes and UC can be an "interesting" combo as sugar alternatives (aspertame, etc) can be really hard on the colon. Another of our members, who has not posted recently due to medical complications, also has diabetes and UC and recommended Stevia as a sweetener as it does not raise blood sugar.

Bland foods are good for a flaring gut, however, a balanced diet is still needed. It might be best to consult with a nutritionist/dietician to find some good foods for your mom. Veges are okay as long as they are cooked "into oblivion" and are fork tender - if you can smash them with a fork without resistance, you're good to go. Lean protien - chicken breast, turkey breast - are very good as well. The body need protien to heal.

Rectal meds are a hard thing to wrap your mind around. However, they do work wonders as they are applied to the source of the inflammation. It took me a few good days to work up to the mental aspect of it - and a good "talking to" from Quincy about their importance. I would suggest starting with the suppositories as they are easier to administer and working up to the enemas.

Good luck!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
15mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion on 06/17/08:  Next infusion on 07/01/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


NuffinButtTrouble
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Date Joined Mar 2007
Total Posts : 679
   Posted 7/7/2008 7:33 PM (GMT -6)   
Cut out all sugar...it "may" help.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/7/2008 7:56 PM (GMT -6)   
Like I mentionend ealier, the Dr has taken her off all meds and put her on Lotromex.

Yesterday she started complaining of headache, stiff neck and swollen neck making it hard to swallow.

We called the Dr and he did not say if the Lotromex could cause the above.

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/7/2008 9:15 PM (GMT -6)   
You can check for med side effects and interactions at www.rxlist.com. Your pharmacist is also a good source of information on med side effects.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
10mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion on 06/17/08:  Next (3rd) infusion on 08/12/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/10/2008 5:07 AM (GMT -6)   
 

Thank you all again for your help and advice.

 

To answer some of the questions posted :  She lives in Palm Harbor Florida near Clearwater.

 

The stiff neck, difficulty swallowing has subsided probably as a result of stopping the Lotromex.

 

I'm having a real hard time getting her to stay away from starches too although she does understand that sugars are NG.

 

She is also trying Imodium to see if she can function with just this over the counter drug.

 

On a brighter note, I printed all the above replies for her and she read them and is very interested in helping herself.

  
 
 

GKLOR
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 7/17/2008 2:43 PM (GMT -6)   
Over a year ago, I wrote on this site about a drug called Rifaxamin which has been a miracle drug for me.  It has allowed me to get back to a normal life sans prednisone.  It a poorly absorbed  (non-systemic) antimicrobial antibiotic.  I have indeterminate colitis, meaning they are not sure if it is UC or Crohns (although, my guess is UC, based on pathology, behavior of the disease etc.) I use the drug off label @800 mgs per day, split into two doses.  If you  google search, you will find articles that support the use of this drug.  It might be worth a try.   I also take Pentasa, but that alone did NOTHING.  haveI had the disease for about 10 years, with the disease progressing from left side colitis, which was fairly easily controlled to pancolitis, which was uncontrollable about 2.5 years ago. Rifaxamin has made all of the difference in my quality of life.  Good luck!

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/17/2008 3:18 PM (GMT -6)   
Thank you. I will forward the information.

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/19/2008 4:15 PM (GMT -6)   
Well, she is waiting for yet another appointment with her specialist.

I have lost my faith in this Dr since besides putting her on the Lotromex he is very arrogant. We will still bring up Rifaxamin to see what he has to say.

I think if was fortunate that she took herself off the Lotromex because of the deadly side effects.

As of this wrting she can't get food to go down because she says it refuses to go down becuase of a sensation as if she has a knot in her throat ( ? ) The other side of that is constant gasess that keep her up at night.

My sister, wife and myself are contemplating our options such as finding another specilist or even switching health plans....

chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 7/19/2008 5:39 PM (GMT -6)   
You said that antibiotics helped her.....has she ever been tested for c-diff?   Flagyl is a good antibiotic that has helped me alot. 

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/19/2008 6:33 PM (GMT -6)   
What is C-diff?

GKLOR
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 7/20/2008 4:54 PM (GMT -6)   
I would definitely seek a second opinion and soon. A different doc can make all of the difference in the world. You might want to go to CCFA website to look for docs that specialize in IBD in your state. Also, ask for copies of all test results and keep them together in a file or notebook and take them with you to all doc appts. I have all pathology since day one that I keep in a three ring binder in chronological order and it is helpful when seeking a new opinion or seeing a new doc, even if it is for another condition. I would also google IBD and rifaxamin studies, IBD and antibiotics etc., and go in there armed with scientific evidence. One doc doing Rifax studies is Dr. Baidoo at Univ of Pitt. Good luck. Keep us posted.

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/20/2008 7:03 PM (GMT -6)   
I asked my mom about the Rifaxamin and the other med and she says it is not one of the meds that has been prescribed to her...
Since her specialist appointment is in August the plan is to get her to her regular plan Dr before then as a last ditch effort to get her some improvement. We will of course bring up anything recommended here in this forum. This Doctor however seems to be combative or maybe is a function of the medical plan that she is on. It was really hard to get her primary physician to let her see a specialist. This is another reason why we are shopping around for better health care plan.

BTW, The idea about gathering all her test results is awesome

Thank you all once again for all your advice

GKLOR
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 7/20/2008 7:08 PM (GMT -6)   
One more thing, Cipro might get you through til Aug and is indicated in some cases for IBD. Good luck! I know how unpleasant and life altering this disease can be. Chime back in after the Aug appt!

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 10/2/2008 11:19 AM (GMT -6)   

I know it has been a while since I updated this but suffice to say that my mother is the same or possibly worse.

 

She has given up on her specialist and it seems he has given up on her. she pretty much gets the same rhetoric that she has to be patient etc. but the symptoms do not go away.

 

Recently she went to an "all natural" doctor. This is out of plan and very expensive.

We had hi hopes initially since the new doctor found something wrong with her liver and prescribed some meds. The Dr explained One of them was one I recognized - Echinacea.

 

All the meds worsened her condition so the doctor reduced the quantity the frequency and eventually took her off them altogether.

 

She is yet on another two meds that also seem to cause her irritation, pain diarrhea and gas.

 

I will try to post the names of the others. 

 

Someone at work reccomended that she eat garlic - Is that worth looking into ?

Is it raw garlic or pills or ?


GKLOR
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 10/2/2008 12:00 PM (GMT -6)   
I don't know about the garlic, it might agitate the intestines.....  I would be careful with that. Two non-Rx remedies that do seem to help me is taking a probiotic  - I get it at Whole Foods and drinking a lot of the probiotic yogurt.  I drink 2-3 of those per day. If it is any consolation, this disease is really difficult to control.  She might also want to stick to a low fiber diet.  Kind of boring, but it helps.  Finally, I can't remember, but did they at least give her a month or two of prednisone to at least try to stop the inflammatory process.  Sometimes a 45-60 day round helps and at least you get some temporary relief.  I wish you and your mom all the best.

Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/2/2008 12:00 PM (GMT -6)   
awww poobs I am so sorry. Did you try a new GI specialist? My first GI wrongly diagnosed me for 14 months, and now I am with a new one.

poobs
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 10/2/2008 2:03 PM (GMT -6)   
Yes, I want her to go to another specialist but with her health plan she has to go thru her primary dr and he is useless.
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