NEWBIE TO FORUM - OLDIE TO COLITIS

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

JERRI
Posts: 20
Joined: Wed Apr 29, 2009 12:06 pm
Location: Redlands, California

NEWBIE TO FORUM - OLDIE TO COLITIS

Post by JERRI »

I have enjoyed so much reading all of the messages and especially love “Tex’s” input. He is very knowledgeable and empathetic.javascript:emoticon(':grin:')

John Hopkins web site pretty much says it all: “Although therapeutic approaches have demonstrated symptomatic improvement, there have been few patients with total historological reversal.” javascript:emoticon(':mallet:')

For the last 25 years I have been afflicted with a “colitis” condition. On June 10, 1987, a colonoscopy was performed and my condition was diagnosed as “ulcerative colitis” and I had several benign polyps removed. I was placed on sulfasalazine, and was symptom free until 1990, at which time I had minor surgery and had to go off the drug (and also quit smoking that year). Without the sulfasalazine I still remained in remission until 2007.

In the fall of 2006 my husband and I traveled to Paris and England. Three months later, I was house bound, wearing depends, and worse day scenario - D occurred 15 x a day. A colonoscopy diagnosed me to have “Microscopic/Lymphocytic colitis”. This bout has truly been my worse, I have absolutely no warning, as I had with my previous colitis condition. My most humiliating experience was where I lost control in a restaurant - yes, a restaurant!javascript:emoticon(':oops:')

During the past 23 years, I have had 8 colonoscopies, a signoidoscopy, cat scans, MRI, and a liver bioposy and, I have taken: Sulfasalazine, prednisone, entocort, cholestyramine, asacol, colosal, imodium, asacol, and various antibiotics. I have been under the care of 5 different GI’s and even went to a disease specialist, in that I thought perhaps I might have contacted a bacterial infection while in Europe.

I have found “Entocort” to work the very best for me. Since 2007, I have been on three separate regiments: On for 17 months, and weaned off for three months. My bone density has been compromised, so I must remain off it for now.

Which brings me to the present: I actually feel very blessed due to the fact that both cancer and Crohn’s disease had been suspected, and ruled out. I have the “D” pretty much under control by, of all things, using Pepto Bismal - over 300 mg. Daily, and a dose of Lomotil before I go out in public. Since my last colonoscopy, April 10, 2009, I now have rumblings in my stomach before the “D” strikes, which thank God gives me some warnings. I guess there is more to be said for a colonoscopy than just diagnosis? (ha ha). Also, I have found that eating several small meals throughout the day, and very important, exercising daily really helps me to feel better. When Tex says “keep a food journal” he is absolutely right, and you might also consider keeping a medication journal as well, I have found it to be very helpful as well.

Somewhere, I don’t remember whose message, I think it was Tex, said that autoimmune diseases as well as thyroid diseases are very often associated with colitis. i would find it very interesting to see how true this is of any of you. I have arthritis, hypoglycemia, and hypothyroidism.




:grin: :arrow:
Rose
Adélie Penguin
Adélie Penguin
Posts: 238
Joined: Tue Jan 27, 2009 5:09 pm

Post by Rose »

Jerri,

WELCOME to the family. We are happy to have you here (although I sure wish it was b/c of other reasons). I too have the urge to splurge over 20 times a day without warning. Most of the time I get the stomach gurgling (in our house we call it the "big flush") and I know (and my kids too) that I have to find a bathroom really quick.

I also have several autoimmune problems. I have psoriatic arthritis, reynaurds phenom. and psoriasis. I have been on asacol, entocort, welchol and lomotil. The only thing that helped was the entocort, but I had to stop taking it b/c of the side effects.

Rose
JERRI
Posts: 20
Joined: Wed Apr 29, 2009 12:06 pm
Location: Redlands, California

Post by JERRI »

Dear Rose,

Thank you for the welcome javascript:emoticon(':grin:'). I'm curious, how long have you been afflicted with the "D"?javascript:emoticon(':flush:')

Sincerely, Jerri.
User avatar
jodibelle352
Angel
Angel
Posts: 610
Joined: Sat Jun 21, 2008 10:57 pm
Location: Michigan
Contact:

Post by jodibelle352 »

:welcome: Jerri!

After reading your post I had to smile because you are soooooooo in the right place. Nothing you could say or anything you've experienced all of us here truly understand and will help in any way we can.

Tex is very knowledgeable and should be recognized for all the information he's able to absorb and pass on to us so that we can understand.

All of us on these boards have had many uncomfortable situations that have led us to also confining ourselves to our homes because of the fears of being embarrassed unexpectedly if we go to far from home and our comfort zones.

Through this site you are about to find an "extended family" who not only share your medical issues but we also share hobbies, photo's and family issues. IMO, you are about to go on the best adventure you've ever been on with family who will prop you up when you're feeling dispare. When you've tried a new med and it may or may not work for you someone will be here to help through adjusting to another med or help you through by using a GF diet.

Take Care Because We All Care!!!!!!!!!!
Love and God Bless:
Jodi :angelpraying:
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
starfire
Moderator
Moderator
Posts: 5198
Joined: Wed May 25, 2005 5:48 am
Location: Pennsylvania

Post by starfire »

:welcome: Jerri
Boy, you have certainly been "round the bend" with this stuff already. I agree it can be a most humiliating disease. I had a small accident in a restaurant once myself.

I'm sorry but I was wondering if you know that you can get a buildup of bismuth from taking Pepto Bismol for too long. Can't remember now the recommended dosage but it's been mentioned many times on this board. Perhaps you already know about it. Just wanted to make sure.

I hope you can find some further help here. I'm so sorry you can't take the Entocort anymore. It is indeed a gread med for those who can tolerate it.

Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
User avatar
barbaranoela
Emperor Penguin
Emperor Penguin
Posts: 5394
Joined: Wed May 25, 2005 6:11 pm
Location: New York

Post by barbaranoela »

Greetings to U Jeri---and welcome

I know our family will give U the very best info to help U walk that *wellness road*
PEPTO was a killer for me---yes---due to the bismuth--and Entocort was another No-No-but my salvation was Colazal---and a change to a knowlegable GI---I dealth with MCC ---and my best friend, at certain times, was DEPENDS~~~

As I have said many a-time-here---I did not suffer with megga complications that so many here have--
I do suffer with psoriasis---which comes and goes~~~~~recently had blood work done to see if anything else was going on but thankfully *NOT* and about 2 years back was detected with *hyperthyroidism*--medicated and doing fine--matter of facet the *nodules* have shrunk!!!
So--know that there is *HOPE* and U can get a better life--

:tigerpoobearhug:
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Jerry,

Welcome to our internet family. You have a very interesting history. After you were able to control UC for so many years, it seems sort of like "cruel and unusual punishment", to now have to deal with a disease that seems to be more difficult to control, namely MC.

It's a shame that your doctor didn't prescribe adequate amounts of daily vitamin D3 while you were taking Entocort, because if he had, there's a good chance that you might not have suffered the bone loss that caused you to have to stop taking it. Of course, even just a few years ago, the benefits of higher doses of vitamin D3 were largely unknown, (and it still does not appear to be widely known). I wonder, though, what would happen, if you were to take Entocort now, along with a daily dose of about 4,000 to 6,000 IU of vitamin D3. I have a hunch that the D3 might prevent any further bone loss, and, in fact, you might even see some bone improvement. That's just a guess, though - I'm not aware that any research has been done on this combination, and I am not a medical professional, of course. Has your D3 level ever been tested? I'm guessing that it is low. It would be a test for 25[OH]D, or 25-hydroxyvitamin D. You might be interested in reading this:

http://www.womentowomen.com/healthynutr ... amind.aspx

You may not have to be concerned about the bismuth build up that Shirley mentioned, because the original treatment that Dr. Fine suggested, was for over 2,000 mg per day, for 8 weeks, before a toxic build up became a risk. At 300 mg per day, it would take around 400 days to reach this point, and at that rate, it's possible that your body may be able to eliminate it fast enough that it might never reache a toxic level. The condition of a toxic level of bismuth in the bloodstream is known as bismuth encephalopathy. The symptoms are anxiety, confusion, difficulty in speaking or slurred speech, severe and/or continuing headache, mental depression, muscle spasms, especially of face, neck, and back, muscle weakness, trembling, or uncontrolled body movements. IOW, they are similar to the neurological effects of many meds, (including Entocort, for example), exhibited by patients who are allergic to, or who develop an allergy to, a medication. If you notice any of those symptoms, of course, you would want to discontinue taking the med, and check with your doctor, ASAP. Hopefully, that will never happen.

Thank you for the kind words, and again, welcome aboard.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JERRI
Posts: 20
Joined: Wed Apr 29, 2009 12:06 pm
Location: Redlands, California

Post by JERRI »

Dear Jodi, Barbara & Shirley,

Thank you so much for the welcomes. I really appreciate all of them.javascript:emoticon(':bigbighug:')

Shirley, you mentioned to be careful of a "buildup when using Pepto Bismol". Please advise?javascript:emoticon(':conversation:')

My prior experience with Pepto Bismol prior to my last colonoscopy on April 10, 2009 was as follows:
For four days I took 4 pills 4x a day (per dr. instructions).
On my own, I dropped the dosage down to 4 pills 3 x a day for eight days.
Then for four days, I dropped the dosage down to 4 pills twice a day.
Finally, a dosage of 4 pills once a day for four days.
And then - no pills for 4 days prior to the colonoscopy.

i was doing so well, but of course after the colonoscopy - i was back to "0" control.

thank you - Jerrijavascript:emoticon(':smile:')
JERRI
Posts: 20
Joined: Wed Apr 29, 2009 12:06 pm
Location: Redlands, California

Post by JERRI »

Dear Tex,

Thank you for the info on Pepto Bismol. I really appreciate it.javascript:emoticon(':grin:')

I am a 67 year old small framed woman; and prior to 1990 a very heavy smoker .javascript:emoticon(':twisted:') I have therefor always had to watch my bone density. I have always taken supplements of Calcium and Vitiam "D". and I was taking "Actonel" before the second bout of "D" hit me. All doctors took me off all meds, one at a time to see if one of them was creating the problem, which they were not. I have commenced "Actonel" therapy once again; and I will resume the "Entocort" some time in the future. Having said that, I have printed out the info you forwarded me on Vitamin "D" just to make sure I am taking adequate amounts.

Thanks again - javascript:emoticon(':smile:')
Jerri
Pat
Rockhopper Penguin
Rockhopper Penguin
Posts: 1068
Joined: Fri Nov 17, 2006 2:41 pm
Location: Texas

Post by Pat »

Welcome Jerri,

I too have had some public accidents: the grocery store and a friend's home come to mind - I've tried to forget. Many, many times I have had accidents in the car or even just trying to get to the toilet in my own home! I am so much better since changing my diet, taking an antifungal drug, and Entocort. Entocort didn't work the other times I have taken it but it helps so much more this time with diet. I would strongly encourage you to get tested at Enterolab or just go gluten free. Sorry this is how we had to meet but you have found the right place for support.

Pat
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Jerri,

Dr. Kenneth Fine, the founder of Enterolab, is the GI doctor, and researcher, who developed the "Pepto treatment" for MC, over 11 years ago. Regarding your "relapse", after finishing the Pepto treatment that you described in your post to Shirley, above - have you ever read the article on microscopic colitis at the link I've listed below? Especially, note what Dr. Fine says in the last paragraph about relapses after the Pepto treatment. He says:
In fact further analysis has shown that patients who experience relapses after Pepto Bismol treatment or the rare patients who do not respond are all gluten sensitive.
http://www.finerhealth.com/Educational_ ... litis/FAQ/

That's why I fully agree with Pat's advice in her post.

You're most welcome, and I'm keeping my fingers crossed that this will allow you to get your life back.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
starfire
Moderator
Moderator
Posts: 5198
Joined: Wed May 25, 2005 5:48 am
Location: Pennsylvania

Post by starfire »

Sorry if I upset you about the bismuth..............I truly didn't remember the dosage involved with that problem. Tex keeps much better track of that stuff than I do, so I should have just kept my mouth shut.

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
User avatar
MaggieRedwings
King Penguin
King Penguin
Posts: 3865
Joined: Tue May 31, 2005 3:16 am
Location: SE Pennsylvania

Post by MaggieRedwings »

Morning and Welcome.

We have all been there in one way or another and stick around and we can help you and the board is a wealth of knowledge.

Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
JERRI
Posts: 20
Joined: Wed Apr 29, 2009 12:06 pm
Location: Redlands, California

Post by JERRI »

Dear Pat and Maggie,

Thank you for the welcome javascript:emoticon(':bigbighug:'). I have found everyone to be so warm and helpful.

[/b]Pat: Yes, you certainly have passed me up with the accidents, and I thought I had quite a few. You poor thing. You mentioned an antifungal drug that you were taking?

Dear Tex: As usual, you have provided me with a wealth of information, and as I am writing this message to you, my printer is smoking. Today, I will definitely be reading up on Dr. Fine and Enterlob.

Now, if I may pick all of your brains some more - This past week I have been (experimenting) eating "Organic Probiotic Soyogurt". Nasty tasting stuff. I found "Silk Live Soy Yogurt - 6 live & active cultures" to be much more tastier. I guess my question is: Isn't the consumption of the "probiotics" suppose to help?javascript:emoticon(':shrug:')

Sincerely,
Jerri

Pat
Rockhopper Penguin
Rockhopper Penguin
Posts: 1068
Joined: Fri Nov 17, 2006 2:41 pm
Location: Texas

Post by Pat »

Jerri,

After completely exhausting the traditional medical community I went to an MD who practices a little alternatively. She put me on an anti yeast diet - no grains, no sugar- and put me on Nystatin (2 weeks)and Diflucan (about 6 weeks) overlapping. I believe it helped. She did an IgG food allergy test and said I should avoid garlic and eggs. That all happened recently. Almost 2 years ago I had the Enterolab tests from Dr. Fine and he said to avoid gluten, dairy, and soy. Just eliminating those 3 did not work for me. I actually could tell no difference except no reflux. I had already eliminated the dairy prior to testing because it caused the reflux. I also have been dx with fructose intolerance about 2 years ago. Eliminating fructose got rid of the gas, bloating, and 80% of the muscle aches but not the D. I am back on Entocort because the diet just hasn't done the trick yet and I wanted to be able to add back some vegetables for better nutrition. I am not normal yet but better. I used to be able to take imodium or Lomotil and it helped a lot but a GI put me on Neomycin 2 years ago and I have never been the same since. I take probiotic pills that are dairy free and FOS free - can't do soy. Jerri, I may be one of the ones who is the worst of the worst so you can't go totally by what I have done or am doing. Many on here have just eliminated gluten and dairy and are doing fine. Others have to eliminate soy and other things. It's a process and sometimes a long process. Read past posts, maybe get some testing done and hopefully you'll figure out what works for you. We all are different.

Pat
Post Reply

Return to “Main Message Board”