Info: Ulcerative Colitis

Subject: Info: Ulcerative Colitis
From: TheMuse
Date: 11 Mar 01 - 06:38 PM

I have noticed Ulcerative Colitis mentioned in quite a few threads lately and decided to start this one hoping that it might help someone.

I sympathize wholeheartedly with anyone who has Ulcerative Colitis or knows anyone with it. I suffered with UC for 7 years. Going between flare ups and remission. Being afraid to go out of the house at times and always afraid to travel that I would have to rush home to a doctors care. The good news is there is a cure. It's surgery. 6 1/2 years ago I had surgery to have my colon removed. This does not mean that I have to deal with an external or artificial "appliance" of any kind. I have what is called an internal "J-pouch" constructed of a portion of my small intestine. It acts as a reservoir and as far as I am concerned I am "normal" with normal bowel function. More normal than I felt with the disease that no one knew much about or understood, much less wanted to talk about.

If you want more information go to:

www.j-pouch.org


or if you want to contact me directly my email is:

[e-mail]


I would be more than happy to offer my support and experiences to anyone.

Diane

Subject: RE: Info: Ulcerative Colitis
From: wysiwyg
Date: 11 Mar 01 - 06:42 PM

God bless you, Diane.

~S~

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 11 Mar 01 - 07:40 PM

Diane,
Thanks for being so generous. I have family members who suffer from UC. Our Matt goes through hell with it. And it's embarrassing to talk about. Interesting, we have a plethora of fart threads with unlimited, uninhibited participation, but suggest colon removal and people get squeamish.

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 12 Mar 01 - 10:06 AM

My daughter has Crohns disease, (diagnosed 5 years ago) and lost her large intestine at 11 years of age. Complications, and three surgeries later, she still suffers. UC only affects the large intestine; Crohns affects everything from mouth to anus. Since there are very few support groups for this condition, if anyone on this forum wants to ask questions, or discuss the disease, I will try to help. Yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 12 Mar 01 - 10:12 AM

Dave, My cousin's daughter has both Crohn's and CF.I'll see if she would like to get in touch with you.Her newborn son has also been diagnosed with CF. The worst of it for a parent is watching your child in pain and not being able to make it stop.

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 12 Mar 01 - 10:19 AM

Sinsull. Not only watching the pain, but making descisions that will disfigure her for life; and having to practise my medical skills on her, is the hardest thing I have ever done in my life.(and I have had to do some Very Hard things in my life) Yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: chip a
Date: 12 Mar 01 - 01:19 PM

Hi. I'm Chip A's wife. I was just reading the posts re/ crohn's disease. I have been living with this disease for the past 27 years. I have been thru many surgeries, including colectomy, various resections, 2 illeostomies which the latter one has been closed (or reversed). Crohn's disease is such an awful thing to have to live with. At the moment, I'm in remission. **knock on wood!** Since I don't have a large intestine and abt. 2 feet of my small intestine, I have to really watch what I eat (or if I can eat) if I plan on going anywhere. My life revolves around KNOWING where a restroom is, no matter where I go. Hopefully, with more research, a drug will be developed to totally rid the world of Crohn's! That would be so wonderful! I'm just curious, but does anyone else out there with Crohn's or IBD suffer from any other diseases or auto immune problems?? I also have Addison's disease. I've read that some people that have one auto immune disease may also have another to add on top of it. I'm glad to know people are communicating with each other on these topics! Any questions or replies will be very much appreciated. Thanx! Tish

Subject: RE: Info: Ulcerative Colitis
From: Matt_R
Date: 12 Mar 01 - 01:22 PM

I don't know if it's auto-immune related, but I have lots of eye problems...

Subject: RE: Info: Ulcerative Colitis
From: Lonesome EJ
Date: 12 Mar 01 - 02:02 PM

Dehydration is a common side-effect of Crohn's, Colitis, and Illeitis, and continual dehydration can lead to heart disease. It's very important to drink a lot of water with these conditions.

Subject: RE: Info: Ulcerative Colitis
From: kimmers
Date: 12 Mar 01 - 02:13 PM

One of my partners has UC. She does amazingly well, and I didn't even know about it until I saw her casually popping some medications from a bottle in her desk. We tend to forget she has it, until she has a bad day and has to stay home.

Any chronic illness is a pain, literally... especially disorders like UC and Crohn's that tend to strike the young and otherwise healthy. Kudos to those who keep on going and doing the best they can!

Matt R, the eye problems are part of what physicians call the extraintestinal manifestations of inflammatory bowel disease (if I read this aright, and you are one who suffers from one of these illnesses). Besides inflammation of the eye, patients can have funny lumpy skin rashes, joint pains, and of course fatigue.

-dr. kimmers (home sick from work, and bored)

Subject: RE: Info: Ulcerative Colitis
From: TishA
Date: 12 Mar 01 - 04:31 PM

Matt R...... I once had some pretty bad eye problems, too. The doctor said it was from the prednisone that I was on. I can't remember the term he used as to the condition this drug might cause to your eyes, but he did call it something. (???) Are you taking prednisone? If so....have you been on it for quite awhile?

Subject: RE: Info: Ulcerative Colitis
From: Matt_R
Date: 12 Mar 01 - 04:43 PM

Yes Kimmers, I've had UC for almost 2 1/2 years now.

Tish, I'm not on prednisone...just Asacol. I've never had inflamed eyes, but it seems more like my eye muscles are weakening. I have a strabisma that seems to be getting worse over time.

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 12 Mar 01 - 09:56 PM

Emma has cataracts because of prednisone steroid treatments. Joint pain is also a side effect of osteoperosis induced by steroidal treatments. Since the root cause of IBD/UC/Crohns is not known, all treatments consist of treating symptoms. The treatments sometimes cause side effects that are as bad, if not worse than the disease itself. (Methotrexate injections which help until lung/liver damage forces you to stop using it) New developments are having mixed results. Emma was the second child in Canada to receive Remicade (an experimental TNF drug made by genetic splicing} The results obtained on children in Canada, are reportedly not as rewarding as those in the USA. The searvh for cause and cure continues. Yours, Aye. Dave (who just put Emma back in hospital today)

Subject: RE: Info: Ulcerative Colitis
From: Sorcha
Date: 12 Mar 01 - 09:58 PM

Oh, Dave, give Emma our love and prayers........it's hard for all of you.

Subject: RE: Info: Ulcerative Colitis
From: Sorcha
Date: 12 Mar 01 - 10:47 PM

Rosie, Alison's sister is taking acidolpholus......would that help either Emma or Matt? Don't know......

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 13 Mar 01 - 12:04 AM

The auto-immune disorders in my immediate family are pretty heavy:

My mom has multiple sclerosis (struck at age 25, in remission until a few years ago), Type 1 diabetes (onset at age 35, which is rare), and also suffered a bout of tuberculosis shortly after the diabetes was diagnosed (her father and brother had it, too, and my younger brother and I had to take antibiotics for a year when we were kids because our TB susceptibility was so high).

My brother also got juvenile diabetes at the same age my Mom did: 35. Neither of them were overweight.

One year before that happened, my brother's daughter (age 11) was diagnosed with juvenile diabetes.

(there was no other diabetes in our family until my Mom's, except my dad's aunt who was fat and had Type 2. No other MS either.)

My sister had arthritic lupus; fortunately, it seems cleared up since she stopped working the swing shift. She still looks way older than me, tho; and is only 11 months my senior.

Perhaps not coincidentally, all three of them smoke like chimneys.

I have wondered on occasion if I might have a tendency towards any of the disorders mentioned in this thread. Both my maternal and paternal grandfathers died of bowel cancer (it was detected after it had already gone too far). So I have this fear, perhaps understandably. I also know a couple of people who had UC and had all or part of their colons removed.

I do feel that with age and experience and listening to my body I have learned how to take better care of myself...try to eat right and in healthful combinations. I think many people have stomachs of steel in their youth and just carry on eating the same way for years even though most adults have much more delicate digestion than they'd like to believe. And with my obvious genetic tendency towarsd auto-immune disorders I think not living healthfully would just be stupid of me.

I am always shocked to realize the dependency of Americans on OTC products like antacids or laxatives. Anyone using these products with anything approaching, you'll excuse the pun, regularity, should seriously consider sweeping lifestyle changes. I think relying on such "cures" also speaks to this embarassment or fear people experience when addressing what is, after all, a basic human function. All holistic healing systems will tell you that proper assimilation and elimination of nutrients is the root of health. Yet American doctors don't even take courses in nutrition in medical school...nor in stress management, something also at the root of many auto-immune disorders.

It is also true most auto-immune disorders (including diabetes, multiple sclerosis, lupus, chronic fatigue syndrome, and fibro-myalgia) affect women more often than men...

Subject: RE: Info: Ulcerative Colitis
From: alison
Date: 13 Mar 01 - 02:06 AM

Acidophilus is a natural treatment...... basically it replaces the bugs which live normally in the gut... helping to improve digestion (these are killed off by illness and antibiotics).... it could certainly help a bit.. but won't be of much use in severe cases....

but it is certainly worth taking a course anytime you have been on antibiotics to recolonise the natural gut flora... and can help with heartburn...

I had reflux oesopagitis, (caused by heart burn)... had the works including gastroscopy and any amount of antacid medication....... fixed it completely with a months course of acidophilus...

it is available in any natural health shop, (and many pharmacies now too).. they should be kept in the fridge.. and get as big a doseage as you can.... I used to give it to the kids too, (slip some of the powdered form into their juice) after they had had antibiotics.....

certainly worth a try....

slainte

alison

Subject: RE: Info: Ulcerative Colitis
From: alison
Date: 13 Mar 01 - 02:09 AM

Dave,

sorry to hear about Emma..... love, prayers, thoughts and big hugs heading to you and yours...

slainte

alison

Subject: RE: Info: Ulcerative Colitis
From: Lady McMoo
Date: 13 Mar 01 - 04:06 AM

I can sympathise Peg. My mother died of bowel cancer and my father of pancreatic cancer, both very young so I am very sensitive to the problem as well. It was not a pleasant thought thinking about a colonoscopy but I'm glad I had it done as I recently had a very large polyp removed before it turned cancerous. I feel I had a lucky escape and, in reality, the procedure was not all that bad. I'll be returning every year as I'm in the high risk group. I also had a very good friend who died recently in his 40's from bowel cancer and that shook me up a lot.

I think if one has a history in the family it's essential to be checked regularly, certainly after a certain age like 45. Good diet will help but won't necessarily prevent the problem if one is genetically predisposed.

Dave, all my very best wishes to you and Emma.

Also to all those is this thread who are suffering or who know someone who suffers from these painful bowel disorders.

Peace

mcmoo

Subject: RE: Info: Ulcerative Colitis
From: Steve Parkes
Date: 13 Mar 01 - 04:19 AM

Mom had UC and arthritis from her early years; She was in and out of hospital several times when I was in primary school -- not good for a growing lad, and not too good for Mom either. She's pretty fit these days, at seventy, but has to stay within panicking distance of a loo when she's out. My bets wishes and (non-patronising!) sympathy to you sufferers.

Steve

Subject: RE: Info: Ulcerative Colitis
From: TishA
Date: 13 Mar 01 - 09:32 AM

I'm amazed at the number of people....just in this forum....that have these types of problems or have relatives with these problems. Wow. I think it's a great idea to be checked regularly if a certain type of problem seems to run in your family. It can't hurt.....and it could save your life! I'm not sure if they've linked Crohn's with heredity (??? does anyone know??), but my half sister and I both have Crohn's disease. We share the same mother. Mine was detected at age 21. She was diagnosed in her late 40's, but she has had bowel problems all her life.

Dave.....prayers and all the best to you and Emma!

Thanx for listening, all. :-) Tish

Subject: RE: Info: Ulcerative Colitis
From: Matt_R
Date: 13 Mar 01 - 11:34 AM

It's true...two of my male cousins (both under 40) have UC as well. My Mom always wonders if these things have something to do with nerves...she admits if she had to pick the 3 most nervous, easily-upset people in our family, it would be me, and my cousins Michael & Joe. And we all have UC. Very strange.

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 13 Mar 01 - 11:40 AM

good health and healing to all; mcmoo, your courage and good atitude are inspiring!

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 13 Mar 01 - 11:54 AM

Researchers believe there is a genetic link to the IBD diseases, but they have been unable to find it. Several generations in the same family have shown sporadic outbreaks with no real identifiable pattern. Identical twin investigations have not proved conclusive either. This series of diseases have proven to be the most difficult to control because of varying factors such as these. Studies in the Uk using a combination of steroid and antibiotics have shown that bacteria may be responsible. Some people experience remission for years. Some drugs work well on the small intestine and some in the large. The balance between a doctor controlling the disease, and losing control, may be as delicate as using half a tablet (2.5 mgs) Reducing the medication until you find that balance is a fine art. We continue to support R&D and there are new drugs and treatment combinations that seem to be promising. yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 13 Mar 01 - 03:29 PM

Good thoughts to you and Emma, Dave. Hang in there.
Mary

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 13 Mar 01 - 03:31 PM

Good thoughts to you and Emma, Dave. Hang in there.
Mary

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 14 Mar 01 - 10:02 AM

I met a nice young man last night (at Pagan Night Out, an event I organized some time ago; we meet for drinks and snacks at a local pub every month on the 13th!).

Anyway, he has Crohn's disease. He is 31 years old. It is mostly under control but he takes a lot of medication. He says he has lost a lot of weight (he does look pretty thin for his height, though his skin tone and general demeanor seem quite healthy). I asked him about trying holistic treatments (I am such a mom sometimes), which he seems very open to. He was a vegan for years and said that helped. I also recommended a Chinese herbalist (in his neighborhood) and a local Ayurvedic physician whose big thing is detoxification fasts.I told him about the success many of my friends with various auto-immune disorders have had with such practitioners.

here is my question: does anyone out there know of any natural methods for dealing with Crohn's disase that will lessen or eliminate the need for anti-biotics (which wreak havoc on the gut in other ways but are often needed for ulcers)? He meditates regularly, which I am sure helps immensely. But what else can he do, in terms of nutrition, or herbs, or other natural treatments?

Any help would be appreciated; I would like to forward the information to him.

Thanks, all; this has been a very informative and supportive thread.

Peg

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 14 Mar 01 - 11:05 AM

Peg. There are some serious studies being done to complement or replace chemical treatments. Unfortunately, there has been little chance for conventional medecine to study them using controlled methods; hence wild claims of success from a variety of natural sources, which cannot be confirmed scientifically. This has the double whammy of not allowing conventional doctors the ability to use them as a an alternate treatment. All roughage should be eliminated from diet and carefully reintroduced to find "trigger" foods. Clearly this process can a does take years of carefull dieting. Some things like seeds and nuts have to be eliminated completely. I believe that Alison's reference to Acidophilus as a very interesting treatment bears study. Repairing damage from steroidal and antibiotic treatment is an area that natural medecine can help. The problem I see is mating the two disciplines and doing proper evaluations. Yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 14 Mar 01 - 08:38 PM

thanks, Dave. I will pass that along.

Subject: RE: Info: Ulcerative Colitis
From: TishA
Date: 14 Mar 01 - 10:47 PM

Dave...you were mentioning damage from steroidal and antibiotic treatment....Along with Crohn's (which has been in remission for over 4 years), I also have Addison's disease. Therefore, I HAVE to have steroids daily, for the rest of my life, in order to survive. I take 30 mg daily of hydrocortisone or cortef. I have been taking this for 2 1/2 years. Is this type of steroid as dangerous as others? If so, I don't think there's much of anything that I can do about it because I do have to take them. I'd really like to hear your opinion on this, so if you could please reply, I'd appreciate it!

Thanks, Tish

Subject: RE: Info: Ulcerative Colitis
From: alison
Date: 14 Mar 01 - 10:59 PM

Peg....

reflexology, and colour therapy could help too.... to restore the body's natural harmony..... I fully intened to try this on Rosie when she comes over to visit me later in the year.....

slainte

alison

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 15 Mar 01 - 10:04 AM

Dear Tish. I doubt if you need worry about the amount of Hydrocortisone your dotor prescribed. Your bodys ability to produce it naturally has been compromised (Addisons) and since it is a natural steroid that you need to maintain your good health there should be no problems. The balance will be monitored by your doctors, and adjusted as required. My daughter has to take Cortone, to help her adjust to the loss of her ability to produce it naturally, due to long term agressive use of prednisone to control her Crohns. Eventually her body will resume its production; but we must constantly monitor and adjust her levels until it kicks in. (monthly blood tests) Yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 15 Mar 01 - 10:13 AM

Alison;

I know a bit about reflexology; I will lend him my book on it.

As to coloru therapy; are there speciifc colours whch would help? or is it speciifc to the person?

I wear a lot of green and I swear it keeps me healthy!!! (balance, life, nature; plus it emphasizes a rosy complexion)

Subject: RE: Info: Ulcerative Colitis
From: TishA
Date: 15 Mar 01 - 02:29 PM

Thanks, Dave, for the input. Whew....I feel a little relieved, now. *S* I'm sorry your daughter is having a rough time, but it sounds like Dad is taking care of things! I wish her all the best.

My husband and I were wondering if you are a doctor? If not,you should be. Thanks again for your reply.

Tish

Subject: RE: Info: Ulcerative Colitis
From: Dave (the ancient mariner)
Date: 15 Mar 01 - 08:50 PM

Thank you Tish & Husband, but I am not a doctor (although on one ship my nickname was "Doctor Dave") I have been well trained; and had to perform many emergency medical duties. Both in the course of my work as a ships officer; and as a Coastguard Officer, Search and Rescue Specialist. Yours, Aye. Dave

Subject: RE: Info: Ulcerative Colitis
From: alison
Date: 15 Mar 01 - 08:56 PM

Peg,

I'll let you know when I finish doing a "colour" course....

but with a lot of these "weird" therapies... its an intuitive thing.. if you feel they need green / pink/ blue... then use them.......

one book I have suggests, yellow and orange for the intestines and digestive system...... personally I feel that the areas need to be calmed down rather than stimulated so I'd go for a calming colour.....

there are plenty of online "colour healing" sites .. if you do a search you'll find them...

slainte

alison

Subject: RE: Info: Ulcerative Colitis
From: Matt_R
Date: 15 Mar 01 - 09:03 PM

I never heard of color therapy before...and especially for UC! Interesting...

Subject: RE: Info: Ulcerative Colitis
From: GUEST,Dave (the ancient mariner at work)
Date: 16 Mar 01 - 12:09 PM

This link may prove of interest to people on this thread. Click Here

Subject: RE: Info: Ulcerative Colitis
From: GUEST,Vinland
Date: 16 Mar 01 - 12:12 PM

Peg,

As someone who has suffred from UC for many years, I've found one approach that seems to work for me. It's a diet based on the book 'Food and Gut Reaction' (I've forgotten the author's name - something like Gottchaulk) The author's daughter suffered from UC and she researched different approaches and came up with a theory based on the lost of the ability of the intestines to absorb certain sugars.

The basis of the diet is to avoid most sugars, eliminate wheat products, starches and alcohol. It's a tough diet to stick with but it works!

I'm not at home right now but I'll try to send more info when I'm back in a couple of weeks. Meanwhile, you might try a search at Indigo (it's a Canadian book) or other bookseller. Maybe your local library can track it down.

A local guitar virtuoso credits the book with saving his life! (The diet is recommended for Crohn's sufferers as well.)

Good Luck, Vinland

Subject: RE: Info: Ulcerative Colitis
From: TishA
Date: 16 Mar 01 - 06:37 PM

Vinland....

I'm very interested in hearing more about this diet. Could you tell me how and why it works?

Awaiting your response, Tish *S*

Subject: RE: Info: Ulcerative Colitis
From: Peg
Date: 17 Mar 01 - 01:25 AM

thanks Vinland; this sounds promisng. Would love more info when you get a chnace. have a great trip!

Peg

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 21 May 01 - 04:31 PM

Latest news on Crohn's:

Scientists Identify Gene Defect for Crohn's Disease Reuters May 21 2001 3:43PM

LONDON (Reuters) - Scientists on both sides of the Atlantic said Monday they have independently identified a gene linked to Crohn's disease, a digestive disorder that attacks mainly young adults. In two papers published in the science journal Nature, American and European teams of researchers describe how a mutation in a gene called Nod2 can increase a person's susceptibility to the illness.

The discovery, which will be presented by both groups at a medical conference in Atlanta, Georgia, sheds new light on the complex relationship between genes and the environment and could spearhead new treatments.

"Finding this crucial genetic clue gives us our first clear insight into the complex causes and mechanism of Crohn's disease," said Judy Cho, of the University of Chicago, who co-authored one of the research studies.

The illness strikes about one in every 1,000 people in western countries. Many sufferers are under the age of 30. The cause of the chronic inflammatory illness is unknown but scientists suspect is it due to genetic as well as environmental factors.

There is no cure but treatments can suppress the symptoms such as abdominal pain, diarrhea, fever and weight loss.

Gabriel Nunez, of the University of Michigan and a member of the American team, said scientists had suspected there was a link between the genes and bacteria residing in the gut that leads to the development of the disease.

"The discovery of Nod2 may explain this missing-link connection between genes and bacteria," he said in a statement.

Dr. Gilles Thomas, of the Jean Dausset Foundation in Paris, and a team of European scientists said Nod2 is not the only gene involved in Crohn's disease but its discovery may help researchers find the others.

"It will also contribute to the identification of associated environmental factors and focus the search for specific therapies," he said in the Nature report.

The researchers suspect Nod2 and another gene called Nod1 are involved in how the body's immune system reacts to bacteria in the gut.

Having one copy of the abnormal gene doubles the risk of developing the illness. Two mutated genes increase the chances 15 to 20 fold.

About 15 percent of patients with Crohn's disease have the mutated gene, according to the scientists.

Subject: RE: Info: Ulcerative Colitis
From:
Date: 21 May 01 - 08:23 PM

You might want to read up on possible connections between grain intolerance, leaky gut and these disorders. I believe Dr. Atkins discusses them in some of his books. He is a complementary medicine doctor. I have read this also elsewhere. There is also a test for grain intolerance through Diagnos-Techs in Kent. I took it as part of another test and found out I was intolerant, although I had no symptoms, except I think it is responsible for my weight problem. Some people can digest grains with apparent ease and some can't. I think wheat is supposed to be one of the worst.

Subject: RE: Info: Ulcerative Colitis
From: Matt_R
Date: 21 May 01 - 08:33 PM

Thanks for that, Sins! This is good news for us!

Subject: RE: Info: Ulcerative Colitis
From: SINSULL
Date: 21 May 01 - 10:17 PM

I know, Matt. I copied my cousin on it. Both her children are young enough to benefit from this. So are you for that matter!