Crohn's Disease - Under the knife

by Neil
(UK)

Hi all,

First of all, I would like to thank all the contributors to this site as there are some excellent stories and personal accounts of Crohn's sufferers and how you cope with daily life. I admire you all for the resilience you display and the motivation you have to lead a normal life.

The purpose for posting here is regarding my sister who has suffered with Crohn's since she was 13 years old. She is now 28 and still battling this terrible illness.

She has been in and out of hospital pretty much every year since she was diagnosed and the latest operation she had was to have her bottom sewn up to prevent further infections in the back passage. She was previously having difficulties in all daily activities, including sitting down, due to the infections she was getting down there. She thought the latest operation (Dec 2011) was going to be the cure for her to get back to some sort of normal life, however, after seeing her consultant on Friday, they say it hasn't worked and that they need to operate again to remove the infected area.

My sister has quite literally given up on beating this and I'm wondering if anyone can give any advice and a bit of hope. I've been trying to convince her to join a forum like this but she doesn't like to talk about her problems to people she doesn't know. I know she's suffering inside and it's difficult for me to see her in the state that she's in. I couldn't even imagine what she is actually going through. Has anyone else been in this situation or do you know someone who has?

Anyways, thanks for reading and I anyone can provide me with some information or motivational stories that I can relay back to her.

Thanks,

Neil

Comments for Crohn's Disease - Under the knife

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Dental Health NEW
by: Anonymous

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To Lydia: C. dificile and comments... NEW
by: Peter Bray

Angel on my shoulders:

You are a powerhouse of information! My daughter Cathy, 44 died 2/24/12 after 24 years of Crohn's disease and every worthless medication on the planet, plus a recto-vaginal fistula last year and a resulting temorporary looped ileostomy last April 2011.
My wife Janice, 65 has had microscopic, collagenous colitis and steady diarrhea for 9 months; had a colonoscopy, docs saw nothing, did a biopsy, put her on corticosteroids which made her psoriasis worse, and she has been on Tylenol and God knows what else for previous whip-lash auto accident pain for years---I suspect her intestines are a train wreck of over the counter pain meds...the docs are out to lunch...
Could be she has irregular bacteriological intestinal microflora overgrowth...and the docs throw up their hands in ignorance..What do we do next? Must two of my family members succumb to intestinal ignorance? We lost her daughter 4 1/2 years ago at age 40 to an aggressive cancer...we are running a lay household medical ward---Please E-mail me separately at PetrBray@AOL.com, I am a lay advocate/activist with my continuing "War on Chron's"--I need your input for my wife! Thanks, Peter Bray, Benicia, CA
Peter - let's talk on a separate thread NEW
by: Lydia D.

Hi Peter,

Sorry, in my drugged up state I didn't realise initially that you were talking to me. Let's start a new thread on MAP and not hijack Neil's thread.

Lydia D.
Crohn's Disease - Under the knife NEW
by: Lydia D.

Something that the doctors do not consider (or rather tend to be totally ignorant of) is the effect of medication on intestinal absorption. There is increasing evidence that many (perhaps most, or even all) medicines decrease absorption of one or many nutrients. The American pharmacist, Suzy Cohen, has written a book on this:

http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

PPIs (Omeprazole and co.) cause malabsorption of vitamin B12, magnesium, copper, etc. I reiterate that PPIs can cause bacterial overgrowth in particular with Camphylobacter and other pathogens, etc.
http://www.natural-health-information-centre.com/copper.html
http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html

It is well known that corticosteroids lead to potassium deficiency/salt imbalance. Too little potassium leads to high blood pressure, etc. http://www.drugs.com/mtm/prednisolone.html

Any imbalance in the body can lead to, for example, depression and other organ dysfunction/failure.

I have not bought Suzy Cohen's book, but am considering it. Thus, I cannot say whether or not it is good, but it sounds like a good read and should definitely be compulsory reading for doctors.

For further information I recommend the following sites:

www.medscape.com (professional site, patients welcome, hassle-free log-in required)

www.drugs.com (drug and supplement side-effects and interactions)

http://www.ncbi.nlm.nih.gov/pmc/ (PubMed - medical scientific abstracts and sometimes entire papers)

Crohn's Disease
http://www.crohns.org/congress/submission01/appiv.htm
http://www.mayoclinic.com/health/crohns-disease/DS00104
http://www.umm.edu/patiented/articles/how_serious_crohns_disease_000103_4.htm
http://www.umm.edu/altmed/articles/crohns-disease-000043.htm
Crohn's Disease - Under the knife NEW
by: Lydia D.

Sorry, chaps.

I just need to correct a typo. It is C. difficile - Clostridium difficile and not e-difficile.

C. difficile and other pathogens can be particularly problematic on antibiotic therapy and on long-term proton pump inhibitor (PPI) therapy.
https://en.wikipedia.org/wiki/Crohn%27s_disease
http://www.bioportfolio.com/resources/pmarticle/242752/Systematic-Review-The-Use-Of-Proton-Pump-Inhibitors-And-Increased-Susceptibility-To.html
Steve & E-deficile positive! NEW
by: Peter Bray

Steve:

Good for you, Dr.Tom Borody can be followed on the IBD videos also on www.Youtube.com...he's a sharp doc!...How smart to test for e-deficile, many so-called docs have NO clues---Daughter Cathy, 44 was negative for e-deficile but died Feb. 24th, 2012 after 24 years of worthless immuno-suppressive western medicines...Beware those that say there is no cure for Crohn's, there is--Ask Borody and others, it's in the scientific papers, it has to do with killing the MAP bacteria from Johne's-infected dairy cattle, mycobacterium avium paratuberculosis...do a web search and then go to www.crohns.org---or e-mail me and I'll send you further evidence. PetrBray@AOL.com

Peter Bray, Benicia, CA "War on Crohn's Disease"
Think outside what your being told about your disease NEW
by: Steve. Sydney Australia

If your like me diagnosed with Crohns you been told the following
Cause unknown
No cure
See you in 3 months, take these drugs
Good luck

There is an alternative

Read about Professor Thomas Borody from Five Dock Sydney Australia.
After having Crohns for a year with two hospital stays, huge amounts amounts of medication, numerous trips to specialists and blood tests with 25 + bowels movements a day not sleeping at night and taking 4 months off work and on methotrexate for the last six months and really sick of everything I went to see Thomas. After a blood test the results returned i was E-Deficile positive. two courses of medication and I feel great and improving everyday. I have completed my third full week back at work ( a rarity to go to work more than twice a week)I feel fantastic. My normal specialist didn't even test me for E-deficile even though its killing people. In America greater than 100K have died so far and its only just hit the shores of Australia last year. I have suffered like you others with crohns. Unless you have it is hard to describe the full extent of the emotional and physical suffering.

All the best Steve

Crohn's Disease - Under the knife NEW
by: Lydia D.

Hi Neil,

I have had to rewrite this first section because it got sucked up into electronic hyperspace and destroyed.

It is especially hard to be diagnosed at such a young age. I had signs of Crohn's when I was a child, but was first diagnosed with severe disease, needing immediate colorectal surgery, when I was 32. Up to that time I had a rolling diagnosis of severe psychosomatic illness.

It is very easy to give up with chronic illness and very normal to end up depressed. I refer you to this paper: www.human.ritsumei.ac.jp/hsrc/resource/series/01/pdf/01_96.pdf

Depression in Crohn's patients is also frequently due to malnutrition/malabsorption.
http://www.healingwell.com/library/depression/article.asp?author=oliva&id=1

I suggest that she talks with her doctors about taking a vitamin B-complex, magnesium, zinc, calcium and vitamin D, etc. http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

Like your sister, I had an infected back passage and open suppurating sinus after an operation in 1993. It did not resolve on high-dose antibiotics and I had to have further major surgery and be sewn up again some 8 months later. Fortunately, in my case it worked and I was able to find a new job and restart my life, which had been on hold for nearly 3 years.

The motivational stories are difficult. I remember bashing my head against the wall while sitting on the toilet to take my mind off the pain in my nether regions. I also frequently thought of ending it all - there is only so much pain and abasement one can take. What is very important is that she manages the doctors and does not allow them to kick her around or mismanage her disease. This is, naturally, nigh impossible when one feels so ill.

To enable her to sit part of the time - has she an inflatable ring cushion? http://www.amazon.com/Carex-Inflatable-Ring-Cushion-Rubber/dp/B0000533DY/ref=sr_1_1?ie=UTF8&qid=1332432015&sr=8-1

If you can encourage her to keep a patient food/mood/symptoms/medication diary, it would really help her. I refer you to the following:

http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

I have made some dietary suggestions in the second half. As she is a seasoned Crohn's patient, it probably is just what she does anyway. However, the last few pages of this paper might have some new information for her on diet and treating diarrhoea http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf
Lydia's comments and PREDATOR NATION... NEW
by: Peter Bray

Do you know anything of MAP, mycobacterium avium paratuberculosis bacteria from Johne's Disease-infected dairy cattle entering the human food chain? I'd be interested in knowing your background or experience with Crohn's Disease. My daughter Cathy Bray,44 died February 24th, 2012 after 24 years of fighting Crohn's with worthless western medicines: sulphasalazine, Asacol, MP-6, prednisone steroids with steroid psychosis and psych ward hospitalizations several times, to the grand useless dragon of them all, 5-7 years on Remicade infusions that allowed her sphincter muscles to be eaten away while increasing her ulcerations from transverse colon all the way to the rectum. Me? I'm her Dad, advocate, medical historian and lay researcher; my "War on Crohn's" is now continuing after a short hiatus to write her Memorial online at "Cat's Pages," at www.peterbray.org/pedro, then write her Obituary, take part in the family memorial,cremate and receive her ashes, etc. My first 12 newspaper columns of my "War on Crohn's" are available by pdf and e-mail, free to anyone on the planet who is suffering from Crohn's Disease and is disgusted with this PREDATOR NATION and it's total disregard for Crohn's sufferers... Crohn's IS being arrested in England, Australia, and Texas IF you can withstand the flu-like symptoms of its 3-antibiotic regiman...Cathy could NOT in the summer of 2010, and...it's all detailed in my "War on Crohn's" with so much more to come---Don't let millions more die from Crohn's on this planet, petition your government to intervene with meaningful public health laws, eradicate the pathogen at its source, mycobacterium avium paratuberculosis from Johne's Disease-infected dairy cows...do your own research, prove it to yourself...Doctors and pharmaceutical houses won't do it, "Chronic illness is good for business." --PetrBray@AOL.com

Benicia, CA, USA
Crohn's Disease - Under the knife NEW
by: Lydia D.


She should not eat any packet or fast food, nor should she drink cola or sodas, eat pure sugar sources/honey/maple syrup, etc. They cause overacidification of the body and exacerbate the Crohn's and/or chronic diarrhoea. http://www.livestrong.com/article/14937-10-tips-for-curing-depression-naturally/

She should eat 6-7 small nutritionally balanced meals a day, which will be easier to digest and not cause so much pain as 2-3 big meals. If she is getting blockages, then she should puree her food.

I generally ask people to imagine that their arm is covered with ulcers and is weeping and bleeding. Then I ask what sort of foods would they rub into their arm if they had to. She should avoid spices, garlic, mustard, vinegar, alcohol, anything fibrous/skins/seeds/nuts, etc.

Yoghurt, mash (sweet) potato, carrots, parsnip, broccoli flowers, apple mousse, steamed peaches, chicken, fish, etc., may be OK. The last few pages of this paper have some very good dietary information for patients with chronic diarrhoea: http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf

It is amazing what we can and must endure. It is not going to be easy to get her interested in herself and bullying is out of the question, but perhaps offering to take her on a gentle walk in the sun will help. She will need to sleep and rest a lot and that must be respected. Doing her shopping for her or helping her with other chores will all help if she permits it.
No hablo espanol! NEW
by: Peter Bray

No hablo espanol---En ingles por favor!

Peter Bray
Peter Bray NEW
by: Anonymous

Peter Bray por favor me envie também o arquivo por favor rioclube@gmail.com
Worthless meds...don't cure Crohns! NEW
by: Peter Bray

Research the Internet for the anti-MAP antibiotic program occurring in Australia with Dr. Tom Borody and Dr. W. Chamberlin in Texas and watch the IBD videos on Youtube.com from the 10th International Colloquium in Minneapolis in 2009 on Paratuberculosis...petition your Congressmembers for a CURE for Crohns, not just more useless western, symptom-suppressing medicines that do NOT cure Crohn's...We went that route for 24 years and Cathy Bray,44, my daughter passed away February 24th from Crohns complications...her system could NOT take it any more--her pain is alleviated. She is dead. My "War on Crohn's" goes on. Read about Professor John Hermon-Taylor in England who is working on a Crohn's cure...to kill the pathogen MAP, mycobacterium avium paratuberculosis from Johne's disease-infected dairy cows that gets into the dairy food chain in England, Ireland, Canada, the US...read, read, read...the information is there on the INternet, scientific articles, your gastroenterologist does not know about it because he and/or she only dispenses useless symptom-suppressing pharmaceuticals that only make continuing profits for their manufacturer..."Chronic Illness is GOOD for Business!" Join my "War on Crohn's," I'll send you free by e-mail and pdf what we have learned,the hard way in 24 years of Cathy's Crohn's... solicit input from your Congressmembers! E-mail me at PetrBray@AOL.com

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