randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had the follow up appointment with my gastro. i have had four diverticulitis attacks, this one being the worst. i have one at least every year, sometimes two.
he says it's now time to visit a surgeon and see what he says.
he told me of a procedure where you basically have the colon portion removed and they reattached it immediately, no stoma bag. that way you don'thave to have two surgeries.
he said it's something to consider and not an emergency that i have to decide now but it is basically playing russian roulette. next attack i might not be so lucky.
he prescribed celexa and something else for the colon. still said i have two conditions, ibs and the diverticulosis.
so i'm back to square one. a prescription for abx to fill before i leave in january and surgery to consider.
i think any surgery with lyme is going to be twice as difficult to recover from. and it's won't cure the ibs, which is severe.
what a mess...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Randibear, my nurse who is 28 years old had to have her colon removed. She had a clinic in Ohio do tests first to make sure that was the right course of action.
Her verdict, was that her colon was dead and not moving food at all. But, she had all those tests done to make sure that is what she had to do.
Can you get a second opinion to make sure the surgery is your only option?
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
There is a great site with a lot of helpful info on IBS. HelpforIBS.com
I was amazed at some of the trigger foods and learned a lot in regards to soluble fiber vs insoluble. I have ordered a few things from the site which are helpful as well. Her book had a lot of great info.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
My sis-in-law just had another round of div. so severe that a part of her colon had also died off. Resection ink after the removal of the dead portion (majority of it), and no problems thus far, one month out.
She has other medical issues as well, and other than a bit of a reaction to some meds last week, she's doing very well.
Get that second opinion, for your peace with it all. Best of luck.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i called my sister and talked to her. she asked me if i was "out of my mind". i read her the last ct scan and she said it wasn't that bad.
she kept saying "oh no, no, no..."
her opinion is that unless there is significant damage to the colon or it is life threatening not to have it done.
course she has the opinion that doctors are just wanting to make money right now and since i have two excellent insurances they want it before this care system kicks in. she's cynical...
my colon is not damaged altho a part of it is narrowing. i have these attacks and i really don't know what's causing them. she said to not have it out strictly because of "preventative" measures" and that "you don't remove your brain because of fear of brain cancer, do you?"
anyway she's against this totally.
my husband said he would support me in whatever i decide but he's against it also. that and the fact that 3 out of 5 people who go into the hospital or visit it, get some kind of infection. he just doesn't understand why they would take it out because of "mild" diverticulitis.
well the gastro said it's not something i have to consider immediately, it can wait....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would consult a good naturopathic doctor (one with expertise in the entire GI system)
and also a professional trained in UPLEDGER visceral manipulation. See Upledger's site for those in your area.
There are many other avenues to consider. Now, it may be that a surgical procedure on one part of the colon may be needed but, IMO, that is not yet clear.
So much more to find out first, from a range of other professionals -- not just for a 2nd opinion but a full on information gathering project.
Start with the facts, the images, etc. My guess is that there are several other way to successfully approach this but, if not, at least then all the homework has been done prior to any drastic measures.
And if any surgery is done, visceral manipulatin afterward can help prevent scarred tissue, so some degree. Scarred tissue from surgery can cause pain for years to come so prevention is important.
But VISCERAL MANIPULATION might help prevent a surgery.
Along with that, naturopathic doctors who are trained in matters of surgical preparation and post-operative healing have a host of options to help, too.
But I'd rather first explore the methods they have to prevent surgury if at all possible. -
[ 12-30-2012, 01:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Find a practitioner -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Of course, ANY professional you see would be best to be lyme literate. Most others would not the connection of lyme to "Bell's Palsy of the Gut" such as detailed here:
PRACTICAL GASTROENTEROLOGY - BELL's PALSY OF THE GUT
by Virginia T. Sherr, MD 2006
. . . Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians. . . .
. . . Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms--along with numerous other pathogens also contained in tick saliva--influences health and vitality of the gastrointestinal tract from oral cavity to anus. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While not your diagnosis, detail her may be of help (although she is not a lyme expert):
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
You can LOOK INSIDE the book here -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also: some gluten may have slipped past you. Or Diary.
HIDDEN SOURCES OF GLUTEN in the link below. Even a trace can destroy an intestinal tract, at any point.
Avoiding ALL GMO foods and all animals that are fed GMO feed, too, can make a huge difference. I'd sure go gluten-free, diary-free, corn-free, soy-free and GMO-free before letting anyone cut.
It may sound hard but you are likely already gluten and dairy free.
The Non-GMO part can be handled by buying organic or transitional produce (or finding out more about the source and their practices),
avoiding all processed foods and
meats from animals that are free range and pasture fed / organic feed. Eggs, too, from such hens.
WILD FISH, never farmed. Wild Salmon best from the Pacific / Alaska region.
Sardines: Wild Planet brand is clean.
It may cost more at the store and make take some calls to find good sources but it's a lot cheaper than a possible unnecessary surgery.
I've been eating this way for many years and I find it fairly easy. Cutting out processed foods and never eating out saves a lot of work and confusion, actually.
I'm never bored as there are still thousands of real foods from which to choose. Garden herbs and spices add so much flavor and propel satiety (though not spicy hot spices for me, or likely for you, either - many are savory and not hot).
Detail here explains my suggestions. The film, "GMO Roulette" is eye opening. You can see the difference inside the digestive tract between non-GMO food and GMO food. This documentary is well worth the cost. I hope you can order it today.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lots of interesting hits from a Google search of:
YOGA for gastroparesis
(also cross search with the exact name of your gut diagnoses - then search for local teachers).
Of course, be sure any web advice is from a certified instuctor or any blog advice is taken with caution and further exploration. Often a blog entry can be a huge help. Just good to be sure, though.
You may be able to find a local yoga instructor who has extra certificition for gut techniques. Best to learn in person. An instructor will watch for so many aspects of how you do this to be sure you learn it correctly.
Never force yoga. Forget "power yoga" or overly enthusiastic tutors. "Hot" (Bikram) yoga is not a good idea for most with lyme due to heat intolerance.
Yoga should always be GENTLE and move slowly from one pose to the next - sometimes it may be 10 minutes just to move from one pose to the next.
Done wrong, (I won't call it "yoga" then - but done wrong - it can cause injury.)
"Restorative" Yoga may be where you'd start a search for a local teacher. Maybe one could come to you for a few sessions.
Likely, anyone who is trained in the UPLEDGER VISCERAL MALIPULATION can also teach you some exercises to do at home. -
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well we have eliminated chron's, celiac, inflammatory bowel, cancer, lactose intolerance, etc. all that's left is ibs and the diverticulitis.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I agree with Keebler and would add to find someone who is qualified in accupuncture. If there are problems with the wiring of the gut, accupuncture can help as well as visceral manipulation. Also, doing movement based excercise--or Qi Gong which is gentle and healing. I'm thinking of an excercise that creates chi or energy. Investigate community colleges or an extension service for classes, or try the internet for this or for Tai Chi.
Posts: 482 | From Oregon | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: exact diagnosis. Quote: "all that's left is ibs and the diverticulitis." (end quote)
I think what I meant early with "diagnosis" is the facts of the case, the actual physical findings (extent of damage and likelihood of any tissue repair).
Not for you to divulge all that but, in addition to the facts, to question if there is any room for other ideas on how to treat, and what caused it.
If surgery is required, then it's required. If that has not yet been determined without a doubt, you have time to seek out other opinions, too.
Even just "IBS" can have many causes, lyme one of them. Some Rx, certain foods, too.
Re: Diary. These kinds of tests don't cover all the bases.
Eliminating "lactose intolerance" is not a get-out-of-jail free card to consume dairy. Please see the reader comments in both NYT / Bittman articles in that link above.
Also to consider (unless you consume ONLY organic dairy, butter / ghee) is the GMO effect. But even organic dairy products can do damage to many.
IMO, though, I think it is absolutely vital to give up all dairy & casein for at least a month and see if that helps. It can't hurt and you may find a wonderful success as others have.
OtterJ's suggestions are also all excellent.
The adjunct, hands-on techniques and movement suggstions have to do with circulation but also relaxing spasms and working out possible internal adhesions that can impair function. -
[ 12-31-2012, 02:55 AM: Message edited by: Keebler ]
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Randi, I thought you were gluten-free.
If not, that is the number one thing to consider first and TuTu is correct in that the ONLY way you can tell is by AVOIDING ALL SOURCES OF GLUTEN for at least a month or two.
Tests can be wrong so don't count on even a stomach biopsy -- a genetic test might be more acurate but, even with lyme, (or some other infections), gluten can cause serious trouble.
Even a trace.
Might as well drop dairy then, too, I think that avenue also holds so much promise.
HIDDEN SOURCES OF GLUTEN - many links in this set:
GMO foods that destroy the GI Tract; Gluten; Dairy. -
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I haven't read everyone's replies....but my reaction would be no way, I would not remove it. What a scary, radical thought. Once it's gone, it's gone. I don't see an upside to it.
I'm not sure of all the things you have done, but I would try to find the best naturopath/alternative/integrative doc out there. I believe with my whole heart you can fix your problems with the right guidance.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
here's what is so strange and has my sister going "wth" also.
after the colonscopy, the gastro told my husband (cause i was half out of it) that everything was fine, i had ibs and had a previous case of diverticulitis. he said he would see me in three weeks before we go on vacation. i did have a polyp which he removed. this was on saturday.
now the next thursday at 7:30 at night his nurse calls and says can you come in tomorrow? and i said what for? she said don't know but he wants to see you, which of course scares me half out of my wit's.
so go in and he says you've had several attacks and they are getting progressively worse. the ibs, if you can deal with it, can be treated with anti-spasmodics or anti-depressants. however, you really should consider having 10 inches of that colon removed and here's a card to see a surgeon and go talk to him.
frankly i'm sitting there stunned. just the previous week he said everything was fine, there was some narrowing and signs of previous attack but he didn't say anything about having colon removed.
now my husband is going, what changed from one week to the next and my sister is freaking out, saying no way. even the ct scan says "mild" diverticulitis and you don't have a portion of the colon removed for "mild" diverticulitis.
but the gastro says i am playing russian roulette and the next time i could end up in the hospital or worse.
course with my lyme brain i have a hard time understanding and making the leap from "see you in three weeks" to "come in tomorrow and let's talk colon removal"...
is there something i'm missing here or what?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My guess is that the doctor did some reading after he did the colonoscopy on you. He educated himself, in other words. Once he did, he saw things differently. He saw that what was going on with you was like playing Russian roulette. Not good!
What he read evidently told him that the narrowed section of the colon could become very dangerous, given your history of having several attacks, each getting progressively worse. He doesn't want something horrible to happen to you and you sue him, so he calls you in to tell you that the safest thing for you to do is to take out the narrowing portion of the colon. This protects him. He told you.
A narrow portion of the colon could cause a total intestinal blockage if that portion became inflammed and swollen. That is a medical emergency and would require surgery. A friend of mine had that happen at her first episode of diverticulitis. It wasn't pretty. She had to have surgery. Her colon was so swollen at one spot that the hospital thought it was cancer! That gave us all a scare.
Also, 10 inches of colon is not "colon removal" by any means. The colon is at least 6 feet long. So, 10 inches is a small portion to have removed. You would not notice the difference.
Why not do some reading on your own. Look up diverticulitits and narrowing of colon, etc.
What he said makes sense to me. Getting a number of attacks that are progressively worse doesn't sound like "mild diverticultis" to me. People can die from diverticulitis. It is not to be treated lightly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My doctor's sister nearly died from the kind of situtation TF described.
IMO, there are many things that are best pursued (things I've mentioned above about food choices and physical visceral massage) WHILE you find out more about the facts of your case.
Ask to see the pictures from your procedures. That should help explain a lot. Likely, the video is on a disc. He may even be able to send key video clips to your computer.
As you study the diveticulitis sites and find out more about the condition itself, there you may also search about (. . . well, I forgot what I was going to say . . . but I was glad it came to mind when it did, just too bad it flew away).
Oh . . . find out what other kinds of imagining tests may be of help. But, in the colonoscopy, they were right in there. They could see and experience it with the tube going through.
I think TF is correct in that, right after the procedure, you were not awake enough nor did he have all the detail.
Even aside from the physical findings, though, diet changes are vital. I can't believe they've not suggested being both gluten-free and dairy-free. I'm not sure at this point if that can correct everything and if there is time to see about that but, from here on, diet changes might well safe the rest of your gut highway. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Randiebear, All of these antibiotic pills we take destroyes the good bacteria of the colon. These bacteria cause the colon to be slick inside,moving things along.
Try taking glutamine powder it heals the colon.
Tincup told me about it and it works.
Please contact tincup and ask her about it,she will know how much to take.
MADDOG
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