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Stephen's update and transfer

Farmwife

Farmwife

Well I hate to tell you this but in my life hardships come in three's.
Crazy I know, but three is the magic number of misery for my family.:frown:

So sorry that your dad has to go though this. Is it just your mom and you to help with dad or are there more?

My family pet is still my favorite. Still remember her and tear up from time to time when I think of her. Yes I use to have a heart for animals. Poor kids. Poor hubby and you!

I hope all goes better!:heart:
 
Sascot

Sascot

You poor thing! What a truly awful time you are having. I agree - surely nothing else could go wrong now - you have had enough now!
I hope the antibiotics work this time and stop your dad's infection. Sorry to hear about your dog, a sad time for your family!
 
M

momoftwinboys

So sorry to hear what your family is dealing with.
I can not stop the downpour...but am happy to offer an umbrella to protect you and your family.
 
upsetmom

upsetmom

Location
,
OMG you have been through so much......:hug::hug::hug:

I hope things start improving with your dad.

Sorry to hear about your dog.
 
C

crohnsinct

Well-known member
OH TESS! I am so sorry about your dog! I am a fellow dog lover and have had dogs cross Rainbow's Bridge and know how hard it is. What an awful time you are having of it. I pray that your dad is now in a hospital that will care for him and treat your mother with the respect she deserves and that the decisions come easy for you all.
 
Tesscorm

Tesscorm

Moderator
Staff member
Thanks everyone! :ghug: I truly hope we have reached bottom now and things will begin to improve.

Hopefully, my dad will respond to the mess quickly. At least having him admitted will give my mom a bit of time to prepare for his return home; Fridays discharge was completely unexpected and obviously wrong! He is back at the same hospital, as we believed that the fever was inresponse to the infection and it was middle of the night, my mom just wanted to return to where they had a record of all that had occurred. They have temprarily put him in the exact same area he was in when they discharged him - I think it is giving my mom a bit of satisfaction that she can say 'I told you so!' after the way they treated her Thurs evening when we kept insisting he was NOT medically stable. :voodoo:

Farmwife - I have a brother so he and my SIL have been helping as well

Seems strangely quiet at home without our dog :( but, the kids have had busy schedules today so that has helped. Our dog was 10 years and that is generally the lifespan for this breed of dog. Unfortunately, it's part of the package when you have a pet. :(

But thanks again everyone... Feel like I've been coming in lots lately taking away the support and hunt been able to put much back! :ghug: :ghug:
 
Farmwife

Farmwife

Translation please- SIL?

My child hood dog was 15 yrs old.:frown: I cried and asked why we couldn't down my lil sister since she was only 12. It only seemed far at the time.;)
 
C

crohnsinct

Well-known member
Um...duh...SIL means Sister In Law in the states also...maybe you didn't get the memo way out there in the country yet.
 
Farmwife

Farmwife

How did you now that!!!!:ywow:

I made it up!!!!:ywow:

I'm going to bed you witch!:ywow:

Are you like for real???:ywow:
 
Twiggy930

Twiggy930

Location
Canada
Just catching up on this thread now... Awwww Tess I'm so sorry to hear that things have been so rough lately. Sending you a big ((((hug))))


:hang:
 
DustyKat

DustyKat

Super Moderator
Oh my goodness Tess...:hug::hug::hug::hug::hug::hug:

What an difficult and heartbreaking time for you and your family. :(

I hope you Dad will be okay this time and they are able to save his toe. I also hope they ensure he is well on the way to recovery before discharging him.

I am so sorry to hear of the loss of your beloved dog. We surely do become attachéd to our pets and feel their loss so very keenly when they do pass on.

Sending loads of love, luck and healing thoughts your way hun...



Dusty. xxx
 
Tesscorm

Tesscorm

Moderator
Staff member
Finally a little bit of good news! :) It's so little that it's silly to be so 'happy' about it :lol: BUT it's something that's NOT bad news!

Stephen's GP repeated all the blood work that was done a month ago... haven't gotten a copy of the results yet but a few of the results are:

CRP 6.5!!!!! The last time it was this low was June 2011, at week 5 of exclusive EN. It was 11 last month and 27 four months ago!!

ESR still high at 34, only down by 1 from last month. :(

HGB same at 131 (shud be min 140) but, it's not going down... this is pretty much the highest its been since I started keeping track of all his results (Apr 2011)

And, ALT and AST, which were worrying me as they'd recently doubled! At normal range!!!! for the first time since April 2011!!!


SHUSH!!! No one remind me of what I know about blood results!!! :lol:) I know the MRE still showed inflammation but, the fact that his CRP level last month was NOT a one-time fluke, makes me feel a bit better about going the LDN route...

Now if only the GI would call!!!!!!!!!!! Spoke with his assistant yesterday, she said he'd said he was reviewing Stephen's info/results over the weekend and would call... didn't yesterday though! :ymad:

(Nothing really new with my dad other than slight improvements...)
 
A

awmom

Tess, it sounds like things are improving for Stephen!! I hope the rest of the results are good....seems he is on the right track. You sure have been through a rough spell....life tends to though us some curve balls, but when it throws THREE it's so hard to give each the attention they each need. I'm sorry about your pup....they are truly a part of the family and it's so sad they can't grow old alongside of us. I hope your dad is improving...I know it's painful to see our parents hit rough times also. I send warm thoughts and hope things start looking up on all fronts!
 
Farmwife

Farmwife

Tesscorm said:
SHUSH!!! No one remind me of what I know about blood results!!! :lol:) QUOTE]



I'm right there with you sister. :hug: In my bubble the labs always tell the truth!:rof:


It's a contest to see who's GI calls first.:voodoo:
I have a feeling you'll win.:voodoo:
Click to expand...
 
Tesscorm

Tesscorm

Moderator
Staff member
Even more good news! :banana: Just spoke with my mom and she said my dad, confusion-wise, is almost back to the way he was before getting sick! Said they were having normal conversations and he knew everything that was going on now, before, etc. and foot is beginning to look better! Hopefully, we're turning the corner!

Wish I could hope for something positive re our dog but... :( but we all know it's an outcome that every pet owner will face. It could have been worse... she wasn't sick, didn't suffer, etc. And, where my husband walked her, off leash, she'd go running into a very large forest sometimes for 10-15 minutes before she'd come running out... if it had happened in the forest, we may never have found her and would have been left never knowing if she'd gotten lost, had been hurt, etc.; because the heart attack was so unexpected, it wouldn't have crossed our minds. So, if it had to happen, I suppose it happened in the least worst way.

Now, if the GI will just call... I would actually start to see the :sun: Farmwife - I hope we both get these calls TODAY!!!!!!!!!!
 
Farmwife

Farmwife

Glad to hear about your dad.

As far as dogs, we adopted an abused dog. Not only was she mistreated by her owners but the other dogs picked on her also. We got and loved her and she came to trust us. Got up one morning and she was lying in the way and I nudged her with my foot and said baby time to move, she didn't. She died in the middle of the night and my other dog was cuddled up next to her and didn't even know her new sister had died. We only had her for a year. Plus it was Grace's dog. Yep a sad day indeed. Hugs to you!

BTW in the mourning of your old dog do not go buy a new dog! Trust me. You'll wind up with a 90 pound puppy that drives you crazy!!!!!! She's still my puppy but what a PAIN!
 
C

crohnsinct

Well-known member
Thata girl Tess! There are blessings in every situation. Sometimes small and we have to look harder but they are there. Lost pets are the worst. I lost a cats twice. Searched for months. Followed every lead and nothing. One was found dead in a neighbors barn and the guilt over not looking hard enough, or wondering if she heard us calling and just couldn't come consumed us. The other was found months later when we opened our pool for the summer. Just awful!

I am so glad your dad is doing better!

Now...missing GI's on the other hand...did you put up posters around town?
 
Tesscorm

Tesscorm

Moderator
Staff member
BTW in the mourning of your old dog do not go buy a new dog!
Click to expand...
We may actually end up with TWO puppies!! My husband wants a hunting dog (English Pointer) that he can train and enter into competitions, etc. - a manly sport :puke_r: :lol: But, my question to him is 'what is the point of having a dog that won't be with me when he's away pointing and hunting??? If I'm all alone in the dark, lonely house... may have to pull out that merlot and call the big, strong fireman/rescuer when I get spooked! :lol: I'm thinking he'd be better to buy me a new doberman!

missing GI's on the other hand...did you put up posters around town?
Click to expand...
Too funny!! :rof: Maybe I'll start with sending the poster to his assistant by email!
 
Sascot

Sascot

:rof: No puppies here - my kids still haven't forgotten the one we had for 4 days :ybatty:.
Glad your dad is feeling a bit better and those blood results sound pretty decent! Hope the GI calls soon!!
 
C

crohnsinct

Well-known member
Haha we bought a chihuahua for Olivia and it got sick two days later. WEnt into doggie ICU and $5,000 later passed. Hubby was O.K.'ing all kinds of treatments. Drugs that could cause blindness, kidney failure blah blah blah. I told him, "that's it! You are no longer in charge of my care if I am not able to make my own decisions...if you do that for a dog that we only had two days what will you put me through"...he said, "I've had you longer...don't worry"
 
Farmwife

Farmwife

crohnsinct said:
Haha we bought a chihuahua for Olivia and it got sick two days later. WEnt into doggie ICU and $5,000 later passed. Hubby was O.K.'ing all kinds of treatments. Drugs that could cause blindness, kidney failure blah blah blah. I told him, "that's it! You are no longer in charge of my care if I am not able to make my own decisions...if you do that for a dog that we only had two days what will you put me through"...he said, "I've had you longer...don't worry"
Click to expand...


:rof::rof::rof:To funny:rof::rof::rof:
 
Farmwife

Farmwife

It's like the old joke.

The wife looks ant the husband and says, if you could only save one person from drowning, who would you save, me or hunting dog that took years to train?
The hubby thought about and said the dog of course. Wives are easier to train.:voodoo::rof::voodoo:
 
Tesscorm

Tesscorm

Moderator
Staff member
:lol:

Heard another one... If you really want to know who loves you more, lock your wife and dog in the trunk of your car. Come back in an hour and see who's happiest to see you!
 
Farmwife

Farmwife

Here's another one.

Hubby looks at wife and says you don't love me as much as this dog.:(
Look at how she licks me on the face with love.
Wife looks up from her book and smiles and says I do love you more than that dog.:hug:
Hubby says prove it and puckers up for a kiss.:kiss:
Wife looks back at her book and says, I don't eat my own poo before I kiss you!:eek2::rof::eek2:
 
Tesscorm

Tesscorm

Moderator
Staff member
WTF!!!!???? No phone call again! What is it with these GIs??? I really just don't understand? Are these GIs really so very busy that they can't call their patients? Ugghh!!
 
Sascot

Sascot

I hope the GI calls! Maybe if we all send enough positive thoughts - he will phone quicker :ylol:
My mom just got taken into hospital this morning - there went my plans for the day! They have admitted her for a couple days for tests. :yfrown:
 
Tesscorm

Tesscorm

Moderator
Staff member
Sascot - i posted on your thread... but, good luck again with your mom! I hope all turns out to be okay! :ghug:
 
DustyKat

DustyKat

Super Moderator
Hey Tess,

Sooooooooooo good to hear that things are going well with Stephen, bless him, and you too! I hope more than anything that this all bodes well for him. :)

And your Dad too! Sending loads of luck and love that he is well on the way to a full recovery. :hug:

Have you heard anything from the GI Tess?

Dusty. xxx
 
Farmwife

Farmwife

Ok, my rolling pin is ready! :ywow:Give me an address and we'll be there.

Then y'all will head to Grace's GI and help me there. :thumright:
Grace has bad canker sores now. Not eating much. Poor kid.:frown:
Of course the pies, cookies and cakes will be easy for her to eat!:biggrin:
 
my little penguin

my little penguin

Moderator
Staff member
Take pics of the mouth sores.
I tend to email DS's Gi with photos all the time.
Tess-
Lots of baking today so rolling pin is ready.
 
Tesscorm

Tesscorm

Moderator
Staff member
Gosh, we've had our Thanksgiving already but you all, with all your talk of baking, are making me feel very deprived way up here!!! :lol:
 
my little penguin

my little penguin

Moderator
Staff member
Just finished the bagels fresh from the oven-
Not very
Thanksgiving like but only safe way for DS to eat them due to food allergies.
Pumpkin and apple pie are next on my list.
 
my little penguin

my little penguin

Moderator
Staff member
Neither it is my mommy guilt day.:tongue:
DS only has pie or bagels etc if I make them from scratch so....
The only day I have any time is holidays since I work.
So lots of mommy guilt.
You could ask your dear son to pick up a pie at the store so you get all the goodies with none of the work.
Plus it frees your rolling pin for the Gi:ylol2:
 
Tesscorm

Tesscorm

Moderator
Staff member
Good idea MLP - aside from co-op, Stephen's only course this semester is Food & Nutrition and they recently made an Apple Cobbler! Hmmm... very Thanksgiving-ish! Perhaps I should suggest he BAKE one this weekend! :lol:
 
my little penguin

my little penguin

Moderator
Staff member
Now your thinking ...
We use cooking as therapy for DS.
At nine he can bake a cake, bread, bagels and make homemade ice cream.
Pounding dough gets out the "mad" about the diseaes plus it tastes good.
 
Tesscorm

Tesscorm

Moderator
Staff member
Wow, I'm impressed! :thumright:

Stephen's never been the most coordinated kid around (except in hockey! :lol:) I was quite proud when he mastered toast at 16! :medal1: So, while not something I ever thought I'd say, I was quite happy when he changed his course this year from an extra English Lit credit to Food and Nutrition! :lol:

But, in all honesty, I've been really impressed and think this is a great course for him... they not only learn basic cooking skills but are learning about vitamin/minerals and the roles they play in your health! Important for everyone to know but, especially so if you have a lifelong illness!
 
Tesscorm

Tesscorm

Moderator
Staff member
FINALLY... we have a plan with the GI... still a bit more delay BUT... he'd like to meet again before beginning on any treatment plan (LDN or remicade), we have an apptmt for Dec. 11 and he will try to have MREs reviewed by then! :thumright:
 
DustyKat

DustyKat

Super Moderator
Woohoo! Roll on 11/12! :poop::poop::poop:

Just a couple of things to mull over Tess cause you don't have enough on your mind already! :hug: and because I am so I want company!

Do you think a course of Budesonide might be an idea to be thrown into the mix at some point?

Has Stephen's bone/back pain issues ever been fully investigated in light of his Crohn's? I just wonder if his elevated ESR may have another cause aside from bowel inflammation.

Remember! Just my musings! :)

Dusty. xxx
 
Tesscorm

Tesscorm

Moderator
Staff member
:lol: Ahhh, I have been strolling along the entocort path!!! :whistleinnocently:

I've done a little of reading :study: and, as far as I can see, entocort does work in the small bowel and has fewer symptoms then pred. So, I was wondering if a short course of Entocort could reduce the inflammation that's indicated in the MRE???

As far as his back, I flip-flop as to whether I think it's related or not??? Months, months, prior to his diagnosis, he did have a back injury from sports... did physio. GP believed the pain continued to return because of hockey twists, hits, etc., she identified the muscles that she could feel were tight and recommended massage/physio (and, unfortunately, ibuprofen :(). When he was diagnosed, the GI sent him to a rheumi due to his back pain; x-rays were done and he was checked by the rheumi and they found no problems. But, it is coincidental that most of his back pain has gone away since he started EN. He still has random days of back pain but they are relatively few (1-2 days a month, sometimes lasting a day, sometimes less, more, etc.). Tiger Balm always brought him relief and he finds that massage, physio and yoga loosen up his mucles and help quite a bit. I don't know what else can be checked re his back??? No one (GP, rheumi, masseur, physio therapist) ever found anything more than 'tight muscles':shifty-t:

I still use backpain complaints as an 'alert' to watch for GI symptoms but, I haven't seen a really strong correlation since EN.

But, even if back inflammation (even if unrelated to crohns) were causing his CRP and ESR to be raised, his MRE does show intestinal inflammation. (Which is now confusing me as his CRP continues to drop! :yrolleyes:)
 
DustyKat

DustyKat

Super Moderator
Ah okay on the back pain side of things. :)

I always found CRP to be a bit of an enigma with Matt. When he was at his worst it certainly did reflect how he was travelling. As he stabilised it did continue to reflect that he had issues present but it fluctuated quite considerably and I probably saw that because he was having bloods drawn weekly for some time. It would be down one week only to see it rise the following week. Near drove me insane! Or it did it! :lol:

My thoughts exactly about the Budesonide. Might just do the trick at nipping what inflammation is there in the bud. It does work well in the small bowel and yes, with far less systemic effects than Pred as it is designed to work topically.

Dusty. xxx
 
Tesscorm

Tesscorm

Moderator
Staff member
Yes, Stephen's CRP has fluctuated quite a bit... was well over 100 when he was diagnosed and then down to 6.8 when on exclusive EN. Since then, it has fluctuated between 17-31; October's and this month's results were the lowest since exclusive EN.

I'd love to have them checked once more before the Dec. 11 apptmt but I think I'm embarrassed :redface: to ask as his GP might really begin to think I'm a neurotic PITA mom! :lol: (Don't even want to imagine what the new GI, poor guy:eek:, thinks of me! Since the first apptmt in mid-October, I've been to his office twice to drop off MRE files, have had a U.S. imaging centre fax him results, have had his GP fax him blood results and have called/emailed his ass't at least 4-5 times regarding his return phone call! :lol: No chance of 'outta sight, outta mind' here! :lol:)
 
Catherine

Catherine

Moderator
Tess, you at mother wanting to be sure all the facts are in before very important decisions are made. This is completely understandable.
 
Sascot

Sascot

Glad you have a date to meet with the GI - not too long away. Glad our rolling pins weren't needed - don't know if I have enough time to nip over inbetween hospital appointments and visiting hours :ylol:
 
Tesscorm

Tesscorm

Moderator
Staff member
Catharine, That's exactly how I look at it... it just makes sense to me, more efficient, productive, etc. but, it doesn't seem to be the way the medical system works :ywow: Everything always seems to be slightly out of step...

-First, let's make drastic changes/decisions based on results from 6-12 months ago...
-I get new, updated results from the U.S. within 2 weeks...
-then have to wait for follow-up in 3 months'

Doesn't this just take us back, fairly close, to square 1??? :yfaint:



(I think this could be leading us into another 'medical system' discussion... ;))


Whew - no rollings pins needed!
 
DustyKat

DustyKat

Super Moderator
Tesscorm said:
.I'd love to have them checked once more before the Dec. 11 apptmt but I think I'm embarrassed :redface: to ask as his GP might really begin to think I'm a neurotic PITA mom! :lol: (Don't even want to imagine what the new GI, poor guy:eek:, thinks of me! Since the first apptmt in mid-October, I've been to his office twice to drop off MRE files, have had a U.S. imaging centre fax him results, have had his GP fax him blood results and have called/emailed his ass't at least 4-5 times regarding his return phone call! :lol: No chance of 'outta sight, outta mind' here! :lol:)
Click to expand...
That's what Mum's do isn't it, especially IBD one's??? :lol:

Ah hell Tess ask away! You can act all innocent and say before his consult you want the most up to date test results made available to you because some major treatment decisions need to be made. If they get snarky start crying...:shifty-t:

Dusty. :)
 
Clash

Clash

Sounds like everything is coming together! I'm with Dusty, I would ask away, if they get smart play the upset worried Mom whose baby will soon be own his on bit!
 
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kimmidwife

kimmidwife

Tess,
Keep it up! The more you push hopefully the sooner they will get you in. It is ridiculous that they are putting off so long to see him when he has active disease and needs to be stabilized.
 
Catherine

Catherine

Moderator
Everything does seem to be moving slow for Stephen, it make our 3 Weeks to come to the decision to make no change seem quick.

These holding patterns are really hard on the family.
 
Tesscorm

Tesscorm

Moderator
Staff member
I know!! :ymad: Imagine if I wasn't constantly pushing! I don't know what it is... if our medical system is severely underfunded, if it's been the timing that Stephen's ped GI knew transfer was imminent so hesitated to start him on anything as he has been 'stable', if it's simply been bad luck in the scheduling of GI we now have (ie the wait to see him and now...)...

At the same time, my 'learning curve' took time as well so for many months, I didn't push or question his ped GI because I simply had no questions - he told me it was fine so I didn't question every result, every number, etc.... by the time I was questioning, his transfer was even more imminent...

But I really don't know how I could have moved things along any quicker... :ymad:
 
Farmwife

Farmwife

Hind sight is always 20/20.

I so wish I would have known then, what I know now.

Hugs to you. :ghug:
Your doing a great job mom.
 
Tesscorm

Tesscorm

Moderator
Staff member
I have a question re Flagyl... It doesn't seem that Flagyl is commonly used to reduce inflammation. When Stephen was admitted, his CRP was 136, after a week of IV Flagyl (before starting EN), his CRP was 4.

Is there a reason why Flagyl isn't used more often to bring down inflammation?
 
kimmidwife

kimmidwife

Flagyl does seem to be commonly used by some doctors but not by others. When we took caitlyn for her second opinion in New York when she first got sick that doctor immediately out her on flagyl while our doctor ( the one we fired) never mentioned it.
 
Sascot

Sascot

I'm not really sure. Andrew was only put on the Flagyl to try get rid of the abscess he had, but never seems to be used for the Crohn's itself. I know what you mean about pushing - I pushed and pushed with Amy and it still took weeks to get anything done.
 
kiny

kiny

Well-known member
Tesscorm said:
Is there a reason why Flagyl isn't used more often to bring down inflammation?
Click to expand...
There's more than one reason imo.

-it's cheap, doctors get money to push expensive drugs all the time, flagyl isn't one of them

-there's the issue of resistance, the more resistant bacterial strains become the more risk for an eventual superbug once more and more people get infected with it and more and more antibiotics are use (I don't care about that personally, I will not risk my own life to save a life 10 years from now)

-there's the controversy of what crohn is, for some researchers it is an uncontrolled immune response, for others the AIEC bacteria and other bugs they find are the cause of the inflammation, if you believe the former then flagyl would do nothing

-there's the issue that flagyl is not macrophage penetrating, AIEC is macrophage penetrating, so the effect of flagyl is less than something like cipro and clarithromicyn and other types of macrophage penetrating antibiotics

-there's the issue that flagyl itself will create resistance for other antibiotics down the line, you could argue if it's smart to use flagyl which isn't as effective as other antibiotics. while flagyl carries less risks than other antibiotics, if you're giving it and it has no effect, you're basically screwing yourself over for stronger antibiotics down the line, the effect of flagyl will lessen the effect against AIEC when you use other antibiotics down the line as shown in studies

-antibiotics unbalance the gut flora, which isn't a good aspect of flagyl, flagyl is not selective, to even create AIEC colonisation to begin with in rats they need to use antibiotics, antibiotics are a double edged sword in the gut, on the one hand you might be killing some pathogens, you are killing good bacteria that can stop the spread of pathogens in the gut lining and they help keep PH low which limits AIEC spread

to sum it up: money, difference of opinion on causality, resistance, affects gut flora
 
upsetmom

upsetmom

Location
,
Tess not sure why its not used there .....our DR told us any flare would be treated with flagyl and if that didn't work on its own he would throw in another antibiotic ....they don't like to use streroids
 
kiny

kiny

Well-known member
I should add another reason really.

-about 10 years ago, is when they used more antibiotics than they did now, since they had less drugs specific for crohn, those tests were not negative, but also not really positive

but, there were many issues with those tests, many of the tests used non-macrophage penetrating antibiotics, many used incredibly low doses, many stopped too soon, many built up the dose too slow which leads to resistance, they didn't use probiotics which leaves the mucosa vulnerable to colonisation, etc

basically antibiotics were discarted at that point, they argued that if it were bacteria, antibiotics should have helped

so, now, with much better tech available, they are discovering AIEC and other bugs, and they realise they're not normal bugs, they're macrophage penetrating, AIEC replicate inside macrophages, they're intracellular and if the antibiotic is not macrophage penetrating, it might not work very well against macrophage penetrating bacteria (it doesn't mean it's useless, flagyl has some, effect against some strains in limited numbers). What it does mean is that they can point to those old studies and explain why they're flawed.

That doesn't mean that antibiotics now suddenly would work, it just means, that people shouldn't base their facts on old studies done 10 years ago, because there are plenty of reasons that can explain why they failed outside of concluding that crohn is not related to specific strains of pathogenic bacteria.

10 years ago they tried antibiotics for crohn, and it didn't help enough, they concluded antibiotics didn't help for crohn, without knowing which bacteria they were targeting, with many flawed studies, without knowing the bacteria are macrophage penetrating (trojan horses if often used, they infitrate a magrophage and exploit it). When doctors say that antibiotics don't work for crohn, many base their opinion on those studies done long ago, which shouldn't be happening but it does.

(I'm not saying antibiotics work or even work for everyone, I'm just saying, many doctors don't have the right facts in front of them)
 
kiny

kiny

Well-known member
Here is an actual picture of LF82, one of the AIEC strains found in crohn's disease patients (there are some more, but LF82 is the most common one)

AIEC stands for Adherrent Invasive E Coli.

Adherrent refers to their ability to adhere to enterocyte cell.
Invasive refers to the ability to invade the intestinal wall (flagella).

They can form biofilms which allows them to stick together and they find them in the barrier on the gut wall of crohn's disease patients.

If you don't believe in them...even though they're there but ok.....then you don't believe in antibiotics. Some argue they're not the main cause of the inflammation (even though they often find the skip lesions at the place of LF82). What I do think is that maybe not everyone has them.



So when you ask why some don't give antibiotics, one of the reasons is that the opinion on crohn's causality can differ from one person to the next.
 
C

crohnsinct

Well-known member
FW=Fraud! Yes I caught that buying pies comment!

Tess: I thought of you as I ate my pumpkin pie, chocolate peanut butter pie, Tiramisu and chocolate whoppie pies with vanilla coconut creme! And you go ahead and ask for those tests. You have a big decision to make and I think the more info and the more current the info the better!

MLP: mommy guilt? I know all about that but gee whiz you are an awesome mom no guilt about that!
 
Farmwife

Farmwife

crohnsinct
How dare you talk to a monitor like that. I out rank you crohnsinct!
I don't even now if I'm in the right forum, but hey here I am more accomplished than YOU.:rof::rof:
 
Catherine

Catherine

Moderator
This forum is great because the so many great parents looking at what we say and would pick up mistakes or poor advice quickly.

But aza/6mp forum I find i'm much more concerned about what I say. I seem to saying a lot the regular blood testing is very important with med. It almost like I need make a list of answers from the posts I have received from this forum.

Maybe this monitor thing is good because I thinking I need tio write out some notes.
 
Tesscorm

Tesscorm

Moderator
Staff member
Kiny, thanks for all that info!!! All new info for me, so am trying to really get a grasp on it...

First, cipro is not an option for Stephen as he had an allergic reaction when he took it.

My question... From Stephens blood results, he did respond positively when he was treated with flagyl. But, if it is a bacteria, why wouldn't have been killed off with the flagyl? As his results were good, the flagyl did 'something', so if I assume the 'something' was that it killed the bacteria, why has the inflammation returned? Do you believe the flagyl didn't kill it all? Or that the bacteria was reintroduced to his system?


Crohnsinct - chocolate peanut butter pie! :eek: sounds amazing!
 
my little penguin

my little penguin

Moderator
Staff member
Tess the problem is there are probably about 4 or more subtypes of ibd
According to current thought . Experts are still working out how to classify them.
Sometimes respond well to abx . Some to diet . Some need immunosuppressants .
But they haven figured out which is which for an individual yet so....
They still treat one size fits most.
Crohn's is chronic so killing bacteria does not cure the disease.
The cyclic keeps repeating.
Flaygl can cause many side effects including numbness in the limbs
When used long term.
 
my little penguin

my little penguin

Moderator
Staff member
http://www.ccfa.org/resources/antibiotics.html


Antibiotics are frequently used as a primary treatment approach in IBD, even though no specific infectious agent has been identified as the cause of these illnesses. However, researchers believe that antibiotics can help control symptoms of IBD by reducing intestinal bacteria and by directly suppressing the intestine's immune system.

Antibiotics are effective as long-term therapy in some people with IBD, particularly Crohn's disease patients who have fistulas (abnormal channels between two loops of intestine, or between the intestine and another structure—such as the skin) or recurrent abscesses (pockets of pus) near their anus. Patients whose active disease is successfully treated with antibiotics may be kept on these as maintenance therapy as long as the medications remain effective.
Click to expand...
Hope that helps
 
Tesscorm

Tesscorm

Moderator
Staff member
Thanks MLP. I wasn't thinking of using flagyl long term, I was just wondering if it would be an option to take down active inflammation (similar to the use of steroids). It crossed my mind when I was looking at Stephens past results and realized that there had been such a drastic reduction in his crp when using flagyl alone that first week. Now that was flagyl thru IV, not sure if flagyl in pill form would have the same positive impact nor whether it could have a negative impact as 'pills' could have an impact on intestinal flora???
 
kiny

kiny

Well-known member
Tesscorm said:
Kiny, thanks for all that info!!! All new info for me, so am trying to really get a grasp on it...

First, cipro is not an option for Stephen as he had an allergic reaction when he took it.

My question... From Stephens blood results, he did respond positively when he was treated with flagyl. But, if it is a bacteria, why wouldn't have been killed off with the flagyl? As his results were good, the flagyl did 'something', so if I assume the 'something' was that it killed the bacteria, why has the inflammation returned? Do you believe the flagyl didn't kill it all? Or that the bacteria was reintroduced to his system?


Crohnsinct - chocolate peanut butter pie! :eek: sounds amazing!
Click to expand...
If the bacteria is AIEC or MAP or any other, then it's extremely hard to kill them all, they're intracellular, they are present inside macrophages and since flagyl doesn't penetrate them (cipro and some others can) they would persist. Another issue is the time it takes them to reproduce, if they're slow growing bacteria they're hard to kill, they are the most vulnerable when they're splitting.

Another issue is the biofilms, if you've ever put your hand in a drainpipe or something similar, and seen how goo sticks together, that's how bacteria stick together, they form biofilms to avoid getting killed by your own gut flora and antibiotics.

Another possible reason is the flagella AIEC use to penetrate deep into the gut barrier, they're long flagella that they use to penetrate deep beyond where the gut flora is, they're hard to destroy there by antibiotics.

There's many reasons why flagyl could work but not be able to induce remission or cure for that matter.


There's another way antibiotics could work, which is when they're referred to as "broad spectrum", if the gut flora is responsible for the increase of inflammation then limiting gut flora to places of lesion would limit inflammation. They see this when some people had surgery, if the bacterial load is decreased, regardless of bacteria, if the load is decreased in general, healing accelerates. But I don't think that's what going on when normal people take flagyl, but it's possible.
 
X

xmdmom

Tess, earlier you asked why flagyl isn't used more often. Kiny gave some answers. In addition according to the online prescribing info (2010), Crohn's disease is not an approved indication for its use. Toxicity is also an issue since Flagyl has the potential to cause peripheral neuropathy and seizures, frequently causes gi upset, and has been found to be carcinogenic in rats. Finally, the efficacy of flagyl appears to be limited (from what I found on UpToDate Literature Review of Antibiotics and Crohn's. http://www.uptodate.com/contents/antibiotics-for-treatment-of-inflammatory-bowel-diseases ) as delineated below.

-flagyl has "modest" benefit for Acute luminal Crohn's in the colon but not in the small intestine.

-flagyl is a first line therapy of uncomplicated perianal fistula following drainage of associated abscesses.

-short-term flagyl may have "modest" benefits in preventing postoperative recurrence in patients with ileocolonic anastomosis.

-----
 
Tesscorm

Tesscorm

Moderator
Staff member
Thanks MLP, kiny, xmdmom! All this info is really helpful! It really is so amazing to be able to ask a question and get so much useful info and advice!! :worthy:

:)
 
Crohn's Mom

Crohn's Mom

Moderator
Oh Tess...you really have been riding that rollercoaster :(
It's time to jump off !!

Big hugs ~ I'm always following your thread and thinking of you!
xoxoxo
 
DustyKat

DustyKat

Super Moderator
I have found Flagyl to be prescribed as front line treatment, in our case with Pred, here and since upsetmom has had that same experience it might be a common protocol, well in NSW.

The other thing to remember with Flagyl is it also has anti inflammatory properties.

Matt was on long term antibiotic therapy:

Flagyl and Augmentin Duo Forte for 3 months prior to surgery. Matt had a psoas abscess and a pigtail drain insitu for those 3 months.

Then Flagyl was continued at half the dose for 3 months post op. The Crohn's specialist he saw was one that subscribed to the point of view that research indicated 3 months of post op Flagyl increased the chances of gaining and maintaining remission for a longer period of time. Since Matt did not experience side effects to the drug I had no objection to it.

Now has it indeed provided this positive outcome for Matt? I don't know because:

Sarah - Diagnosed on the operating table. Bowel an absolute train wreck and she came very close to dying. 68cm of bowel resected. Usual antibiotic therapy post op in hospital plus extra due to peritonitis. Nothing once discharged and has been in remission for six and half years.

Matt - Planned op. 28cm of bowel removed. Usual post op antibiotic therapy in hospital followed by his 3 months of oral Flagyl once home. Been in remission for 18 months.

Dusty. xxx
 
Crohn's Mom

Crohn's Mom

Moderator
Just checking in here Tess to say thinking of you and your family, and I sincerely hope you are holding up ok !

:hug::hug::hug:
 
Farmwife

Farmwife

Oh, oh, me snack lady of my town!:dance:

How does cherry turn overs:dance:, home-made pretzel:dance:, triple chocolate decker cake:dance:, home-made caramels:dance: and last but not least elephant ears.:dance:

I'll bring my own fruit punch!:)
 
C

crohnsinct

Well-known member
Where am I? I am here waiting for you guys! Getting our girl nice and cozy with her Merlot!

Oh yeah Farmwife you will probably BUY all that stuff...we are on to you. You probably don't even live on a farm!
 
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