Scar tissue

[bmeat]

scar tissue

hi everyone. after many years of bbattling a crohns/colitis flare, i have finally achieved remission with the help of remicade. i am now off my remicade, off my asacol, off my prednisone, off my c.diff medication (flagyl, vancomycin) beat my hospital acquired mrsa that was in my blood (with some more dreaded antibotics that were giving me redman all over my body).

i have stopped all medication and only take a probiotic called vsl#3

i had lots of damage in my large intestine, rectum, descending colon, transverse colon. it makes me sad because i am only 20.

the issue im having right now is about scar tissue. becuase the remicade healed me so quickly, i have lots of scar tissue in large intestine. becuase of this whenever i lay down, espeically on my left side i hear and feel loud noises all night long. i was wondering (and praying) does scar tissue dissipate over time? will these loud non-stop noises ever go away? if yes, is there anyway to speed up the dissipation of the scar tissue? any help is appreciated.

i was hoping the noises would stop and were associated with inflmmation, but it has been months since i have been out of the hospital and in remission, and they are still there. they may have gotten a bit less frequent, but im not sure, i havent been trying to pay attention to it. it is very bothersome when im trying to fall asleep

thank you

 

[Manzyb]

Why have you stopped taking all of your medications? I was just wondering. I once was feeling a lot better and stopped taking my medications and was really bad off a couple of months later. That was in my younger days when I thought I could handle the disease on my own.

From what I understand, scar tissue doesn't just go away. I could be wrong, but that is what I have heard. I have a lot of the loud stomach noises as well, I think that might just come with the territory. I don't know how to stop them, but if anyone else does, I'm curious to hear!!

 

[bmeat]

in the past i had my first bad flare. i tested positive for c.diff, went in the hospital for a week, took prednisone and c.diff medication, and was in remission for awhile. i stopped my asacol which was my only medication i was on, and i was still in remission and doing well. then i started to drink these whey protein shakes (which are not fda approved), and my disease returned. i will never take supplements again, the powder comes from china and is probably infested with bacteria and infection causing organisms.

so it was back to the hospital for me. i tested negative for c.diff, which scared me becuase me and my father swore what i had was c.diff colitis (even though i was diagnosed with crohns, but these things are never set in stone). i have never had any small intestine involvment, just large intestine, with lots and lots of deep ulcers and bleeding, also with a fistula in my sphincter

to me and my dad this sounds like colitits, not crohns.

anyway, i was put on highest dose of prednisone. this time it didnt work. we were scared. was put on remicade after being in hospital for 14 days, getting mrsa, getting another scope, losing 40lbs, basically hell, but thank god remicade worked.

eventually i stopped the remicade, the asacol (which i feel never helped me, only made things worse) and this is where im at now.

i hope what youre saying about the scar tissue isnt true.

again i repeat, i will never drink whey protein or any other supplement again. me and my dad believe this is not a genetic disorder, rather an infection. whether i am more susceptible to the infection through genetics is debateable, but why would my own body attack itself?

 

[bmeat]

i also have a question. is there anyone here with crohns/colitis that DOES NOT have herpes simplex?

herpes is known to cause numerous diseases, from bell's pausy to cold sores ALL which involve inflmmation, and i wouldnt be suprised if it was the cause of something like crohns colitis.

 

[scifi-enthusiast]

The disease itself can cause the herpes like growths on your mouth. This I wouldn't worry about, it's a symptom of the disease. I would say just be glad not to have any ulcers in your mouth, that hurts.

These go away within a week or two. My favorite product to use is carmex, but anything you prefer may work as well.

 

[mnsun]

Not sure if it's substantiated, but I've heard claims that Bromelain and Papain supplements taken on an empty stomach immediately following surgery MIGHT limit or breakdown scar tissue. Not sure, but it probably wouldn't hurt.

Yes, lots of whey supplements have been found to have heavy metals, in particular, and crazy flavorings. Just curious, what brand? NOW brands are SUPPOSED to be GMP certified, but your point on unregulation is true. As far as "supplements" go, I wouldn't go a day without GOOD fish oils and probiotics.

Overall, food/supplement safety legislation is not meant to bring about sane/logical safeguards. Euro guidelines are starting to limit amounts of Vitamin C to ridiculously low amounts, for instance. Also, pharma companies want to corner the market for synthetic fish oils/vitamins and up the price ten fold etc... Know on pharma companies, if they have their way, their vitamin C commercials will probably end with paragraphs of disclaimers how their product causes, in some instances, mild cases of death.:thumbdown:

 

[bmeat]

it has been months since the scar tissue has developed. you guys dont think the scar tissue will go away over time? that is a huge bummer.

also youre right, i do take fish oil, which is a supplement. difference between the the fish oil and the whey is im taking a much smaller amount vs 20 plus grams of the whey, even though i only used to take half the serving size, and only once a day after the gym.

maybe they whey just caused a reaction within my gut? i noticed that both times i was taking the whey protein i had horrible flares.

the brands were musclemilk and optimum nutrition. i also took eas labs whey, which is actually abbot (a pharmaceutical company), but it was still not fda approved. i dont even trust fda approval, why trust something that has less regulation than that? every brand uses the same filtered crap that comes from china and puts their name on it, much like how tv companies buy their panels from the same company and put their name, plastics, warraty build quality etc and thats what you pay more or less for.

another example is how how every drum company buys their drums shells from keller and puts their name on it.

 

[bmeat]

also about the sore i understand, all i have is cold sores, but theyre in my nose and who knows how far back that travel. thats part of my digestive track. have you seen how many inflammatory diseases dreaded herpes has caused? just go on wikipedia and look

its a sore/ulcer. it gets infected, it gathers fluid, it drains, it dries up crusts and bleeds when in contact with skin.

it also goes into remissions and attacks when the immune system is weaker than normal. when we are under stress or are sick. just like crohns or colitis

herpes can attacks things like the central nervous system and causes things as extreme as bells palsy. herpes attacks every part of the body, why not the gut as well in some?

the also have cold sore like things in my nose. whenever i get them and they fill i pop them with a sterile needle and apply lots of peroxide. they dry up and heal quicker this way.

 

[bmeat]

inflmation of the gums cause by herpes

"Gingivostomatitis (also known as primary herpetic gingivostomatitis) is a combination of gingivitis and stomatitis, or an inflammation of the oral mucosa and gingiva.[1] Herpetic gingivostomatitis is often the initial presentation during the first ("primary") herpes simplex infection. It is of greater severity than herpes labialis (cold sores) which is often the subsequent presentations. "Primary herpetic gingivostomatitis is the most common viral infection of the mouth".[2]"


inflmation of external genitals:

"When symptomatic, the typical manifestation of a primary HSV-1 or HSV-2 genital infection is clusters of genital sores consisting of inflamed papules and vesicles on the outer surface of the genitals resembling cold sores"

"Herpetic proctitis (inflammation of the anus and rectum) is common for individuals participating in anal intercourse.[7] After 2–3 weeks, existing lesions progress into ulcers and then crust and heal, although lesions on mucosal surfaces may never form crusts.[7]"

here is one where herpes inflames the brain until the point that parts of it stops working:
http://en.wikipedia.org/wiki/Herpesviral_encephalitis

inflamtion of the esphogaus with "and on rare occasions upper gastrointestinal bleeding as noted in the image above[6] and tracheoesophageal fistula.[7] "

look at the photo, that looks like the ulcers inside my colon. they are just nastier becuase our colon is so nasty, it isnt meant to be open :
http://en.wikipedia.org/wiki/Herpes_esophagitis

there is more but you can see my trend. we keep the sores on our skin realitvly clean so infection doesnt form (cleaning too much is also bad). we cant do this inside our colon were open sores are forming so we ignore it? if we could find a way to keep the sores clean and infection free they would heal quicker.

 

[mnsun]

I am intrigued by the common sensical ring to your theory. However, wouldn't it be easy for doctors to take a biopsy of inflammed tissue and classify it if it's a single virus causing it?

Some doctors are convinced that Crohn's is bacterial in origin and prescribe rifaximin to kill any and all bacteria, good and bad, in the gut. From thereon, I'm not sure how they repopulate the gut. Fecal transplants are becoming the rage; just not sure how effective for crohn's, especially in conjunction to other pharma approaches.

On the whey discussion: yeah, muscle milk is one of the culprits-- http://www.webmd.com/food-recipes/news/20100603/report-protein-drinks-have-unhealthy-metals

Also, though I'm sure you'd already know if your lactose intolerant, maybe that could be a factor, to a degree, with whey. All I know is it's hard not to use whey to get the extra protein crohnies need. I guess there is rice, hemp, pea to name a few. I take an unflavored, no rbst, whey from Jarrow.

 

[bmeat]

I am intrigued by the common sensical ring to your theory. However, wouldn't it be easy for doctors to take a biopsy of inflammed tissue and classify it if it's a single virus causing it?

Some doctors are convinced that Crohn's is bacterial in origin and prescribe rifaximin to kill any and all bacteria, good and bad, in the gut. From thereon, I'm not sure how they repopulate the gut. Fecal transplants are becoming the rage; just not sure how effective for crohn's, especially in conjunction to other pharma approaches.

On the whey discussion: yeah, muscle milk is one of the culprits-- http://www.webmd.com/food-recipes/news/20100603/report-protein-drinks-have-unhealthy-metals

Also, though I'm sure you'd already know if your lactose intolerant, maybe that could be a factor, to a degree, with whey. All I know is it's hard not to use whey to get the extra protein crohnies need. I guess there is rice, hemp, pea to name a few. I take an unflavored, no rbst, whey from Jarrow.

yeah i hear that. ontop of that whey is present in many food items, and i never had a problem with that. ive also had to drink ensure and whatever that other expensive drink is for crohnnies. its all whey or soy based, but its all approved. i heard jarrows is "clean", or so the man claims.

rifaximin? why was it never offered to me? i used flagyl, and it didnt help much, however, when i was taking vanco which also works locally in the gut (and much stronger if im correct) i impoved very quickly, while also on prednisone, to help for the excessive inflmmation that shouldnt be there.

vanco is very epensive and i was lucky enough for my doc to prescribe it to me the first time around becuase i had c.diff. this second time around i was kicking and screaming that i want to try vanco again (becuase i wasnt coming out of flare with pred, LOTS of it too i like like 160 or something iv, asacol, canasa) but she wouldnt prescribe me it. i did however make her give me mutiple c.diff tests, all that turned up negative this time around, so she wouldnt prescribe me it. i asked my parents but they had no power, i was in the hospital under her care.

luckily remicade took me out of flare without any gut antibiotics, i dont know how but thank god. we were very reluctant starting the crazy medicine.

i wonder if i would have cleared up faster the second time around if i had some like a vanco and pred cocktail again.

i feel mesalamine is no help to me, even though my ulcers are in my large intestine

if it were herpes realted, that would mean flares would decrease with age.

how about someone find a cure for herpes and we will know

 

[DustyKat]

Hi bmeat,

Unfortunately scar tissue is tissue and that is the way it stays as it is a part of healing process.

The way you describe the appearance of your colon it certainly would seem it is Crohn's. Crohn's disease can affect only the large bowel and it is referred to as Crohn's Colitis. The symptoms of deep ulcers and a fistula do not occur with Ulcerative Colitis. Is this the disease you are referring to when you say Colitis?

Neither of my children have ever suffered with Herpes Simplex.

Dusty. xxx

 

[bmeat]

Hi bmeat,

Unfortunately scar tissue is tissue and that is the way it stays as it is a part of healing process.

The way you describe the appearance of your colon it certainly would seem it is Crohn's. Crohn's disease can affect only the large bowel and it is referred to as Crohn's Colitis. The symptoms of deep ulcers and a fistula do not occur with Ulcerative Colitis. Is this the disease you are referring to when you say Colitis?

Neither of my children have ever suffered with Herpes Simplex.

Dusty. xxx

Yes maam, Crohns Colitis is what I was diagnosed with.

Scar tissue won't even dissapate over long periods of time, like years? The inside of our gut if working properly is passing stool and getting slooshed off and reparing much like our skin right?

Now that I think about it our skin scars stay for our life even though our skin is always shedding and regenerating, BUT unlike the wounds on my skin, they don't scar unless i pick at them, and I never picked at my colon ulcers. I guess the remicade imitated this by causing the gut to heal unnaturally quickly?
:angry-banghead:

Neither of your kids ever had an ulcer/sore on their lips mouth or nose? Have they ever had large bowel involvment with ulcerations and blood?

 

[DustyKat]

No, scar tissue is scar tissue, it is the way the tissue heals. The scars that people develop on their skin may be worsened by picking at them but most scars that people have develop regardless of picking. Remicade is renowned for the ability to heal things too quickly the creating scar tissue BUT this also occurs without Remicade. Chronic inflammation also causes scar tissue due the bowel trying to repeatedly repair itself.

My son had some mouth ulcers but these are not Herpes Simplex. My daughter never suffered with mouth ulcers. They do not suffer with cold sores. Neither of them have large bowel involvement or bleeding but Extra Intestinal Manifestations (EIM's) of IBD are more common if you have large bowel disease.

Dusty. xxx

 

[Kev]

I posted some pics of my scar tissue in another area (WARNING! Not for the squeamish). I never had Remicade or Humira. The scars came about from severe bouts of Crohns. These are definitely not associated with UC, as UC does not cause deep tissue disruption. It may be an odd thing (quirk) of my male personality, but I am proud of these scars, yet am embarrassed by my surgical scars. I think I relate these scars from my battle with Crohns to 'war wounds', whereas the surgical scars remind me of a time when I was sick, weak and my overall outlook was bleak. I guess it's a matter of perspective. I spoke to my GI, and consulted with a number of GI surgeons to see if it was feasible to have the scar tissue surgically removed. Unfortunately, all said no way.

 

[bmeat]

I posted some pics of my scar tissue in another area (WARNING! Not for the squeamish). I never had Remicade or Humira. The scars came about from severe bouts of Crohns. These are definitely not associated with UC, as UC does not cause deep tissue disruption. It may be an odd thing (quirk) of my male personality, but I am proud of these scars, yet am embarrassed by my surgical scars. I think I relate these scars from my battle with Crohns to 'war wounds', whereas the surgical scars remind me of a time when I was sick, weak and my overall outlook was bleak. I guess it's a matter of perspective. I spoke to my GI, and consulted with a number of GI surgeons to see if it was feasible to have the scar tissue surgically removed. Unfortunately, all said no way.

Wait, I thought that colitis caused deep ulcerations and crohns involved only the top layers? Am I mistaken?

There is nothing that can be done about the scar tissues inside my large intestine at all? The noises at night prevent me from sleeping sometimes, any relief would be welcomed. There is no type of scar tissue dissipation enema or anything?

Time alone will not sloosh away any scar tissue at all?

I know you have already answered me Kat, and I understand you know a lot about this topic, but im trying to get more opinions.

Kev you asked about removing the scar tissue inside your intestine or the surgery scars? Also where can I find the photos? Thanks

 

[handle]

Hi bmeat,
Kev and Dusty are correct, and yes you have it back to front about U.C. and Crohns.
The scar tissue may be permanent but it does not necessarily mean that it will cause you any symptoms at all.
The bowel is highly adaptive and can also stretch/relax to some extent, once the inflammation subsides.
The noises that are bothering you are to do with narrowing (which is often temporary) excessive gas (which will ease as digestion improves) and also altered peristalsis (which can also returns to normal.)
So whilst the noises may bother you, they can (and often do) disappear over time even though some amount of scar tissue may still be present. It can take quite some time though. Try not to be too concerned about it. The main thing is that you are in remission.
all the best.

 

[cali]

I agree that scar tissue is there to stay. One of the reasons they don't think they can do a lap to remove my bad gall bladder is because I have so much scar tissue. When I had my J pouch attached and got MRSA it made a horrendous scar on my abdomen that looked like a butt, and they gave me plastic surgery to correct it and it worked great. I got the shingles on my bum when I was in the hospital. They called it herpes and I was shocked to say the least, but they said it was common for people with my condition. ick...

 

[bmeat]

Hi bmeat,
Kev and Dusty are correct, and yes you have it back to front about U.C. and Crohns.
The scar tissue may be permanent but it does not necessarily mean that it will cause you any symptoms at all.
The bowel is highly adaptive and can also stretch/relax to some extent, once the inflammation subsides.
The noises that are bothering you are to do with narrowing (which is often temporary) excessive gas (which will ease as digestion improves) and also altered peristalsis (which can also returns to normal.)
So whilst the noises may bother you, they can (and often do) disappear over time even though some amount of scar tissue may still be present. It can take quite some time though. Try not to be too concerned about it. The main thing is that you are in remission.
all the best.

i have been in remission for a couple months now, im not coming right out of the hospital. i havent had any mri or colonoscopy work to tell if it is scar tissue, but even my gi doc said when i was laying getting a remicade infusion and she listened with the she said "hyperactive bowel" probably caused by scar tissue/narrowing.



these noise are still going on since, and they may have calmed down a bit, but at night when im lying on my back or on my left side, it roars and i can feel it as well. when i was in flare i couldnt even lay on my left side without having to go to the bathroom

knowing thats its been some time is there any chance that maybe the scar tissue will dissipate/narrowing will go away? i am forming some big stool every now and then when i go in the pm vs the am

also yes my friends mom who is an acupuncturist tells me of how well the gut can heal vs. other organs of the body. besides the liver of course. i wish all of our guts could regenerate.

 

[Kev]

The pix of my scar tissue are in the 3 yr LDN update (time flies, I'm in my 4th year now). I went to see the top GI surgeons to see if the scar tissue could be removed either through endoscopic or general surgery. In my particular case, the answer is an emphatic NO. My scar tissue is too extensive... I'd probably end up with short bowel syndrome if they took it all, AND... if I had a significant flare (for whatever reason) it could all come back. It's a lose/lose proposition (from their point of view) in my particular case. My scar tissue does cause me severe discomfort, because tho the colon is flexible, scar tissue isn't... and mine is... well, unlike the 2 dimensional scarring I sort of pictured in my brain... in reality, mine is more like stalagtites/stalagmites (sp?) in a cave. Think if you look at the photos you will understand why it can be so painful.

 

[bmeat]

The pix of my scar tissue are in the 3 yr LDN update (time flies, I'm in my 4th year now). I went to see the top GI surgeons to see if the scar tissue could be removed either through endoscopic or general surgery. In my particular case, the answer is an emphatic NO. My scar tissue is too extensive... I'd probably end up with short bowel syndrome if they took it all, AND... if I had a significant flare (for whatever reason) it could all come back. It's a lose/lose proposition (from their point of view) in my particular case. My scar tissue does cause me severe discomfort, because tho the colon is flexible, scar tissue isn't... and mine is... well, unlike the 2 dimensional scarring I sort of pictured in my brain... in reality, mine is more like stalagtites/stalagmites (sp?) in a cave. Think if you look at the photos you will understand why it can be so painful.

I saw your photots. Wow, I wonder if my gut looks anything like that inside. Can you not form stool with those connections in the way? I dont see why they couldn't just cut them for you. Don't take away too much, just cut them in half or something