Ashley web page

This is my story of 60 + plus years
having Crohns- Colitis

as of Dec. 2010 I also have

Anal Pernianal Crohns Disease as well

that included Abscess's & Fistulas

as a young child I was very skinny, smaller then all my other friends were

I was adopted at 4+1/2 years old

I was sick a lot and had many stomach aches, as a pre-teen ? teenager I never got over 90-93 pounds, my friends from school were always bigger than I was and used to kid me a lot.

I was hospitalized around 13 yrs. old for a week, I remember having green runny diarrhea, not being able to hold it. And I went in my hospital gown.
It was so embarrassing, I remember having the nurse having to help clean me up.
Dr's told my parents "well she's just a sensitive girl little nervous, etc. I don't remember if they gave me anything probably antibiodicts then they sent me home.
Through those years I didn't realize I had what's called "flare up's"
I must have been in out of remission a zillion times but had no idea that I had an incurable disease called Crohns.

When I was married I was a 90 pounds, a size 0-3

this is me at 19+1/2 years old

I had all my 3 children all in my 20's. With no complications.
And actually after having them I stayed about 103-106 pounds which I finally looked healthy at a good weight.

Me at 21 years old

I remember off and on at that time not felling well sometimes.
I saw my gynecologist off ? on thinking it was something to do with that area of my body.
I was loosing weight a lot,feeling run down, ok with 3 kids you do have a lot to do, but this was different.
Remember in those years there wasn't computers or books to read you went on what Doctor's told you you believed them, and didn't question them.
I remember going to the bathroom one day the toilet filled up with blood I'm talking lots of blood!
Boy it scared me I immediately went to the emergency room.
Dr's ran blood work urine sample's came in told me we don't really know what or why this happened or what's wrong with you but we'll put you on antibiotics.
This happened to me off and on. I didn't know I was anemic either back then.
Once we were on vacation at our grandparents place on the shore about 2 hrs. drive from our home
I remember having to get into bed, I felt shaky,cold, weak.
Something was wrong with me.
What was it?
It wasn't a flu or a cold, but my insides hurt I felt so weird that's all I know.
My husband I packed up everything, the kids headed back home then to the Dr's office again.
Now I was young,looked pretty good from the outside.
The Dr. looked at me as I tried to explain to him about what I was feeling inside.
He looked me straight in the face said this Quote"YOU LOOK GREAT! IT'S ALL IN YOUR HEAD JUST WISH IT AWAY!!"

So I left not knowing starting to think ok maybe he's right, is it all in my head?
Again another emergency visit to the hospital a few months later with the huge amt. of blood in the toilet again and this Dr. said to me you probably have hemorrhoids maybe from having kids just don't sit on cement!Now what the heck did that have to do with anything?

At 29 years of age, after seeing 3 gynecologist thinking it had to do something wrong in that area.
This Dr. says well we normally don't do this at your age but being that you have had 3 children we think we should do a complete hysterectomy on you.
Again no computers at that time, no one to ask question or talk to. I agreed.

After it was over they came in said "well we didn't find anything wrong there" !!!
In this day ? age I would have said ah well then can you put everything back in please???

So at 29 I go though surgical menopause ? on hormone pills.
Trying to recuperate with no help with a 2 yr. old, a 3 year old a 5 year old.
At 30 years old, loosing lots of weight again,looking real skinny,and very malnourished I got hospitalized for a week.
They do blood work, the old kind of barium procedures old kind of colonoscopy with no anthesthia no pain meds given! OUCH!

And the Dr. says we think it's probably maybe colitis,or IBD so just don't eat anything too hot or too cold!

I go on for years after with now what I realizeI went in ? out of remission again not knowing I was.

We had lived in Conn.for many years later moved to Vermont which is where we live now.
The 1st year in VT. I got a part time job close to home at a Country store I remember for 6 months straight after I would come home from work I would have these black tarry stools.
But I didn't know that meant something was terribly wrong, I was doing everything a mom does,with 3 kids in school,cleaning the house, running errands working.Hate to say it but I just ignored it,I had energy then,didn't have pain that I remember,maybe a lot of gas all the time. And I was actually at a larger weight then I had been years before.
So I just went on....

We have a really neat family Dr. here in Vermont, I didn't even think to bring it up to him, at that time, as I was feeling ok.
Just thought I don't know maybe something I'm eating? who knows....again in those days still no computers to read about signs of things so I just ignored it, then that just stopped happening.
This is him

Dr. T.Evans

Then I went through a series of operations.
I broke my tail bone, ouch had to have that removed, that took 2 years to be able to sit down with out hurting.
Kidney stones.
Recovered from that, then 2 years after I had an emergency gall bladder situation happen full of stones 1 large one was blocking the opening of the gall bladder, the surgeon said if it hadn't been removed when it was I would have died.
If he had only turned the scope while he was inside in a different direction he would have seen the crohns at that time but he didn't look.
This started a really bad down ward fall in my health after that surgery.
After every thing I ate would come right out, like you turned on a facet, food would just run right out of me.
So every week I was loosing 2-3 pounds for weeks that turned into months,and then a year and 1/2 later I looked so ill (I was) and frail,and malnourished.

When I had called the surgeon about a half dozen times in the next 3 months & went into his office for a visit and asked why is happening to me?
I know a lot of people who have had their gall bladders removed can pretty much eat anything they used to eat but why anything everything I eat even bland foods it's coming right out after? I'm going to the bathroom like 10 to 20x a day.
He looks at my records said oh I guess with your history which says IBD it's probably just that.
PERIOD!
Here are some pictures as I spiraled down to 82 pounds and not on purpose!

Looking very emancipated my bones protruded,I could barely walk,I felt so weak,so ill,and no one could tell me why!

When I did see my regular practitioner he came into the room my husband Greg was sitting there in a chair, I was sitting on the table, my Dr. said hi to Greg then looked over at me he jaw dropped open. He had a look of real concern!
He looked at me said oh Ashley you are so very thin he knew some thing was very wrong!He looked scared. I was scared!

So the next months were filled with lab tests, Dr's office visits, being referred to a Gastroligist in my area

I was seeing this Dr. for about 1& 1/2 years.

first came lot's of colonoscopy's.
Next upper & lower Barium test done.

blood work almost every other week for months ? months and more X-ray's,and more procedures's.So many drugs to try...so many machines to have procedures done
Dr. J.P then starts me on not all at once but over the next year and a half.

Antibiotics, Belladonna,Entocort,Prevacid,Welchol,Asacol,Azathioprine,many more then I remember now.These are just a few below that I tried.

So many medications that I tried

just some of the Xray machines I have been through

Only some of the hospital wrist bands that I saved

At the time seeing this Dr. I was so malnourished, I was so tired,so run down,drained I just couldn't think straight I couldn't seem to articulate very well at that time trying to explain everything how I was feeling inside.
Even with all those test done a Radiologist at the hospital in my area that did the barium upper and lower I watched the whole thing I asked him questions what he was looking at what he saw he said it looks to me like crohns disease!
Ah ha!!!
1st time ever hearing that word! What was it?? This thing called Crohns disease?

Ok now many years later we had computers!! Thank Goodness.

When he wrote up his report said consistent of Crohns disease looked to be about a foot + of the disease plus

my ilececol valve seemed to be affected which also meant it couldn't open shut properly too my intestines were very looped over it and looked like ulcerations on my intestines as well.

This is what Crohns with Ulcerated Colitis looks like which the disease attacks the healthy tissues

So report sent to Dr. J.P, visits to him about every 2-3 weeks,blood work constantly he did a special blood test that can show if you might have crohns disease which mine tested positive.

Ok we were on to something finally after all these years!
Maybe it wasn't in my head as all those other Doctors had said over those years, but it was in my gut!!!

I was desperate for answers was so tired sick 24/7 ? in so much pain every time I ate.
I knew sometimes I could hardly speak cause I was so weak!
People who knew me for years years from Conn. in Vermont I would run into them at a store in line they wouldn't even recognize me until I said their name hello they would look at me say I know I know you.
I would say Ashley the looks on their faces told the story...they looked horrified
Me with my sense of humor I guess I put on a facade to tried to put them at ease where inside I was shaking,could hardly stand up,walk...making meals was even hard to try stand up by the stove long enough to cook something.

I had read every book at the time there was, looked on every site about crohns, like Med.com the MayoClinic.com hadn't heard until later about CCFA.ORG
18 months later I am house bound, only going to Dr. visits, lab work...and then being hospitalized so many times that I lost count.
Had severe intestinal bacterial infections, blockages so much diarrhea all the time.
Many ER trips. Quit a few hospitalizations followed.

All the drugs that didn't work, or I had such bad side effects that I couldn't take them.
I had read about Remicade at the time it scared me to death to try it.
Also at the time I hadn't met anyone with crohns disease to even talk to or ask questions.

On one of the visits at Dr. J.P's office he said Ashley I will never give up on you!
More pills to try....
Then came the time when I was finally ready to do the Remicade give that a try!!
He wouldn't let me? Why? I was willing to.
He suggested surgery instead. I said I remembered him saying that surgery was the last resort once you have surgery your chances of the crohn's returning back to where they join the healthy tissue to the healthy it always returns back,and I read the statistics after a 1st surgery your chances of having a 2nd one increase's and a 3rd etc. then you end up with short bowel syndrome.
So I begged please let me give the Remicade a try I'm over the fear of what I read about it....nope he wouldn't let me! It was going to be a re-section-surgery!

Hospital in my area that I was in many times

Dr. Gadowski did my 1st re-section

I was sick a lot and had many stomach aches, as a pre-teen ? teenager I never got over 90-93 pounds, my friends from school were always bigger than I was and used to kid me a lot.

After it was over they came in said "well we didn't find anything wrong there" !!!
In this day ? age I would have said ah well then can you put everything back in please???

And the Dr. says we think it's probably maybe colitis,or IBD so just don't eat anything too hot or too cold!

I go on for years after with now what I realizeI went in ? out of remission again not knowing I was.

Then I went through a series of operations.

I broke my tail bone, ouch had to have that removed, that took 2 years to be able to sit down with out hurting.
Kidney stones.
Recovered from that, then 2 years after I had an emergency gall bladder situation happen full of stones 1 large one was blocking the opening of the gall bladder, the surgeon said if it hadn't been removed when it was I would have died.
If he had only turned the scope while he was inside in a different direction he would have seen the crohns at that time but he didn't look.
This started a really bad down ward fall in my health after that surgery.
After every thing I ate would come right out, like you turned on a facet, food would just run right out of me.
So every week I was loosing 2-3 pounds for weeks that turned into months,and then a year and 1/2 later I looked so ill (I was) and frail,and malnourished.

Only some of the hospital wrist bands that I saved

my ilececol valve seemed to be affected which also meant it couldn't open shut properly too my intestines were very looped over it and looked like ulcerations on my intestines as well.

This is what Crohns with Ulcerated Colitis looks like which the disease attacks the healthy tissues

So report sent to Dr. J.P, visits to him about every 2-3 weeks,blood work constantly he did a special blood test that can show if you might have crohns disease which mine tested positive.

Ok we were on to something finally after all these years!
Maybe it wasn't in my head as all those other Doctors had said over those years, but it was in my gut!!!

Hospital in my area that I was in many times

Dr. Gadowski

He's a very good surgeon he's the one who told me if the other Dr. that removed my Gall bladder had thought to turn the scope around he would have seen the crohns 2 years earlier! He also just did surgery again in Oct. 2010 because I had 14 anal abscess & a ended up with 6 fistula's too.

All the things they just don't tell you to expect with intestinal surgery.
I will tell you though!
They tell you it'll take a while to recover,but you'll be as a good as new! ya right sure!
So another time where I'll be recovering from another major surgery....great.
When I woke up in the ICU ward the 1st couple of days were a bit hazy but there was a tube though my nose into my stomach,ouch! And what the heck was that jar on the wall what looks to me like green pea soup coming out my nose tube up to that jar oh bile I'm told.
I can tell you this I never liked pea soup in the past will never eat it ever after seeing that plus on the 2nd day after surgery they want you to get up out of bed start using the bathroom.
So in this hospital you have those leg things on that velcro around both legs vibrate so you don't get a blood clot, you have your IV machine, then there's that tube in your nose hooked up to that jar on the wall so you have undo those leg things shut of that machine, take the tubing from the jar shut off that machine,take one end of the tube hook it to the other end you kind of look like you had your nose pierced that is about a foot long in a circle lovely!
They will only give you ice chips for days no food, no water only ice chips to suck on.
What a pain it was every time you have to go to the bathroom to un plug, un velcro everything then re hook up everything again.

I next went to a private room for about 10 days.
Now my veins from a lot of hospitalizations, IV's were so shot that about 2-3-4x a day or night someone would have to come in find a new one to put the IV in, cause mine would blow, collapse, it was so painful each time over over.
So finally the Dr. B had to put a port line in my chest so they could take blood, put the meds though it,etc. woo-hoo my veins could get a rest.

More ice chips when would I get real FOOD!
Your stomach is getting bigger bigger not from food obviously, but from all the IV fluids, electrolyte's ? medications in the bags having from your machine
here is a picture taken of me a few days after being home from the hospital what my stomach looked like I looked like I was like 6-7 months pregnant! It was so swollen at one point I looked down at my stomach ? when Dr. G came in I asked ok when am I due?
He smiled and realized I had a sense a humor he said it would go down.

Actually here are a couple picture's taken after that 1st surgery, and when I was home 5 days after getting out of the hospital you can see how swollen you look.

I thought if you stuck a pin in my stomach it was gonna blow!
It's kind of weird scary too eating food after that surgery, it feels different.And it has never been the same eating digesting since then. It is still till this day.
And even though I could be on a regular diet I have to eat a non-transfat diet,and very bland. I can only eat very little things now.So many things I miss eating.
But heck finally food was coming.
For the pain I was given a morphine drip plus a couple other pain pills Tramadol, Hydrcodone.

I got really good at all the times being in the hospital's using 1 hand to wash my hair in the sink, taking a sponge bath
I had a private bathroom with a shower could take one, but with my veins being so bad they try to put a rubber glove on. put tape around it so supposedly it'll keep your IV dry wrong!!
Water still gets in then every time another place had to be found to get the IV in again so it wasn't worth doing the shower thing.
Now I learned from the 1st time when I first had to be hospitalized not to trust your husband to know understand what you need want from home to bring in.
I don't like having to wear those hospital gowns or pants tops it's too cold, if you small their too big so this is what I have ready packed all the time in a suit case.
Now for men somethings might be a little different of course.
I have if it's warmer weather, 5 long cotton night gowns long cotton bath robe, summer slippers, if it's colder weather I switch the cotton ones to 5 flannel gowns plus a flannel bathroom warmer slippers,socks.
Travel size bottles of my favorite shampoo cream rinse, a body spray, body cream, new tooth brush,tooth paste,mouth rinse,facial moisturizers, lip balm, remember your skin lips gets so dry in the hospital,hand lotion, Tucks.Charmin with Aloe toilet paper it's a must for your behind when you have this disease.
And a new product called poopourri. It's GREAT for those toxic smells that people like us know about when you have this disease.
Plus about 10 pairs of cotton boy short underwear plus a huge amount of the promise pads trust me on this and why....
If you are having a longer stay to be blunt craping your butt off & crap in your pants like I did they bring in disposable underwear the one size fits all are fine if your let's say a heavier person but of your small like I was they fall off you so they have to tape them up.
I also bring in Promise Pads & also carry with me at all times in my large hand bags a couple of them just in case, a clean pair of under ware, plus I have back up in my car too plus wipes.
These pads are great as they stick into you underpants so ya don't have to wear a diaper should you have an accident at least it's contained in the pad they are not ncomfortable to sit on really a must have at all times! I didn't take a picture of all the items but I explained already what I have packed at all times for the just in case gotta go into the hospital...and again I only change the sleep wear seaonsal.

About 6 months later after surgery it returns back to the next foot of my intestines

next Dr.C.Siegel

This GI Dr. I'm so very blessed to have he was a God send to me who truly saved my life! He has been my GI now for over 10+ years

I looked pretty sad and was very depressed after so many months & years of dealing with this.You can see it in my eyes here.

This Dr. is really an expertise in his knowledge & field! The best GI I have the pleasure of knowing!
He's one of the top Dr's In New England heads up the huge Department of Gastology at Darthmouth Medical Center in NH.
He teaches about intestinal diseases at other hospitals all over the country, teaches clinics,and trains other DR's he's involved with CCFA.ORG and is dedicated to help find cures for these diseases.He is so smart and has seen thousands of patience with intestinal disease's.
Thank you so much for your continued dedication to help not just me but thousands of others!!
God Bless you!

I was hospitalized at Darthmouth Hospital for about 10 days there.Which I continue to go up there to see my GI. still.

I was pretty sick here and very thin and in so much pain. I weighed 82 pounds Part of Darthmouth Medical Center Teaching Hospital in Lebanon,NH

So Dr. C.S met with us the questions he asked me were put different then all the other Dr's like he really understood, when I described things he KNEW!
He Really knew.
I was so amazed! This time my mouth was open like ah he really understands what I am saying-asking!

I remember though saying to him that with everything that had been done to me over the years with all the drugs, surgery's, I didn't have much faith or hope at that time that something was going to work.
Heck so many years had gone by and I never heard this word Crohns Disease, that there was no cure for it it took me about 2 years to really understand it myself.
And I'm still learning....all the time.

So next came the Video Cam to try.

It's kind of neat actually it takes 55,000 live shots as it travels though your body. Here is mine that I saved

After this procedure next day another colonoscopy was done,yup another one of those! Which showed again how bad things were inside how inflamed and the disease was very active.

After being in this hospital I got to go back home and had an appointment to go back up again to see Dr. CS.
When we did and talked about everything,I started Methotrexate, and Prednisone, and started Remicade Infusions right away!

I HATE Prednisone! The side effects for me were horrific! I started the Remicade infusions every 8 weeks,then every 6 weeks for almost 2 years until my body built up antibody's against the drug so then Remicade was out...next another drug to try.

This is me in the infusion room having Remicade Infusions every 6 weeks for 18 months

Next came Cimzia you have 2 shots in the abdomen every 4 weeks and a nurse comes to do them.

A home nurse giving me the shots at my home this one was my first dose, ok not too bad, every 4 weeks I had them for 10 months but it didn't help me at all and my disease got worse again during those months because the drug just didn't help me.

So another colonosocopy yes with this disease you seem to have to have a lot of them. It's always an on going thing for people with UC-Crohns Disease.
Sept. 2009

filling out forms After the procedure

Once again things aren't looking too good inside.

After the procedure I started one of the LAST DRUGS there is for me to try Humira. The nurse came in the 1st dose is 4 shots in the stomach,I have to say this shot really REALLY
hurts like heck! Although it's only a 10 second shot. Then you have 2 shots again 2 weeks later and then 1 shot every 2 weeks. This is usually the normal dosing.

Since my situation changed back in 2010 when I devoloped the anal abscess's (14 in 10 weeks time) that caused 6 fistular's I have 2 shots of Humira weekly now.

This is the Humira Pen

My husband Greg gives them to me every every week. I have to say I never get used to them,because it feels like I am being stabbed in the stomach with a tip of a knife.

Thinking back a few years ago would I ever finally get better?And as the weeks turned into months then into years where I ended up being back in the hospital so many times,so sick so many times.

I had lost every bit of fat on my body all muscle alot of years ago at that time.
I felt constantly weak, dizzy, could hardly eat very much at all,anything I did eat well just came out in about 10-15 min. after.
Bathroom trips were constant. Which of course leaves you feeling more weak.
I felt trapped in this body, trapped having to pretty much stay at home, I couldn't drive a car, very seldom did I have anyone to visit because all I could do was sleep.
l couldn't clean my house, carry the laundry, go out to do errands do anything that I was so used to doing for years I just became house bound.
I researched everything I could on Crohns disease, read every book there was. Tried a lot of things.Natural products too.
I remember this so well one book was about short testimony's on a lot of people struggling with this disease that was one book that I cried my heart out as I thought back then reading it & saying oh that would never happen to me, I won't end up feeling or looking like that, at that time maybe I was in denial but I thought what do they mean you become house bound, or can't eat out, or can't drive. All the changes some went though I wanted to hear how THEY GOT BETTER! What worked for them.
And then over that next year I realized so much I had read was happening to me too. And how the days then turned into weeks, months years with out going into what they called
" remission" I had forgotten what it was even like to feel normal! It had been so long I couldn't remember what that felt like.
Our friend from our church & other friends from all over the country were praying for me non stop.Thank you all!

I sometimes gave up hope,the constant 24/7 pain I felt in my intestines seemed so unbearable it seemed to never let up!
One thing 95% of the time I never lost my sense of humor though it all. I think that was one thing that did keep me going.

The bathroom situation you have to know where they are at all times!
And how close it is.Will you make it in time?
That is a BIG part of this kind of disease.

You can see what Crohns Disease can do to you, it certainty changes how you feel, how you look, one day you are feeling strong, some days weak.
You loose weight, you never know from day to day what you will feel like.You body attacks it's own immune system when you have this.
It's called the TNF Factor which means Tumor Necrosis Factor.

Your body's immune system begins attacking it's system attacks healthy cells,your body is producing antibody's against itself!

Also eating food it's hard to explain this but your body sometimes attacks that too because with crohns it thinks of food like it's the enemy like if you had a cold coming on, or a flu let's say so your body goes on the defense.
There is no none cause for Crohns Disease and no cure for it yet.
But I have faith and know that God knows why & He has allowed it to be in my life for a reason. I never asked God why me? Because He would say why not you!

Now you have seen a lot of the pictures of me looking pretty ill but here are some when I was in remission sometimes off on my body changes so often that it goes up down like a yo-yo. I still struggle day to day. One day I may be like 100 pounds then up to 106 then a few days later down 5-6 pounds. Never stays the same.I have been a size 0-10 and back down again. And body changes are so frequent that I never look the same week to week sometimes.

me.jpg.jpg

Now I know what your also thinking too! Boy she doesn't look sick at all in these. That is the deceitfulness of this disease. Outside you can sometimes look great!
But inside your body is a whole different story going on in there.
It's called living with a concealed illness. From the outside people sometimes think oh she or he doesn't look sick at all so what are they complaining about?
But at that moment your insides might be in agony, you may be feeling like your going to fall down and pass out. Your guts are twisting & having painful spasm's.
You maybe loosing control of your bowel's and may only have 5 to 10 to 20 seconds to get to a bathroom,and many times you don't make it.

A lot of the drugs your on make your hair fall out. Make you feel so awful with the side effects many of them have. Ruin your teeth and gums. You can't sleep sometimes,and only to pass out later in the day because your body just has to. Nothing is ever the same as it once was. You miss going out to eat at a restaurant. You miss many functions that you wanted to go to but when that day comes your body does it's thing and you have to cancel what you hoped to do.
You miss work,or some can't work anymore.Some miss school. There is so much that people that don't have this disease just don't understand.

I am so very thank full that I have a husband that has loved me though it all. He has had to do more things then before because of days ,weeks or months when I couldn't do normal things that most people take for granted.

I so appreciate him for being there though it all,and he continues to be. His name is Greg. And yes he has long blond hair too :) I keep trying to catch up with his but mine falls out so often that I think he will always have longer hair them me.

my wonderful husband Greg

In May 2010 I had to have my 2nd re-section. This was done at Darthmouth Medical Center in NH.

Another area was narrowed,ulcerated,inflamed. This time I had the surgery done Laparoscopic surgery. Have to say instead of the huge incision like the 1st one although the surgery hurts the healing time was much shorter like 6-8 weeks.

Since my intestines were so narrowed I was throwing up green bile at home & having green stools. I had been in pain for a long time.

Here are some pictures from this surgery. You'll see the good, the bad & the ugly of it all.

I never go anywhere with out my TP with aloe ever! :)

Waiting for another scope to be done oh I hate them so many over the years

Just came back from surgery

And no veins left to use to a pic line and the lovely NG Tube

I hate them as much as having a scope done

when the intestines block like when mine did a few days after surgery they have to stick the tube down your nose into the stomach to remove the bile which is sucked out of the stomach into a jar on the wall.

Since so many hospitalizations over the years,surgery's,blood work

I have NO meaning NONE of my veins are any good anymore. They are all blown. So had a Pic Line put in or sometimes a port in the chest.

Many things going on this pole TPN because your not able to eat food only given ice chips for 13 days, TPN is the only nourishment you can get,and electrolytes,potassium,pain med machine,and all kinds of other stuff.

Ashley & Greg

This was a hard surgery for me to recover from as I lost so much weight before and after being admitted.

By the time I came home I was down to about 92 pounds. I felt so weak & so tired.

I had to have surgery again in Oct. 2010, man this was so very pain full having abscess's on the right & left side of my rectum could not sit for days and it even hurt to walk. As mentioned crohns can go from your mouth or upper intestinal area to lower intestinal & anus too. I ended up getting 14 anal abscess's & 6 open wound fistula's. with a lot more surgery's done, 6 seton bands sown in to keep the open wound fistula's open to heal from the inside out. It took almost 3 & 1/2 years of doing tons of sitz baths, horrible exams every few weeks, I had total fecal incontinence, I think more pain full then even gut surgery was.

what a seton band looks like I had 6 for years which have been though the years one at a time removed. The problem is once you get anal abscess's you are prone to get them again and again.

Lots of things to have on hand for this type of situation

Late in 2013 from Oct. till Dec. of 2103 I also had crohns hit my mouth, I had abscess's on my tongue, roof of my mouth, in my throat could not hardly eat,or swallow, after using a med for that for a few months I was finally able to get rid of it there.

My last scoop done in early 2014 once again showed I have 20 new ulcerations on my intestines again. Plus after even doing the 2 shots of Humira weekly for a few years now it may also have stopped working for me.

Which I don't know when the next re-section will happen, or which newest drug I may have to go on. It is a never ending disease that is like a roller coaster that you never can get off the ride.

April 2014 I have a Rotary Cuff Tear & also what they call "Frozen Shoulder" never hurt myself, feel or anything. It just happened. I have heard this can last from 1-2 years. I have been going through Physical Therapy for that weekly & I have to say this thing hurts a lot and many sleepless nights. You can google what this is.

As of March 2015, Humira has stopped working for me, my colonoscopy showed that the crohns has now spread through out my whole colon, from one end to beyond. GI said to many ulcerations to even count them all. So the Humira was stopped.

I have now gone on a new drug infusions again the drug is called Entyvio it will take quit a few months to see if it is helping. Then if not will have to quit that one to.

Since June of 2015 not only knowing so many ulcerations have spread though out that area, I saw my special surgeon again caue of severe anal pain when he looked with a scope he saw my whole anal (anus) was also ulcerated to. I can't help but feel once again if Entyvio fails what's next another new drug or drugs that will come out. Or at some point an Ostomy will finally happen. Which is NOT a cure. You still have to stay on a drug because you are not cured even with that.

Just recently this past Feb. after my scope I for sure thought my GI Dr. was going to say a 3rd resection again he said nope not this time, I had so many ulcerations from one end to beyond. they were over 40-50 and couldn't even get a number. I stopped the humira after 5 years of highest dose given and started Entyvio infusions every 4 weeks. Added the surgeon I had had he examed opening off my anal canal and told me I now have my whole anus is also full of painfully ulcerations there to.

With each step of going on my journey in my life of over 60+ yrs now with this disease you find what you need to have on hand this was for the abscess's & fistula and of course the crohns & UC I have as well.It's called "My Life's in the Toilet"

https://www.facebook.com/groups/204337129693312/

plus I started for single people that have Crohns, UC, IBD,IBS, colon cancer & Ostomie's A Dating Site. Yes even though I am married so many of my crohns/uc friends have stated if I could only met some one else that understands, that will accept me just the way I am. Many couples have split up. Marriages broken because their partner could not handle the years of stress with living with one that has a chronic illness. That site is

https://www.facebook.com/groups/423797604407425/

I also did a few video's one sadly is only a few of many who have died through complications of Crohn's Colitis and Colon Cancer many so young and it' so sad that they did not get to live longer it breaks my heart.

That link is

https://www.facebook.com/groups/1526976324246467/

A very good site for anyone, a relative, a friend, a family member, a co-worker with IBD, or Colitis, or Crohns , UC or any intestinal disorder is

http://www.ccfa.org/

which is the only foundation trying to find a cure for millions of people like us in the US

there are people from all over the US and other countries on it.

Which I love as everyone is so nice we all help each other & encourage each other,there are questions,and pictures,and people of all ages and all stages of this disease.
There is so much support too! So join it ok? It's a place you won't have to worry about being embarrassed about talking to others what your experiencing.

So many are suffering,and say they don't have a life, some can't go to school, or go on a date, go out with their friends, I understand this I lived it since I was a child was misdiagnosed for so many years when the Dr's I had back then at a young age in my teens in my early adulthood they didn't know back then about crohns, I don't hold any animosity towards any of them, I only know that somehow I did date, did many things, grew up, got married was able to have at 3 children, & be blessed to see 9 grandchildren be born.
Some never are able to do what I was able to sadly.
I went in out of remission with out even knowing I was.
Until it took it's toll after all those years progressed to a serious situation.
So now that they know so much more and are able to diagnose it much earlier but remember they still don't have a cure yet.

We need to find a cure for the million's of people suffering in the US plus other countries that have this disease.

May God Bless You Give You the perfect peace that passes all understanding!
And may you be blessed with love & good health!

Sincerely; and God Bless You With Good Health

Greg & Ashley <><