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05-01-2007, 11:44 AM   #1
CrohnsChick
 
New Here

Hello.......actually signed up yesterday, but because of a horrible herniated disc I had to go and lay down and didn't get a chance to post.

Anyways........I've had Crohns for a LONG time, but wasn't actually diagnosed or should I say Properly Diagnosed until June of 98.

Dr.s told me I just had IBS and if I changed my diet it would go away. I was constantly running for the bathroom and hated going anywhere that required having to track down a bathroom........most of the time it was just my colon being spastic and making me think I had to go.
I've had 3 rectal surgeries to try and repair annal fissures and the last surgery I had my surgeon mentioned the word Crohn's Disease to me, but didn't think that that was what I had. Hmmmmmm.
And then in 98 I woke up with this horrible annoying pain in my RLA and I figured it was female related and kind of ignored it. But it wasn't giving up so I went to the Dr. who referred me to a General Surgeon and after doing some tests told me it was my Gallbladder..........Well Ok......who am I to argue right? WRONG! I had my gallbladder removed and GEE my RL abdominal pain was STILL there!! So the General Surgeon tells me she's going to contact her friend who is a GI and wouldn't you just know it........he took one look at my x-rays and told her I had Crohn's Disease!!

I was put on 40mg. of Prednisone and 3000 mg. of Pentasa and after a year was in remission.......but for the last 3 yrs. it has really given me grief. My GI that I have now says that I have quite a bit of narrowing in the ileum and had even sent me to a General Surgeon to see about removing that section of intestine, but the Surgeon said he wouldn't touch me with a 10 ft. pole and that I need to find other ways to live with it.

So now I've changed my diet......once again and am still on the Pentasa, but not on Prednisone at the moment for the inflammation because of an upcoming Spinal Fusion that I will be having done.......so I am suffering with the inflammation and pain and trying to get it back under control.

It really seems to flair up 1-2 weeks before my monthly cycle and have asked the Dr. if the fluctuation in hormones would be causing my symptoms to flare up, but I never really get a clear answer on that..........do any of you girls experience this?

Anyways I have been trying to follow the Makers Diet..........fresh, organic foods and lots of homemade soups......cut out the junk. So far I've lost 12 lbs., but this week alone I've been just eating homemade soups and broths because everything I put in my mouth causes horrible pain and cramping from all the gas that's trapped inside!!

Ok......this has been long enough.........look forward to meeting more of you and learning a great deal more about Crohn's.........always doing research!
05-01-2007, 12:40 PM   #2
Teenie
 
Hi,

I'm recently new here too. My Crohns is not as bad as most of the others who are part of this forum, but it's been getting worse. I'm really sorry to hear what you've been going through. One thing I can tell you is reading this forum has helped me alot. Everyone I've talked to here has very nice and supportive.
05-02-2007, 12:06 AM   #3
D Bergy
Senior Member
 
Join Date: Apr 2007
Hello,

That was mighty generous of them to relieve you of your gallbladder. Usually they need to have some kind of evidence of disease before they start removing organs.

I am glad you finally got an accurate diagnosis. When I had my stricture problem I took Ginger with meals to help digestion. It is also a mild anti-inflammatory.

I find Crohn's a very frustrating disease to research because in spite of all the studies, there just is no clear picture of what causes it. All I know for sure is that there is a genetic component to it that seems to predispose people to the disease.

I have a list of eight possible viruses and bacteria that could trigger the disease and none are confirmed. Does not give you much to go on.

There are some real nice and helpful people here. That is always good medicine for me.

D Bergy
05-02-2007, 10:25 AM   #4
CrohnsChick
 
D Bergy said:
Hello,

That was mighty generous of them to relieve you of your gallbladder. Usually they need to have some kind of evidence of disease before they start removing organs.

I am glad you finally got an accurate diagnosis. When I had my stricture problem I took Ginger with meals to help digestion. It is also a mild anti-inflammatory.

I find Crohn's a very frustrating disease to research because in spite of all the studies, there just is no clear picture of what causes it. All I know for sure is that there is a genetic component to it that seems to predispose people to the disease.

I have a list of eight possible viruses and bacteria that could trigger the disease and none are confirmed. Does not give you much to go on.

There are some real nice and helpful people here. That is always good medicine for me.

D Bergy
Well guess I won't have to worry about Gallstones now!

I agree.......Crohn's is so frustrating and I never really get clear answers from my Dr. which is even more irritating! He has been pushing me to use Immuran for the last 2 yrs. now and I have just plain ole refused to use it! I have been on Pentasa long enough to see the side effects that it has caused after long term use and I sure as heck don't want the long term side effects of the Immuran on top of it. I have chosen to try changing my diet and see if I can't considerably reduce the inflammation and get this under control........I have just had it with the pain and bloating and gas and the severe flareups that leave me in agony, throwing up and leaving me so sore for days that it hurts for anything to touch my abdomen!!
They say it's genetic, has to come from one parent or the other............NO ONE in my family has a history of any intestinal diseases...........the occasional heartburn and my mom suffered with ulcers when I was young, but that's about it.
I found it soooo amazing that Crohn's affects everything between your mouth and your rectum........doesn't leave much for it not to affect!
I even woke up with severe leg pain in my shin one morning and finally went to the Dr.s because I couldn't even stand on my leg and I had this huge red lump that killed to touch! Found out it was Erythema Nodosum which is a severe skin inflammation associated with Crohn's Disease.........OMGosh.......I had never had anything like it in my life! I always tell my hubby that if I was a dog I would have chewed my lower half off by now!!

So add my CD to my DDD (degenerative disc disease) and the 3 spinal fusions that I've already had........going in for my 4th in June.........and it doesn't make for a really pleasant time right now!!

Ever just want to wake up and find out you were just having a really bad dream?
05-02-2007, 01:32 PM   #5
katiesue1506
Senior Member
 
Join Date: Nov 2006
Welcome to the forum! There was and is no one in my family with Crohns or intestinal problems either, but autoimmune diseases run rabid. My mom and almost all of the females in my family have thyroid problems and then my grandma has a blood problem... but just check and see if you have any auto immune diseases in your family.
05-02-2007, 03:38 PM   #6
ruthymg
 
Hi and welcome to the forum, I too am the only person with crohns in my family although my brother has reactive arthritis which has been linked to IBD somehow.


Ruth
05-02-2007, 06:02 PM   #7
flying4frogs
 
Hello and welcome to the forum. There are 2 people in my family (myself and a cousin) who have crohn's.

Hope you find information and comfort at this site.

Flying Frog
Nelson
05-02-2007, 09:37 PM   #8
KCMike
Senior Member
 
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Join Date: Nov 2006
Location: Kansas
I'm the only one in my family that has Crohn's but I personally know two people that have it.
05-03-2007, 09:40 AM   #9
TammySue62
Senior Member
 
TammySue62's Avatar
 
Join Date: Nov 2006
Location: hamilton, Ontario

My Support Groups:
Hi CrohnsChick
I also am the only one in my family with CD.
Although my nephew was diagnosed with coilitis
about 2 months ago.
Now just 2 weeks ago my daughter has been complaining
about some symptoms you get with having IBD.
Took her to her Dr. and she is sending her to my GI.
Wont know the results till may 14th when we both go and
see the GI..
She woke me up last night (First time in a long time that I was in a dead sleep)
complaining of really bad stomach pain,so much that she was crying.
I said do you want to go to the hospital she refused,gave her the
heating pad and a pain pill. It seemed to work. She is still sleeping now.
I checked on her I even slept with her last night cause she was crying
and very scared. I just pray to GOD that she dosent have this terrible
disease. She is also fighting strep throat has to see a ear nose and throat
specialist for that. I am just wondering if the medication that her Dr. has her on
might be causing her all this discomfort. I will check into this.

Sorry I got side tracked here CronhsChick, but have you tried
asking about Remicade infusions? It works for about 4 wks
for me then I suffer the last 4 weeks. Some mornings I cant get
outa bed because the pain in my joints and muscles are so intense
that I really can't move till I grab a pain pill.I can barely type to this post
because my fingers hurt so bad .I will have to wait till later on to
finish this post.

I forgot to welcome you to this great forum.
If you have any more Q's just ask away someone here
is sure to answer.
Goodluck
__________________
TAMMY
------------------------

HAVE HAD CROHN'S DISEASE FOR 30 YEARS AND STILL GOIN
05-04-2007, 12:34 AM   #10
pb4
Senior Member
 
Join Date: Feb 2007
Hi crohnschick

I've had crohns for 16 yrs and yes it's amazing that it can affect the entire GI tract from the mouth to the anus, I suffer with perianal crohns skin tags on the outside of my anus, that's actually where my CD first started, then moved into my rectom (proctitis) and colon (crohns-colitis, which is not the same as having ulcerative colitis) and my terminal ileum...it's basically not affecting my TI (for quite some yrs now) but has come and gone in the rectom over the yrs, stayed constant in the colon and the perianal skin tags are permanant for me since they were mistaken for hemheroides and an emergency hemheroidectomy was done on them (they tied them off) during a severe flare, which has unfortunately kept them in a permanant flare for the rest of my life...it's a messy and complicated disease, both physically and emotionally. All you can do is take it day by day...diet can often play a role with symptoms as well, eating healthy and avoiding processed foods, refined sugar and fast-foods is a step in the right direction as far as it being helpful with possibly lessening symptoms for many, having shorter and less frequent flares.

So much to learn, do alot of research, try many things to see what suites you best as it can be a very individual disease...probiotics daily have recently been researched and found to be quite a benefit for us mainly because IBDers tend to have bacterial over-growth and research shows that bacteria plays a significant role with the disease.

05-04-2007, 08:14 AM   #11
D Bergy
Senior Member
 
Join Date: Apr 2007
I am the only one with Crohns in my family. I have a son with Hidradenitis Suppurativa which I believe could be linked to Crohns indirectly. Possibly a different manifestation of the same disease.

Since both of us are inclined to test alternative and experimental treatments, we may stumble on to something that works for both diseases. Staph infection seems to be a factor in his disease. I wonder if it plays any roll in Crohn's? That is on my list of things that could aggravate this condition. I will test the theory, but it will be hard to determine if it works or not.

D Bergy
05-11-2007, 09:41 AM   #12
Crohniac
Member
 
Crohniac's Avatar
 
Join Date: Mar 2007
My GI that I have now says that I have quite a bit of narrowing in the ileum and had even sent me to a General Surgeon to see about removing that section of intestine, but the Surgeon said he wouldn't touch me with a 10 ft. pole and that I need to find other ways to live with it.



Welcome to the forum!! I have been able to find the much needed support here. I wanted to comment on what you posted about the Generel Surgeon. Why would he not touch you with a 10 ft pole? I am inclined to believe (probably because it is all that I have experienced) that significant narrowing will not be reversed through medicine and it is possible that removing that part of your intestine (terminal Ilium) would likely provide you with relief you have been needing. At least, it might allow medicines to maintain a remission. Just my two cents. I would try to get a second opinion. I know that surgery should be looked at as a last resort. I hope you are better soon!!
__________________
05-11-2007, 11:37 AM   #13
Nancy Lee
Senior Member
 
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Join Date: Nov 2006
Location: Windsor, Ontario
WOW!! I can't believe I missed this!!!

WELCOME TO THE FORUM!!!!


Hugs, Nancy
__________________
Diagnosed Crohn's & Colitis-January 1997.
Divertic.-2008

FaceBook- http://www.facebook.com/home.php#/pr...48&ref=profile

05-11-2007, 03:24 PM   #14
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Hi and welcome to the forum CrohnsChick
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
05-30-2007, 10:56 AM   #15
CrohnsChick
 
Crohniac said:


Welcome to the forum!! I have been able to find the much needed support here. I wanted to comment on what you posted about the Generel Surgeon. Why would he not touch you with a 10 ft pole? I am inclined to believe (probably because it is all that I have experienced) that significant narrowing will not be reversed through medicine and it is possible that removing that part of your intestine (terminal Ilium) would likely provide you with relief you have been needing. At least, it might allow medicines to maintain a remission. Just my two cents. I would try to get a second opinion. I know that surgery should be looked at as a last resort. I hope you are better soon!!
Gosh.....I haven't been on much because of my back.......having my 3rd Spinal Fusion in a couple of weeks.......so I'm sorry if I've missed some of your posts.

Well I was told by the Surgeon that removing the affected part of the ilium would not solve my problems as the Crohns would only find another part of the intestine to attack and that people with Crohns don't generally tend to heal very well after this type of surgery.
Now.....I tried to get another opinion and have met with great resistance from the Physicans Network that I belong to and guess I will need to call and talk with my insurance company to see what I can do. Why is it we pay out the butt for insurance coverage but can't seem to get the help we need??

My Crohn's is at it's worst right now and I'm attibuting it to the fact that I'm in constant pain from my back and the pain meds and NSAIDs aren't helping it either!

I have had constant diarrhea and abdominal pain since Monday and don't know how to get it to stop......I even took Lonox and it's not doing a thing.......well it's slowing it down so that I'm not going so much but once the pill wears off then I'm right back to running for the toilet and that is soooo hard to do with a ruptured disc in your back!

Have I said how much I HATE this disease?
05-30-2007, 03:12 PM   #16
vikkytoria
 
hi Crohnschick!
I recently have been diagnosed after being told i had ibs for 2/3 years!
my family is full of bowel sufferers!
my mum had crohns, my cousin has crohns, many of my auntys (my uncles dont really talk about things like this) has ibs, whether its been proffesionally diagnosed or not.
i find - even though its said it makes it worse - and my mum finds that a bowel of cornflakes doesnt hurt when passing through our system.
my mums had CD for 10 years so my "expierience" if you will is from her!
but the people in this forum are very much of help.
shes got millions of problems and ive seen her in and out of hosp many of times and to be honest it is quite scary to think that i may turn out to be like her, napping all the time etc...
my mum swears by codiene phosphate. i personally cannot take it as it makes me vomit! but apart from the vommiting my bowel movements decreased rapidly and i think i may of went 5 times a day compared to 25+. in the end i stopped eating and drinkin and got hospitalised then got diagnosed but thats a different story. my point is do demand what you think is right if you think your docs arent doing it right. i no that sounds rather idiotic but its true. my doc was just going to send me away with rennies basically (for interjestion) but i refused because i new if i went home with nothing that was going to work then i would of probably have gotten far worse than what i did. i hope you feel better soon and that i have helped in the little bit slightest.
i do recommmend ginger and my mum got recommened aloe vera juice and cranberry by a friend who has colitus. it worked for a little while but was too acidic for her. maybe you could try that!
oh and i hate the disease too so you are certainly not alone.
it has just basically ruined my life!
05-30-2007, 06:40 PM   #17
D Bergy
Senior Member
 
Join Date: Apr 2007
D Mannose is the sugar in Cranberry juice that helps with bladder infections. It is supposed to unstick bacteria in the urinary tract so it is simply excreted.

I often wondered if it would help Crohns by the same bacterial effect. It may be worth a try.

D Bergy
06-01-2007, 06:08 PM   #18
flying4frogs
 
Welcome to the forum.

Nelson
06-03-2007, 05:54 PM   #19
ReeRee
 
Hey CrohnsChick!! Glad you made it over! You're going to love it here and love everybody here too. I'm so glad I can come here and feel "normal", which around my house is just a setting on the dryer..haha.

Welcome!
06-04-2007, 10:58 PM   #20
hummingbird
 
I was diagnosed in 1984. (Yes, a long time ago.) I was 33. My daughter was diagnosed at 10 years old. I have had many flare-ups, some ending with an IV hook-up in the hospital and 2 ending in surgery. My veins were so shot they put a port in to acess my veins. I've been on many drugs, but now I'm on a combo of 16 pentasa pills a day and Remicade every 4 weeks. I'm still having pain and experiencing some nausea. My daughter has recently been put on Humara, a recently approved drug used for severe rhuemetoid arthritis. She gives herself a shot in her stomach every other week. She is doing extremely well right now. Glad to have a way to vent, cry & share stories with other people with Crohns.
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