Share Facebook


05-31-2006, 08:14 PM   #1
bubazoo
Member
 
bubazoo's Avatar
 
Join Date: May 2006
new member

Hello, my name is Tom.. I'm 35, reciently divorced, no kids, from Warsaw, Indiana.

I've had Crohn's Disease since 1996, but wasn't officially diagnosed with it until 1999, before that the doctors didn't really know what it was.. I kept floating from job to job, because I kept getting the flu and colon bleeding but had no idea why.. wasn't until the disease started spreading to my illeum, stomach, appendix, gall bladder, and other areas when the surgeons finally came to the conclusion I had Crohn's, and to this day its still a guess.. I have colonoscopies every 3 years, but every time the GI's can't make up their mind rather its UC, crohns, IBS, IBD, or something else, but they just sorta named it crohns because of the other symtoms that pretty much went from my throat on down... By 2002 my condition was getting so bad the doctors kept recommending surgery, and I just wasn't about to accept that.. I had my appendix removed before I discovered all this, but then when my condition started to spread to the gall bladder I knew something had to be done.. my GI wanted me to have my GB removed, but I wasn't about to accept that how young I was, so I started looking up my symtoms on the internet, and researching crohns in general, and I discovered a diet called
SCD "specific carbohydrate diet".. I first asked my doctor if this was a safe diet to go on, and he says "oh diet has nothing to do with crohns you can eat whatever you want, bla bla" hehe, I'm glad I decided not to take his advice on that one, if I had I probably would not be standing here right now. hehe.. So I figured, whats the worst that could happen? so I go on a sugar free diet for a few months, whats the harm right??? well, didn't take but 2 weeks on the diet and discovered almost immediately my symtoms were improving, in fact after a year on SCD my gall bladder problems disappeared entirely, along with pains in my gutt, etc in fact the doctor didn't see any signs at all, so I took it upon myself thinking the diet fixed whatever it was that was wrong with me, and went off the diet.....didn't take but 2 weeks off the diet when the diarrhea started to return, along with the bleeding, cramping, and all my other symtoms, in fact it was worse then a usual flaire, all that just from going off that diet.. Then out of nowhere, I discovered what looked like a hemaroid starting to appear.. I asked my GI what it was, he had no idea he said but suggested I see a rectal surgeon, so I did, he took 1 look at it and said from that moment on "yeap thats crohns" then he says "you have a Fistula" and I asked him "whats a Fistula?" I never did quite understand until about 2 weeks ago what a Fistula really is.. THe internet just kept telling me "a hole that connects an organ to the outside skin" which made no sense to me at all, like, how can an organ connect to the outside skin? ya know? just didn't make any sense to me... wasn't until after the 5th Fistula surgery that I discovered what a Fistula really is... Its a hole in the rectum itself that cannals thru to the inside skin...I was like, ohhhhh!!!! hehehe!! so I went back on SCD of course, and kept continuing to try to fix my Fistula with diet hoping it would fix itself after awhile, since 5 rectal surgeries on them wasn't odviously going to work against these things... first it started out beiing a single hole, but that hole branched out into many branches as the years went by, so I started looking at other diets, thinking that if SCD was working so well maybe I just needed to be on something more restrictive, so I started the Maker's DIet... I continued to feel better, but still Fistulas would not heal, finally they performed this new surgery on me called a Fistula Plug, which was supposed to close up the main branch of the FIstula, but that ended up not working either, so I've pretty much gathered that I'll have these Fistulas for the rest of my life you guys just can't immagine how painful these things have been for me.. It leaks out mucus stuff constantly, and the pain is just unbearable u just can't immagine.. because they won't close on their own, I have to keep going in to have them poaked from the outside in using this long 15 inch needle about once a month or so, around the very tender skin of the crack of my butt, then when the area heals over I have to have it poaked again, in the meantime BM's hurt like crasy unless I sit in a bath of water for 48hrs straight until the pain decides to stop, or I pray long enough and the pain decides to stop.. I've had these Fistulas now for 4 years, and I must say there probably the worst pain a man could ever experience, would ever want to experience, these things make me crawl on my hands and knees just about every morning just to get up the courage to goto work everyday, since doctors don't want me on pain meds of any kind I'm pretty much in cronic pain from these things anymoore but the doctors don't care, they just think I should be a man and deal with it I guess they just don't understand how bad this pain is, its not like a stomach pain or nothing, its like somebody stabbing you in the butt constantly I mean its just that bad, but yet I have to deal with it for I can't afford to be off work for even a day or I can't pay my bills basically... couldn't even when I was married, now that I'm single its even harder yet, nobody I know can live on that $600 a month they give yah, and thats even if I was accepted which is highly doubtful...

in the meantime, doctors put me on Remicade for the FIstulas... So far, the Remicade hasn't had very good success really... I mean, it works for about a week maybe 2, but then the pain comes right back again....almost as if the Remicade only works for 1-2 weeks then suddenly just 'wears off' suddenly.....strange eh? I know, I probably am forming antibodies against the drug thats probably what is going on, but the doctor said imuran is supposed to prevent that, but I don't think it is, least it doesn't seem to be....(shrugs)

anyway, thats my story, my wife ended up leaving me over these things, she just couldn't stand to see me in so much pain all the time, so I live my life by myself these days, without a single friend in the world it seems like, not even my family understands..

oh, and another thing, I was born with Rubella, or German Measles, I was born totally blind, and have been Legally Blind my entire life.. Never been able to drive a car... I hope to oneday try for my Bioptic Drivers license (a driving program for the visually impaired) but right now with my crohns and everything I just can't tollerate the pain enough to concentrate on learning to drive... I tried for awhile, and still have my lerners permit, but I kept drifting because the pain was so bad sitting I couldn't concentrate on learning how to drive, so until they get these Fistulas under control I won't be able to drive for at least a couple more years yet I am hoping..

anyway thats my dull boring life i guess..

take care,

Tom

Last edited by bubazoo; 05-31-2006 at 08:27 PM.
05-31-2006, 08:39 PM   #2
mikeyarmo
Co-Founder
 
mikeyarmo's Avatar
 
Join Date: Feb 2006
Location: Toronto, Ontario
Welcome to the Forum Tom.

It is awful to hear what you are going through now. All I can say is that if there are any people who have any idea what it is like to go through what you have, we are those people. Feel free to ask anything here, as we all will do what we can to help you.

And we are all friends, and we can all use one more I am sure, so please feel like you are one of the gang .
05-31-2006, 08:54 PM   #3
bubazoo
Member
 
bubazoo's Avatar
 
Join Date: May 2006
thank you mike

well, tomorrow I have another Remicade Infusion...so I will probably feel better for about a week maybe 2 before the infusion starts to weat off...LOL (sighs) oh well.. just seems silly to be on a $10,000 drug when it only works for maybe 1-2 weeks if even that... I also have flu symtoms overnight for some reason, goes away by the next day though, so I probably won't be on here again until Friday night.. I talked to the doctor about it, he said its normal, and that, he doesn't feel the need to give me anything for it so long as it goes away by the next day, and it does... probably just an imune resonse he was saying... its just that it happens every time, but oh well...

I don't feel anything when its going in me or anything, I just get this really bad flu, like, from 8pm on...seems to hit me as soon as I lay down for the evening, weird eh?

I work from 4am to 2:30pm M-F, and its already almost 10pm so its about my bedtime now

Last edited by bubazoo; 05-31-2006 at 08:59 PM.
05-31-2006, 09:15 PM   #4
mikeyarmo
Co-Founder
 
mikeyarmo's Avatar
 
Join Date: Feb 2006
Location: Toronto, Ontario
G'nite!

I hear that some short-term symptoms after getting a transfusion (like the flu) are normal for many, so it isn't something to worry about.
05-31-2006, 10:44 PM   #5
Donna
 
Hey bubazoo....welcome. Sounds like you have been thru too much. You definitly have found a whole forum of friends! We are here for ya...we have been thru it all in some form or another. So don't hesitate to just post what you want! We are here for ya!!

I also take Remicade. I also get the flu after each infusion. I take a double dose ($14000 of liquid gold as they call it, injected into my veins!) every 6 weeks. I also get major relief for about 3 weeks and then it tapers off. But with each new double dose infusion, the relief is lasting longer and longer. I have been on remicade for 2 years now. Used to be 8 weeks apart and a single dose. After a flare that landed me in the hospital again, they decided on double doses every 6 weeks. It has helped. I am also on imuran. Haven't seen much improvement with that. But it takes a long time for you to see results. It helps to maintain remission.

As for your fistuals. I don't have them, thank God for that. I heard remicade will stop them from forming, but wont heal the ones you have. I wish I could give you some ideas on it, but I can't. I also had what I thought was a huge hemmi (hate saying that...embarrassing as all hell...but I don't have a problem telling you what my poop looks like..go figure!). Turned out that it wasn't a hemmi but instead a Crohn's tag. They don't recommend removing them, since any surgery close to anything related to the digestive track will most likely start a flare. So, I have this lil country on my ass (pardon my bluntness)...for now. I will have it removed in the future. I hate it. It causes discomfort and sometimes pain, and it is just plain nasty. lol

Ahhh the joys of Crohn's. Well, take care, and come here often. You will find alot of friends here.

Donna
05-31-2006, 11:47 PM   #6
Kate
 
hey tom

welcome to the site, thats one hell of a story you have there, i have never experianced a fistular so i cant quite understand what you are going through but im sure you will be able to help those who do

best of luck
Kate
06-01-2006, 01:36 AM   #7
DannyB
 
Hye tom,

good to see you on the forums and look forward to talking to you at some point. Thanks for your story.
06-01-2006, 09:40 AM   #8
devildee(donna2005)LOL
 
Hi Tom

to the forum
06-01-2006, 10:09 AM   #9
Valentina
 
Hi Tom, welcome to the site, sounds like youve been through it all.
I really hope something starts to work for you soon. how many remicade infussions have you had? I dont have any fistullas, but it still took 5 or 6 remicades for me to notice any change worth mentioning.
I take Methotrexate with mine, Imuran (aza) just didnt agree with me at all.
there are a lot of people here to talk to about what your going through, hope that will help at least a bit, take care.
06-01-2006, 10:49 AM   #10
Jonny
 
Hi Tom welcome to the forums.All the best to you
06-01-2006, 01:03 PM   #11
Karen
FRIEND 4 1 & ALL
 
Karen's Avatar
 
Join Date: Apr 2006
Location: Ohio

My Support Groups:
NEIGHBOR !! I am sure that you will have a good time here with us TOM ... so jump right in and have a good time with GAMES & MORE so see you around the board !!
__________________



06-01-2006, 11:08 PM   #12
ladyB
Senior Member
 
ladyB's Avatar
 
Join Date: May 2006
Hi, Tom!
Welcome. I look forward to hearing more of your humor...
You sound like you aren't letting anything get you down, even if you have to crawl.. I've experienced that a few times...
Who needs people in your life who can't understand that this the disaese affecting you and it's not you yourself!
Hope to hear more from you.
06-02-2006, 01:15 AM   #13
rhiannonctr
 
Welcome Tom!

It sure sounds like you've been through a lot. I tried the SCD for a while and I lost a lot of weight (which was nice) but in the end I had flares anyway. I hope the Makers thing works for you. Sorry to hear about the fistulas. I have what my GI calls fistulating Crohn's myself, so I hear you on the pain. I've had a couple that have made it to the outside, but the majority of the them have been from intestine to intestine and intestine to colon (as my surgeon found out when he opened me up last year--apparently it wasn't very pretty or expected). I'm currently in surgery-induced remission, but my GI has me on Imuran to maintain and hopefully stop fistulas from forming. (I developed antibodies to Remicade very quickly, so that's a no-go for me.) I've had some success with high-dose antiboitics to close fistulas in the past. Has your GI tried Flagyl or Cipro? Those have both worked for me.

Good luck with your next infusion!

Kathie
06-03-2006, 12:59 AM   #14
bubazoo
Member
 
bubazoo's Avatar
 
Join Date: May 2006
Hey everyone,

Thank you all for your kind words

My GI put me on Remicade in Dec 2005 I believe, so I am guessing 6 months on Remicade so far.. I started taking Imuran a year prior to that. How do you know if your body is producting antibodies against the drug? because I believe thats what might be happening to me.. At first, the drug was working real well, but by the time I was up to the 8 week stage (about 2 months ago I'd say) is when I started noticing the drug only working well for 2 weeks at the very most, then tapers off and by the 3rd week stops working altogether it seems like.. I've also noticed symtoms of arthritis since I've been on this drug, but not too serious yet, just difficult to do heavy labor. I used to be able to lift 200 lbs over my head easy, but now I have to grab the frames at work in singles (30-40 lbs each) because I can't lift the bundles of 5 over my head anymoore like the other guys can.. My boss makes fun of me, he says I move like a 70 year old man, when I was transferred to a new department after being off on medical leave for awhile, but what he doesn't understand is thats not all my Crohns, because I am legally blind, I have trouble picking up on new jobs as fast as everyone else can, so I can do the job just not as quick, after a couple years that changes and I get really fast, faster then everyone else even, its just how it is with the disabled, but ya know employment places never want to understand that, all they seem to care about is their quota... Same with the women who have been in my life, all they ever seem to care about is themselves, both my ex-wives made fun of me constantly in public because of my poor eyesight, and crohns they just couldn't handle that at all..

Let me put it this way, the pain is so bad, I can't goto the grocery store anymoore and stand in line at the checkout... I have to get 1-2 items real quick in the 20 items or less line, otherwise I can't stand in line long enough to checkout a cartload of items like I have to get on grocery day, so I've been pushing around a wheelchair so I can sit in line instead of stand there... which is really embarrassing for a 35 year old man who looks like a 14 year old....(yeah funny story about that I'll talk about later) I've been cooking since I was 5 years old, and prepare everything from scratch now, so even alone my grocery bill is in the $60 a week range, which is pretty high for just one person, but the cranberry juice is $7 a bottle, almond flour is $10 a lb, cheese is $6 for 7 oz (since I have to have white cheddar which is hard to find, can't tollerate the yellow dyes or anti caking agents, and I have to drink fermented goats milk because I can't tollerate cows milk proteins)

Anyway, I don't mean to complain, I am normally a really silly person, don't take much seriously other then what I have to. LOL but these last 2 years have made me grow up faster then I ever wanted to... I'm not the same person I was even a year ago, mostly just having trouble coping with the chronic pain. I was going to ask my primary doctor if he would refer me to a pain management specialist, I think that would really help me alot... The trouble is, Darvocet works really well for the pain, even more so then Vicatin, but as I'm sure you guys know, Darvocet is a narcotic, and addictive, so I try not to take it unless absolutely necessary... My ex-wife kept begging me to take the medicine, but I wouldn't most of the time because I didn't want to become addicted to it, I would take it once a day at the very most.. I just, don't have a clue how to deal with this much pain on a constant basis like this, hardest part is sleeping I think, during the day I can keep myself busy to try and block out the pain, but at night forget about sleeping just can't do it the pain is just so overwelming.. I've gone to ER once or twice over the pain before, and they've given me shots of morphene to calm it down, but even shots of morphene in the stomach don't hardly touch the rectal pain, just seems weird that Darvocet works so well, but if I take it constantly I develop an immunity to it which is another reason why I don't take it more then i do, my doctor won't even prescribe it to me anymoore because I ask for it all the time afraid that I might already be addicted to it, and besides that it gives me constipation which is the last thing I need. LOL

as for me, I don't mind talking about any subject.. hemaroids, fistulas, colostomy bags, poop, nothing bothers me anymoore. hehe ya learn to laugh about it to hold back the tears

according to my rectal surgeon, he has tried everything but a routine Fistulotomy.. The reason why he is reluctant to perform a Fistulotomy on me, is because of where the main branch of the Fistula is located.. Its located around the spincter muscle on my right side.. If he performs that surgery, it would mean cutting the spincter muscle, which would mean TOTAL loss of control the rest of my life (meaning adult diapers rest of life) which at 35 is too young to have to go thru...so thats why regular Fistula surgeries don't seem to work well.. The Fistula I have is a cannal that goes thru the inside of the rectum to the skin.. Inflammation started there, which turned into a hole, which turned into a tunnel, which is like the bark of a tree that has since branched off into several branches... all around the spincter muscle area, which is why this is so surgically difficult to fix.

Anyway, I just got back from the rectal surgeon today, the Fistula plug didn't work so my surgeon doesn't have a clue what to do now, so he is having me seek a 2nd opinion from one of his other associates...
I was on Citpro and Flagyl (one at a time, and both together at one time) for over a year, and all those drugs did was give me diarrhea and induce flaireups, but he had me on them for over a year before they even attempted surgery.. Taking an antibiotic along with a probiotic helps a little, probably more then anything else... prednizone really closes them up, but my GI refuses to put me on that for some reason.. Last time I was on pred the Fistulas nearly closed entirely until the doctor tapered me off them, then they came right back as quick as they left so I dunno, I just don't understand why they just don't keep me on a low doze of pred if it works so well, ya know? I'll never understand doctors I guess.. Its like, this antibiotic they have me on now (can't pronounce this, AMOX CR-K er something like that) is helping more then the citpro and flagyl ever did, but he only keeps me on that for 1 week, just as soon as it starts to close up he takes me off it, so its been rather frustrating dealing with these doctors who only want you on medicine that actually works for such a short time, and medicines that do me more harm then good, for years at a time, its crazy, sometimes I wish I could just, run away, to a new town, new state entirely, ya know what I mean? (sighs)

anyway thanks for the kind welcome everyone

take care

Last edited by bubazoo; 06-03-2006 at 01:23 AM.
06-03-2006, 03:46 AM   #15
ElaineH
 
Hi Tom and welcome to the forum!

Sounds like you've been going through some kind of nightmare...I know where you're coming from with the fistulas..had them myself a long time ago. Every time you think they're starting to heal, they just pop right up again. My surgeon eventually performed the fistulotomy on me, and at the same time formed a loop ileostomy, which is just as well cos they cut the sphincter muscle and there is virtually no control in that area now.. so one day my loop ileostomy will have to be made permanent.

I know of other people who use the SCD diet and it works well for them, glad to hear it works for your crohns too!

Anyway, you've come to the right place for people to talk to, everyone here understands what you are going through..and your sense of humour is very welcome on the boards too!!

Elaine xx
Reply

Thread Tools


All times are GMT -5. The time now is 07:27 PM.
Copyright 2006-2017 Crohnsforum.com