Is there anyone like me?

[kello82]

is there anyone like me?

hello everyone!
i am 18 yrs old and was diagnosed with crohns 10 yrs ago. through the past 10 years i have been through every medication-pentasa, rowasa, methotrexate, asocol, colazol, remicade, humira and of course prednisone. at no point have my symptoms gotten under control, and my disease seems to have steadly gotten more severe. i have dealt with many fistulas, and 2 years ago began a battle with a nasty peri-rectal abcess that refuses to go away. inflammation extends to my mouth and my cheeks are swollen so that people think im on prednisone but i havent been for 2 years! and most recently i have developed horrible joint pain and swelling from inflammation in my joints as well as a rash on my lower legs called vasculitis-an inflammation of the tiny blood vessels. all of this from the crohn's! my doc considered starting me on the new drug cimizia, but seeing as i never responded to the other drugs like it, there wasnt much hope. i have seen doctors in philidelphia, boston, yale, and cleveland and the recomendation from all of them is a permanent ostomy. i am 18 and there is no way that i am letting this disease claim my colon just yet! ihave been on the specific carbohydrate diet for about 2 months now, and have seen improvement in some ways, such as my facial swelling and hemoglobin, but the joint and skin problems have just recently begun. due to the infected abcess, i had to stop all anti-inflammatories, so now i am taking colazol, cipro, flagyl, prevacid, and celebrex. i am so ready to get over this thing and live life as big as i want to
so PLEASE is there anyone out there with a rather advanced case of crohn's like me? i really need some support/advice as doctors no longer know what to do with me! thanks guys!

 

[jed]

hey kello,

i had it pretty bad to begin with, but damn, you've gone through some hell..... wow!

i eneded up having my large intestine removed (drugs were going no where for me as well). surgery was the best thing i even did for my health (small/long intestine was joined striaght to my colon so no bag yet)

best wishs
jed

 

[Guest]

hi Kello

i would say.. weigh up the pros & cons of the surgery, before you close your mind to it. do the doctors think that by removing the affected bowel, your other symptoms will recede? if so, honestly if it were me, i would have the surgery.

i haven't had all the symptoms you have, but have had many of them. i had extensive surgery many years ago - it gave me my life back.

i'm not trying to promote surgery over meds, but i just wanted to give you the perspective of someone who has lived to tell the tale

 

[CookieCat]

Hiya Kello,

I'm sorry to hear you've had such a rough ride of it. I'm only new to my diagnoses but not new to the symptoms, including joint and bone pains and muscle and nerve damage too. I also get lots of very sexy (NOT) rashes too. I am still struggling to get it under control and in hospital now as I type but there's lots of things they haven't tried with me yet.

I know it's scary to consider surgery but like the others have said weigh up the pros and cons. If it gives you better quality of life it's got to be worth it. Just think you have coped with everything til now and gotten through it - a lesser person wouldn't have.

I'm dead scared about the possibility of a colonscopy too (although it hasnt been mentioned, apart from when i went into surgery last year and I was in too much pain to care much then!. But I have a cousin who has had one and she said it has really been worth it - it has given her her life back. She doesnt have to plan even basic trips out around hospitals and can travel to visit her daughters now and she is in much less pain. She doesnt have crohns - she had a major blockage and her bowel died, but it's still the same sort of thing.

You are obviously a really strong young woman kello. I take my hat of to you and I know that you will cope with whatever you decide. Dont give up on them finding an answer either - they have new treatments every day coming up. Have you looked into the worms thing? I dont know much about it myself, but a nurse here mentioned it to me and said that it was new and controversial but some people with crohns have found it worked miracles. Maybe some of the others here have heard about it? Or you could try googling worms and crohns i guess...

Take care and stay strong. Keep posting - I find this place so helpful and I think you will too.

Love,
Cookie

 

[kello82]

thank you all for your thoughts! it is so nice to have so much input from people who have been through these things.
i think i am having such trouble accepting the idea of an ostomy because im afraid of it not working! its very reassuring to hear that people have improved their quality of live with an ostomy, but i have also heard from those who wish that they didnt do the surgery and im afraid of being one of those people. i guess this fear is backed by the fact that all treatments given to me by doctors so far haven't been right for me. but i do see how it could turn my life around. ive had a lot of time to get used to this idea as an ostomy was first recommened for me a few years ago, but i still get stuck between the good vs. the bad. blah.
Cookie- i goolged the worms! so gross! but if it helps then hey, why not? lol. i am looking at possibly taking part in experimental treatments. i more recently 18, so studies werent an option for me before.
i am going to see a team in NYC at mt. sinai hospital in a few weeks. hopefully i'll get retested and looked at all over again to see exactly what's diseased and then see what all of my options are. maybe they will have some good studies going on for new stuff. like worms, haha
Pen- you said celebrex is a no no for crohns? why is that? my GI didnt say anything about that....
thank you all again for everything -kelly (but you can keep calling me kello )

 

[CookieCat]

Hey Kello (yeah, I like it too - it's like a cross between Kelly and jello lol),

So glad we have helped. Even if we haven't exactly been where your at right now, we can all relate i think.

Yeah I googled worms and crohns too and it does sound gross! But then so are ostomies and so many things to do with this crappy disease. Like you said, if it works.... why not give it a try? Anything is worth it if it gives us back a life hey?

If you had an ostomy, would it be for good? I know sometimes they do it just to give your bowels a break and it helps heaps. I know exactly what you mean about trying to get used to it but being stuck between the good and the bad - that's how I feel like with the TPN.

Hope so much that they come up with answers for you. I know we aren't supposed to compare and stuff like that but i feel bad for moaning so much when I know you've been thru so much at such a young age. But it also helps me to know that you have because I know I can get thru my stuff to if you can get thru yours.

Take care babe.

Cookie

 

[kello82]

Cookie, i love how you called out the jello right away! hahah! seriously thats exactly what it is- i love jello and my names kelly and so pple are like KELL-O!
yes, the ostomy would most likely be permanent. the surgeons ive seen have said that my chance of recurrece is pretty high since the inflammation has shown up in more than one place, so to reconnect after the ostomy would just put me back on the same road. my disease has been mostly in my lower colon/rectum area so its not even an area that they can really remove! casue its all like, connected to your butt i guess? haha hard to explain.
what is the TPN treatment you're on? I've heard of it but don't really know the details, is it to give your bowels a break? I've also heard of the Elemental diet and i thought they were the same thing but i'm not sure.
thank you so much for telling me that my story helps you with yours. i have never been realted to by someone like that and it makes me very happy that by talking we can share hope and confidence that we'll get through this! and keep on moaning and complaining! lol crohns sucks all around, no matter how it affects a person, and i think we all reserve the right to whine sometimes.
P.s. i love that your username is cookiecat! i love kitties and have 3 of them and i LOVE cookies! so much that people give me cookies for like, a birthday present haha
keep on cheering people up, you're good at it
kello

 

[RHOV]

i don't think i've said hi yet, so hello, kello!

if you're looking into experimental treatments, i think the worms would be something to consider. a lot of people also swear by the scd or certain herbal supplements.

 

[CookieCat]

Hello there, Kello-Jello,:tongue:

I am so glad that I helped you a bit too and managed to cheer you up. I feel like such a miserable grouch at the moment so it's good to know that the 'real' me still comes thru it all.

That's hard that the ostomy would probably be permanent. But... sorry I don't know much about it all... could you have one to see if it helped and you can cope with it, and if not then get it reversed later? Even if it gave your bowels (and you!) a bit of a break, that would help wouldn't it?

That's the idea of TPN. I am not a real expert at it - only just started. But Mini Cooper (Cassie) was on it for 4 months and made a video about it. There is more info in the thread I started here "New here - Anyone else on TPN"
http://www.crohnsforum.com/showthread.php?t=4480
including the link to Cassie's video (or maybe it is in her Story.. not sure). But the basics are that TPN stands for "Total Parenteral Nutrition" and it is a feed that goes directly into a vein thru a special PICC line. It means that you don't have to eat, so your bowels can just rest a while and get a chance to heal. Also in my case, it is to build me up and help me regain weight because I am so underweight right now.

It is like the Elemental drinks, but as the drinks are still oral your bowels still have to do a bit of work. With TPN there is no work to do, so it's like total rest. The added bonus of TPN over elemental drinks is that you don't have to swallow foul stuff LOL!

I really hope that you find something that can help you. You've had such a crap time of it, you deserve a break. And thanks for saying its OK to whinge -it is just hard to deal with sometimes and everyone has there breaking point and I reached it yesterday. But I'm doing better today.

And yeah - like I said some other place, 'Cookie Cat' comes from the fact that my first word was "COOKIE" (like Cookie Monster)... but I used to meow like a cat if I wanted a cookie LOL! I also have cats and love 'em. Sad thing is I can't eat most cookies now - on a gluten and diary free diet. I've found some cookies that I can eat, but they don't taste as good. My faves used to be white choc chip cookies with milk... yummmmmmo! Kinda off the list now though!

Love,
Cookie

 

[kello82]

to answer your question about the ostomy, yes ive discucssed the option of just doing a temp and then reconnecting later with docs, but they always say things like "we might not be able to do a resection" "we might have to remove your entire colon" etc. i guess im just so nervous about having it be permanent when i didnt plan it you know? but i guess that has happened to many poeple and they didnt have any other options at all
yeah ive been on TPN in the past too, but not as a treatment really. kind of just an extra thing to help during some hospitalizations when i had a picc line anyways. are you gonna have to go home with your picc?
ahhh my goodness, COOKIES. im also on a diet where cookies are a no no. im following the specific carb diet which is basically no starches,sugars, or carbs other than fruit. theres recipiesfor cookies with nut flour that are kinda decent, but nothing can take the place of an oreo. double stuf. mmmmm i am drooling for one.

 

[kello82]

so tommorow i have an appt in NYC at mt. sianai.

ah. i am super nervous and i dont know why.
i think probably not much will come out of it, its more of a consultation and to set up a colonoscopy, and barium tests and stuff. believe it or not i havent had a colonoscopy for 9 years! probs not so good lol

ooo feels better to have let out my fears thanks guys!

 

[CookieCat]

Hi Kello, starting to run outa steam now but wanted to say I hope it goes well tomorrow. I hate colonoscopies and I'm really glad my gastro doc isn't wanting to do another one just yet but instead run other tests.

The idea was to go home on the TPN, but because I've had probs (see my thread under "Treatment"), I will probably have to stay in for it. Major bummer!!!

Sorry I make you hungry every time I post LOL!We can just dream on, hey?

 

[ladyB]

Hi kello,
Whoa! You've been through the wringer already. Unfortunately the only thing I have in common with you is being DX'd at such a young age.
I hope all goes well with the doc and the colonoscopy.

 

[kello82]

thanks girls you both brought a smile to my face.

 

[TammySue62]

Hello kello

So sad to hear your having such a ruff time with this roller coaster of a ride disease.
I have been there as well but My time has ran out.Had this disease for like 3 decades now. My Gi says I need the ostomy now.
Like you I too have herd the pros and cons about the stoma, bag stories.I am still praying to keep my bowels in tack and keep on fighting this.
I have the bad luck of the Irish sorta speaking.
I have been on the TPN bag twice in my lifetime tho and can give you my advise on that.
It did work well for me the first time. I was down to 80lbs and could not hold no food in me at all.
So they offered this to me to like you said to settle or rest ur bowels .
I was on it for 8 months gained 50 lbs also and felt great.
Then the second time round was short lived 6 weeks tops my liver couldnt handle it this time and had to discontinue feeding myself via by tube.

You could also try the BRAT diet (bananas,rice,apples and toast) this settles down the big "D" for me.
Also have you tried questrum? Its a powder that you drink mixed with water.Tastes like orange sand.

Hope this bit of info helps you out. If you have any more questions just fire away
.I will try my best to answer and help you along your journey with this roller coaster ride.

 

[DustinK]

Hey kello82. I've gone through similar things as you because I'm also young (only 23) and I was diagnosed with Crohn's when I was 13. I've also got a very severe case of it and I've been on every type of medication available for it. I used the get the leg sores really badly and still have a bunch of scars on my legs from them but I only get them now when I'm flairing really bad. About 2 years ago I had to have my first surgery and had about half of my colon removed and had an ostomy. I had been doing really good after that surgery until a few weeks ago when I ended up starting to flair really badly again. I ended up in the hospital again and almost had to have surgery number 2 but luckily things kinda cleared up. I just started remicade and it seems to help a bunch so hopefully I'll be flair free for a while. But if you ever wanna talk/vent/whatever lemme know. Hope everything goes well for you!

 

[CookieCat]

Hiya Kello-Jello, I wanted to tell you about an experience I had this morning. When I went to have my shower there was a bit of a bad smell like someone had just used the toilet. But then I spotted a colostomy bag in the bin! Nice hygene standards hey? It is a gross-out I know, but...

On the positive side, it actually didn't smell that bad! I've smelled a lot worse. And what I saw of the bag wasn't as gross as I imagined it either (not that I checked it out real close lol)!

So I just wanted to tell you in case the worse does come to the worse for you. It wouldn't be the end of the world... and if it meant an end to your pain and problems or at least made it better and you got more of a life back, it might not be so bad after all.

I know I'm just saying this hypothetically cos it's not me who has to consider it just yet, but I thought my experience could help a little. I'll definitely be praying that it doesnt come to that for you tho. (hugs)

 

[kello82]

thank you everyone for your messages!

after my appt in mt. sinai, im glad to say i feel much relieved. first of all the GI
is great he is such sweet guy and so understanding and appreciative of his patients. he is the most down to earth doctor ive ever been to. there are two drug studies at the hospital down there that im a good candidate for, and he also thought that Tysabri is worth a shot. we also did discuss and ileiostomy, and he gave me much better feedback than other docs that it would be reversible. everyone else didnt have much hope!
bad news is that i have lost so much weight recently. im 99 lbs, and was almost 120 in august. i decided to stop the Specific Carb Diet that ive been following and just focus on getting as many calories as possible. hooray for Boost! lol

Tammysue- im sorry that youre facing the surgery too its so hard to commit to it when it could be so permanent. i hope that you can find what is going to make you feel better.
oh, and what does the questrum do?

Dustin- im sorry to hear that youve had a rough time of it too. do you still have the ostomy or did you get the reversal surgery? im glad youre finding the remicade helps though! it didnt bring me remission, but when i was on it, i had the most relief than at any other time.

Cookie! youre sounding more energetic and thats great!
lol thanks for your story. it is nice to hear that it didnt look as bad as you imagined it would.
i think i slowly warm to the idea a little at a time. cause if it makes me feel better than of course its worth it! i definitly am more open to it than i was at first 3 years ago.
thanks for thinking of me

 

[merrywidow]

hello kello, i have a illeostomy and if i knew how much it would improve my life i would have opted for surgery many years before. barring the first 3 months after surgery, my life is normal and i can go shopping without mentally thinking where the nearest toilet. its great. the pouch dnt get in the way of everyday life. have a word with the stoma nurse. she will show some examples.
sharon xx

 

[DustinK]

i've still got the ostomy but i'll be able to get it reversed soon. just working on getting it approved with my insurance.