Crohn's Disease Forum » Support Forum » Kinda upset...

07-06-2006, 09:18 AM   #1
kinda upset...

Hey guys I just wanted to share how I feel. I am running out of options. In the past year I have tried like every med in the book and none have worked for me. Asacol never worked because I was taking six a day, but I was passing them whole frequently so obviously they were not even dissolving in my system. They also contributed to me getting pancreatitus. So when I went into the hospital the first time, the drs argued about it some saying that asacol could cause pancreatitus and others said it couldnt. They dinally decided to take me off, but they started another ASA drug called Colazol. This did not set well with me because it is asacol in capsule form and they had me on 9 of those a day, and I even asked the dr. if Asacol caused me to get pancreatitus dont you think Colazol will to? and they were all nooo noo. well they let me out of the hospital after 8 days because they were havin problems with me and IVS. well about a week later, I began throwing everythign up again and they checked my levels which were higher than they had ever ever been before. So they took me off colazol and a while after the levels went back down. It sux,becuase the colazol had actually worked for me...but back to that later. They had also tried Canasa which is a supository and they made me do it twice a day, but it didnt work either. So they put me on 20 mgs of prednizone to stop the frequency and bleeding for the time beeing. But every time they would start to taper, I would get to 5 mgs(this has now happened like 5 times recently) and I would begin to bleed again. Well a few weeks ago I began having horrible diarrhea and bleeding like no tomorrow and the 20 mgs of prednizone had obviously lost the affect. Well the dr said we could try the Colazol again, so with some hesitation, I did. Well a few days later I felt so sick and I began yet again with Pancreatitus symptions, doubling over in pain and throwing up. So i spent that whole day in the hospital and luckily they didnt make me stay over night but at anyrate I knew I wouldnt be doing colazol again. SO the only option I had left was The Rawaissa Enema which I was NOT happy about at all. But I thoguht well if this works at least Ill have remission and itll be fine.Plus convincing from my boyfriend that I needed to help myself helped too. Well I did it and everynight as I layed there(u have to lay for at least 30 minutes afterwards) my stomach would hurt worse and worse. Well a couple nights ago my stomach seriously felt like it was exploding and I threw up and layed there holding my stomach alll nite. well I called the doctor who told me I couldnt take that anymore and they ,since Im not getting any better, Upped the prednizone to 40 mgs. I just went up and cried. I hate prednizone and even tho its the only thing that works idk I just hate it. My doctor does not want me to take it and niether does my family. Well the other problem is my parents say Im about an hour away from the hospital. I mean just in the last week and a half Ive lost some weight and Im gettin weaker...Well since Im on prednizone that could be a problem if I was hospitalized. I cant take it threw an iv because I had a horrible reaction to it in the hosptial. My whole arm swole up and my body turned red and I threw up to the poin that i threw up blood. I also had a reaction to morphine which Im not alowed to take anymore. SO with all that said I began thinkin about surgery the other day. And I think that could b a good option for me. I mean obviously my body hates medicine. but idk. I mean I am goin in next week to consult with my doctor so I guess I will have to wait and see wat she says. But at this point I just need new options. Because Prednizone is not what I consider a good one. But yeah just needed to write all that out.~Jen
07-06-2006, 10:02 AM   #2
Hi Jen, Im not sure about your history (CD or UC?) but I also had problems finding meds that worked for me.. not even pred made a dent. the only options I had was to go up a level of drugs into the immunosupressants. (sp?)
I tried Imuran (aza) which did nothing.. then went up to methotrexate shots.. also nothing.. but when I had my 6th remicade infussion. finally the bleeding stopped. Im on mtx and remicade now, and the keep me mostly under control.
maybe you need to talk to your DR about what the next step can be for you. pred isnt a long term answer for anyone I wouldnt think.
good luck. and I hope you find the right mix of drugs for you soon. sounds like you need a break.
07-06-2006, 03:35 PM   #3
Hye Jen,

It's not easy having to wait around for sommit that works in controlling the symptoms but be patient and persistent with the docs and they will continue to try other things that will be able to help you out eventually.

All the best.
07-06-2006, 07:01 PM   #4
I am sorry to hear you are having a rough time of things, Jen. Sooner or later they will find the right combo for you.

Remicade works wonders for most people. I also was on methotrexate, but had too many side effects and it wasn't working. I am on a double dose of Remicade every 5 weeks, and higher doses (200mg) of Imuran (high dose due to my weight). It finally seems to be working.

Altho Prednisone and its side effects suck, BIG TIME, I do have to say without it, I don't think I would be here writing in this forum. It saved my life. The side effects do suck big time, but they do go away after you are done. Like you, weaning for me was horrible, and I had to stay on 5 mg for 4 months before I could finally get off of it. It does help me to stop the bleeding and inflammation tho. I would talk to your doc about the next level like Val said...there is so much out there they could be trying before surgery.

I wish you the best of luck, hang in there. You will soon see the end of the tunnel!!

07-06-2006, 09:31 PM   #5
sounds like you have had a rough time, sorry to hear it, i know how it feels also, there's no med i haven't tried now so only option is try remicade again..
07-07-2006, 05:26 AM   #6
((((((((((((((hugs))))))))))))))))) i hope they find something soon they will try everything before surgery xx
07-07-2006, 08:48 AM   #7
They really hate trying new meds with me because each time they do when they dont work I just end up getting worse. And being under eighteen also makes a difference too i think. Thanx for all yall support

Btw Valentina I have UC. lol
07-07-2006, 05:40 PM   #8
hey jen

sounds to like you have made your mind up already and i say if thats what you want go for it if you can get relife from it

all the best
07-07-2006, 10:55 PM   #9
Thats the problem...My mind isnt made up...I have no idea wat to do! the past couple nights i have layed in pain all nite...severe pain in my stoamch like i have never had before.ughhhh sorry i dont mean to sound like im complainin i just feel bla! haha
07-08-2006, 02:32 AM   #10
well you should talk to your speicalist about all your options and what the pros and cons are. Then you just have to make your decision but to be honnest if i have uc and not cd ild be keen for a j pouch if nothing else worked. So check your options and make an educated decision.

Best of luck with that hun
07-09-2006, 02:13 AM   #11
Hi Jenni

Good luck finding the right combo of drugs, sommething will work for you eventually I'm sure.

I know it's difficult but try not to let it get to you. (I know thats not easy when your in agony all night!)

07-09-2006, 08:25 PM   #12
ahh i kno! and yea idk why none of the drugs have worked so far or if they have they have caused pancreatitus. or some other crazy thing. grrrrr i just need a break! ahh!!!lol and now they have upped me to 40 mgs of prednizone and im havin lots of aches and stuff. omg and im gettin huge bruises all over my legs i mean like really really big ones and idk why and im in soo much pain.ahh! haha but ill b talkin to the dr this week within a couple of days so maybe ill figure someting out.
07-13-2006, 03:54 PM   #13
well. I will be consulting a surgeon sometime within the next couple of weeks. the doctor basically told me i have like no options anymore. she has been in this field for like 25 yrs and said shes never had someones body reject so many medicines-im thinkin greeaaat i just have to be a freak. but ill be most likely having my colon removed. soo yeah just an update
07-16-2006, 07:54 AM   #14
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario

No matter how you feel, you are not alone. There are many people who just cannot be treated with any medication, and it is not uncommon for surgery to totally improve a persons condition. Surgery was definately for me the best option, and has greatly improved my quality of life. I feel normal again now, and suffer no symptoms. Surgery is your chance to be healthy again, and you should embrace it.

Trust me, what you are going through is not some totally weird thing. No matter what your doctor thinks, there are many people who nothing will work for them, and have surgery as there only option. I was in a stage right before surgery where nothing would help me. If you are in that stage, you should realize that there is nothing that can be done, and that surgery likely is the best option.
07-16-2006, 09:12 PM   #15
thanx mike! i feel alot better about it now! plus i think itll b so much better cuz no more prednizone! haha that stuff messes me up so bad im so glad i wont have to take it. anyway i call tomorro to set up my consultation and ill go from there. maybe ur right and this will b a turn for the better!
07-17-2006, 07:47 PM   #16
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
Glad to see you are more optimistic now Jenni. There is no reason to get down on yourself or upset about how things are going, as that will not help anyone. You have every reason to believe everything will work out and should continue to KNOW that you are working towards a healthy you again.
07-18-2006, 03:14 PM   #17
Jenni, I know that my surgery took me from wholly incapacitated to completely in remission. While I know we all try to avoid surgery if possible, once it's time, it's time. I wish you much relief from your surgery.

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