Crohn's Disease Forum » Your Story » Another newbie.... Severe crohns suffer


08-04-2009, 08:32 AM   #1
CROHNS SUFFERER
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another newbie.... Severe crohns suffer

Hiya everybody,

ive joined forums before, but never thought id be joining one to discuss a lifelong disease, glad ive found it though, as its given me alot of info to consider.

Im on here looking for peoples opinions of whats going on with myself at the moment, as i was only diagnosed 5 weeks ago, im still a bit green.

a bit of history i guess.....

I was diagnosed with IBS at 15, never had any tests for anything else at this point. im 23 now and a year ago i went to my gp with a change, having diaherea 6 times a day, over the year lost 3 stone and went to toilet 30 times a day in agony.

i got a colonoscopy 5 weeks ago and this confirmed i had Crohns Colitis, an MRI 3 weeks later also confirmed i had crohns in my ilieum, stomach, throat and yip, mouth. lol.

I was put on presdisolone 5 weeks ago at 40mg a day, to be reduced by 5mg a week. I've seen absolutely no improvement on these at all, told my doctors this and they checked my bloods, and yip absolutely no improvement on the inflamation either. im on 1 tablet of omeprazole a day too.

The GI specialist said that because im not responding to the steroids and i have and i quote " an aggressive, severe form of crohns", its all getting worse pretty quick, ive to start infliximab tomorrow, which im crapping myself about to be honest and they've put me on PENTASA 2g a day.

I went to see the GI nurse yesterday as ive now got a really bad UTI, which i get all the time, but this time its worse and im in absolute agony. They now think ive got a fistula from my small bowel to my bladder, as my small bowel is resting right on it.

Its all a bit much really, I seem to have every side effect from every drug they've put me on. ive got moon face, acne, water retention, weight gain, hair growth, tiredness, lack of appetite,swollen tummy and insomnia.

Just wanted to ask what everyone thinks of what they've put me on, i know everyone is different etc. The nurse told me yesterday that if the infliximab doesn't get it under control then the surgeons gonna become my new best friend. which really scares me.

so now im currently on 20mg prednisolone, 20mg omeprazole,2g pentasa, antibiotics and about to start infliximab every 2 weeks

any feedback of anykind, much appreciated
08-04-2009, 11:31 AM   #2
fenway1971
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Hi CS,
Welcome to the forum. The side effects are perfectly normal for pred. But, they do go away. I was on it for 9 months and found the effects were gone within a month after stopping.

Haven't taken other drugs you mention other than omeprazole. Good luck...hope you find answers.
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08-04-2009, 12:47 PM   #3
CROHNS SUFFERER
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thats good that the effects go after about a month, sounds pretty vain, but the weight gain and the moon face are whats getting to me most! lol
08-04-2009, 01:40 PM   #4
Cookie
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CROHNS SUFFERER said:
i got a colonoscopy 5 weeks ago and this confirmed i had Crohns Colitis, an MRI 3 weeks later also confirmed i had crohns in my ilieum, stomach, throat and yip, mouth. lol.
Stupid question...I get mouth sores all of the time and I know that is the case with many on the forum...is this different than Crohn's in the mouth...I was just wondering...

BTW, welcome to the forum, CS...sorry you are having such a rough go of it. I think you will find this site very helpful...Good luck!
08-04-2009, 03:39 PM   #5
CROHNS SUFFERER
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hi shady cat, no its not, i just mean that the chrohns is all the way up my digestive tract(apparently). its not any different.
08-04-2009, 05:50 PM   #6
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hi CS, and welcome to the family. i hope the Infliximab and Pentasa do calm things down for you - many people on here have done well on these drugs. sometimes it's a case of trial and error with the drugs, some work for some people but not for others. i hope it doesn't come to surgery, but if it does, don't be scared. i've survived numerous abdo surgeries and not only lived to tell the tale, but had a much increased life quality afterwards.
08-04-2009, 07:15 PM   #7
Ms Cordelia
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My advice is take control of your health right now. Research EVERYTHING out there and do not rely on the Dr. to "cure" you. Before you go the surgery route get a 2nd & 3rd opinion. If you take out the diseased portion the immune system will just attack another area until you have nothing left.
My husband has been going through it for 7 years and we have learned this the hard way. He has a severe case too and no meds have been able to control his CD so far. Surgery is not an option for him since he has inflammation through out his digestive track.
Look into alternative treatments and try them. Check out helminthic therapy (see the Nottingham study). We had some success with this.
Be your own advocate and make sure you know more about CD than the Dr's do. Tell the Dr. what treatments you want to try. If they don't comply, change Dr. It's your body after all.
Good luck.
08-06-2009, 05:10 AM   #8
CROHNS SUFFERER
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thanks for all the advice, i had my first infliximab infusion yesterday. ive had alot of pain last night and cant stop going to the toilet today. hope it all settles dow quick. im on a really healthy diet now and im hoping this will improve things somewhat
08-07-2009, 11:42 AM   #9
SLee05
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Hi CS, I am new here like you. I am also your age. It sucks to be young and having these life long diseases. My problems are not as severe as yours, mine are just in my small bowel and maybe my stomach. What are some of your symptoms? I get nausea almost everyday and that is one of my problems. I don't mind the pain and the cramping, but when I feel like throwing up, it prevents me from going to work, school, go out with friends, etc. I see that your doctor has you on omeprazole, which is a ppi that stops acid production in your stomach. That is interesting because I am also on a ppi called acidphex. I have tried all the PPI's out there and acidphex works best for me I guess. Did the doctor diagnose you with GERD (acid reflux disease) too? Cause initially my doctor just said I have GERD, and later found out I had inflammation in my small bowel in the ileum. So I was wondering if Crohn's disease can mimic the symptoms of GERD and maybe thats why some doctors just think its acid reflux disease... or maybe we just have both? Anyways, best of luck to you and I hope you find some type of medication or natural herb that can help ease your pain.
08-07-2009, 04:45 PM   #10
cheeky
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crohn's sufferer, i just wanted to say hello and welcome to the board.

unfortunately i don't have much advice, as i'm kinda new to this diagnosis too... they're considering surgery for me as well... although it's scary, i just wanted to say maybe it'll be the best solution since you're not responding to the meds.

sorry you're having a rough time, best wishes and take care. keep us posted.
08-09-2009, 04:07 AM   #11
CROHNS SUFFERER
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Thanks everybody for your kind replys. SLEE- no i dont have gerd. i told my doctor that whenever i eat, i get alot of pain from my stomach, then feel quite nausiated and they put me on this.

Ive not had a great day yesterday. i had a really bad migraine, which i think might be due to the infliximab, cause i dont usually get these. and i had diaherrea and excrutiating pain last night. i actually thought i had a blockage last night, as id never felt pain like it. but it eased after about 20mins?

does anybody have any bladder problems, sorta similar to mine? this is the thing thats causing me most bother at the mo. its like a really bad UTI or cystitus, but nothings taking it away, im drinking lots and it seems that when my bladders half full, this is when its at its best, but as soon as its full or emptys, im in agony, with it spasming, needing to go to the loo and it actually continuously emptys itself of its own accord every 2 seconds, like it cant handle any urine at all?
08-09-2009, 10:35 PM   #12
SLee05
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CROHNS SUFFERER said:
Thanks everybody for your kind replys. SLEE- no i dont have gerd. i told my doctor that whenever i eat, i get alot of pain from my stomach, then feel quite nausiated and they put me on this.

Ive not had a great day yesterday. i had a really bad migraine, which i think might be due to the infliximab, cause i dont usually get these. and i had diaherrea and excrutiating pain last night. i actually thought i had a blockage last night, as id never felt pain like it. but it eased after about 20mins?

does anybody have any bladder problems, sorta similar to mine? this is the thing thats causing me most bother at the mo. its like a really bad UTI or cystitus, but nothings taking it away, im drinking lots and it seems that when my bladders half full, this is when its at its best, but as soon as its full or emptys, im in agony, with it spasming, needing to go to the loo and it actually continuously emptys itself of its own accord every 2 seconds, like it cant handle any urine at all?
Hi CS, I have the same problem with you regarding the eating part. After I eat I feel pain in my stomach, and I feel like I want to through up. I also get headaches but mine is not from medication. I just get light headed a lot. I don't have any bladder problems though. ARe you on any medication for you UTI? Maybe its a fistula? i'm not sure though
08-10-2009, 02:07 AM   #13
CROHNS SUFFERER
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SLee05 said:
Hi CS, I have the same problem with you regarding the eating part. After I eat I feel pain in my stomach, and I feel like I want to through up. I also get headaches but mine is not from medication. I just get light headed a lot. I don't have any bladder problems though. ARe you on any medication for you UTI? Maybe its a fistula? i'm not sure though

my GI nurse thinks its a fistula, im waiting on a urology appointment now to get a camera into my bladder. seriously hope its not, as i know whilst my crohns is this active, they wont do anything about it. what can be done for bladder- small bowel fistulas, if it is this?
08-10-2009, 08:21 PM   #14
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Just throwing this out there - maybe get checked for Interstitial Cystitis.

I got diagnosis after diagnosis for UTIs, but no bacteria EVER grew from the samples they took. Got checked for that, and what do you know?

Good luck!
08-11-2009, 03:55 AM   #15
CROHNS SUFFERER
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What is interstitial cystitis? is it like normal cystitis? i used to get this alot as a little girl
08-11-2009, 08:21 AM   #16
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IC is a SOB!!!!!

Check this out:
http://www.ichelp.org/AboutIC/tabid/209/Default.aspx
08-12-2009, 02:54 AM   #17
CROHNS SUFFERER
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thanks santos, thats given me something else to suggest to the docs. i went to see the GI doc and nurse yesterday, as i wasn't feeling how i thought i should. ive been in alot more pain than i've ever been. even before starting any meds! i was feeling really upset yesterday, as the pain, diagnosis and just generally dealing with this got a bit much. Its been a week exactly since the infliximab infusion, and i told the nurse and doc that im feeling worse not better. i got quite upset whilst telling them this as i was scared that they were going to say that the infliximab and steroids weren't working. but they tried to reassure me that some people, just dont see a difference with infliximab until after the second infusion.

also i told the doc i didn't want to be on the steroids anylonger. thats been 7 weeks on pred. and ive been on a constant 20mg dosage for 2 weeks. since i was told to stop tapering as it wasn't working. The doctor basically said i have no choice bar to be on them, they have to get the inflammation under control and they have nothing else to try. so im on them indefinitely.

but on a positive note, ive took control of my diet and ive now been 4 days without any cigarettes. which is killing me in itself! lol im juicing everything in sight and i must say i think this is improving my energy. and im feeling quite good this morning, despite my worsening bladder pain!!!!!
08-15-2009, 11:53 PM   #18
shazamataz
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Good job on the stopping smoking!

I hope you can keep it up. It's one of my battles at the moment as I KNOW I have to stop but it's hard when on Pred at the same time as it seems to be the only thing which calms me down a bit.

How have you found the quitting and any tips on how you have done it?

Shaz
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08-16-2009, 03:23 AM   #19
CROHNS SUFFERER
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Hi shazamataz, ive been 12 days without a cigarette! i did have 2 sneaky puffs of a friends cig at a party last night, but im not counting it. i told myself i could have two puffs of it as i was at a party, not eating drinking or smoking . im really really missing cigs as i actually enjoyed smoking and it calmed me down too.

it also really helped my pain? funny isn't it, when it should have been making it worse.

my pain from my small bowels getting worse............ got another 5 days til my second dose of infliximab
08-19-2009, 09:50 AM   #20
autumn_rose
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*virtual support hugs* I'm so sorry that you're so sick. We're all fighting our respective battles, some doing better than others- and really, what else can we do?

I was recently told that I might have to be put on infliximab as well, if it turned out that I had pancreatitis due to Imuran- but the blood work showed that I don't have it, so I'm to ontinue on my oral imuran, with an increased dose, and be slowly taken off y prednisone. It seems that your doc wants to jump straight to the IV treatments, which may be neccesary, since your condition is so severe at the moment- but you should inquire about imuran and other immunosuppressants, to see if it may e a possibility before jumping the the IV TNF blockers. Ask around, read everything you can, and see more than one doctor for second opinions, if you're not comfortable with the care you're currently receiving. You are your own best advocate for your health care. Make decisions carefully, but try to get it under control ASAP. My personal opinon is not to let them perform surgery unless there's no other option, as it is dangerous, not a permanent cure or solution, and since the crohn's can come back, and there's only so much they can remove through surgery, eventually there won't be anything else they can do. So I intend to avoid surgery for as long as possible, and suggest the same, unless, again, there's no other option.

As for the fear of the medications, I am also scared of these things (and I imagine that most people are), but this is the logic I run through: Considering quality of life. If I don't take my meds, I know for a fact that I'll be in severe pain and be very sick, and probably end up dying a lot sooner than if I take my prescribed medications. Yes, there are always risks with meds, but again, they're risks- not facts- but it pretty much is a fact that if you don't get treatment, you'll remain sick. It really sucks- but what option do you really have when looking at it that way?

I've experienced some rather cruddy side effects from my prednisone treatment as well. I've been on 40mg a day for months now, almost nearing a year, in fact. I have the moon face, acne, developing the "buffalo hump" now, round tummy (I have gained weight, but I was underweight before, so this is a good thing- I'm just not happy that it seems to all go to my tummy area), a little bit of increased hair growth, increased sweating, insomnia, and some strange anxiety habits like biting my nails, picking at things, and biting skin on my lips. Sometimes I'm really hungry, other times I don't want to eat at all. And I often feel depressed and lethargic. My comfort is that these things will go away when I come off of it, and that my family still loves me, even though I'm a puffy mess sometimes- haha.

Sorry that I'm not of more help- although feel free to PM me with specific questions, and I'll do my best to answer or find answers (I'm currently reading two more books about IBD). Again, I think you should ask about imuran and similar drugs, and see about getting a couple different opinions, especially before having any surgery. Hang in there! I really hope things get better for you, and I will "pray/meditate" for you

Best wishes.
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