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Crohn's Disease Forum » Ulcerative Colitis Forum » Having an absolute shocker!


01-30-2012, 04:53 PM   #1
jaggartini
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Join Date: May 2011
Location: AUSTRALIA
Having an absolute shocker!

Feeling very down over the past week. Long story short I flared last Nov, hospital visit, haemorraged, blood transfusion etc. Luckily no surgery then.
Have been on Prednisone since then and it's doing my head in. I have been on and off Pred for 8 years and my GI has actually said to me that this is pretty much my last time he wants to use it due to the long term side effects. I'm really feeling being on it this time round.
I reacted to Cyclosporin so if I did flare again (if I ever get better) then I have no idea what they'd use.
Anyhow, I've decided not to go down the Methotrexate path as I'm so over having toxic medications running through my system.
The Pred this time round has given me the shakes (I'm still shaking even down to 15mg a day), indigestion, moody and break through bleeding which I've never had before. Have any women out there had this?

I've spent the past few weeks speaking with my GI about the possibility of surgery. Fully removing the large colon and "hopefully" having a J-Pouch down the track. I saw a stoma nurse for the first time last week just to discuss things as i will need a bag for 3 months before the reversal. Well..... i broke down, it was very confronting for me . I'm very conscious about the way I look. I know this is something I just need to deal with in time; I still have my life right???????

However there is one more spanner in the works, a colonoscopy 2 years ago showed 3 small ulcers in my small bowel which I've never had before. My GI said this could be something called "backwash" as i was flaring so badly and my UC may have just gone into the small bowel slightly OR it could be an indication of Chrons. If it is Chrons then they won't do the J-Pouch. I'm having a Colonoscopy next week to see what they come up with.
For the whole 8 years they have always suggested UC, it's just these 3 small ulcers that are making everyone wonder and making me stress.

"IF" it is Chrons then I have one last option with drugs which is to apply to the Australian government for Humira. We have to prove to them that it is Chrons and not UC as they won't give it to UC patients. Great that my medical condition can be in the hands of the government. (rolling eyes)

So I'm in limbo I guess until next week and very stressed. Someone give me a crystal ball!
__________________
Ulcerative Colitis since 2004

Currently taking:
4 x 1g sachets Pentasa (every morning)
5mg x Prednisone
Probiotic Daily

Allergic Reaction to Imuran May 2011.
Reaction to Cyclosporin Nov 2011.
I've said no to Methotrexate as it sounds toxic and GI doesn't like using it.
Next stop may be surgery.

Had a major flare last Nov, hospitalised where I haemorrhaged. Ended up in ICU and blood transfusion.

.
01-31-2012, 05:38 AM   #2
Ian
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Join Date: Feb 2010
Location: London, UK
I empathise jaggartini, my colitis is 'unclassified' at the moment (don't know if it's UC or Crohns colitis), and will likely remain so, at least until my colon is on a pathologist's slab somewhere (and even then they might not be able to decide). So surgery is a big gamble - not just because the possibility of a j pouch is unknown but because in my case there has never been any small bowel involvement and I want to keep it that way! Removing my immune system's favourite punching bag might encourage it to find a new one. I'm told the chances of this are quite slim, but if it happens to me those good odds will be meaningless. Looks like we're in very similar positions so I know I you feel.

Can I ask why you're opposed to Methotraxate but willing to try Humira? (if you're granted it). Is it because you reacted to Imuran and Cyclosporin? I know Metho is an old school drug, but a combo therapy of both of those meds has proven to be very effective for many people.

Good luck for next week, I hope they find your small bowel to be clear now that you're not flaring heavily - I imagine that would imply that it was in fact backwash ileitis they saw 2 years ago? Crossing my fingers for you .
__________________
Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
01-31-2012, 05:56 AM   #3
jaggartini
Member
 
Join Date: May 2011
Location: AUSTRALIA
Thanks for replying Ian. To be honest i know nothing about Humira and am not keen to go on anything else at all. I hadn't even given Humira a thought until my GI suggested that alternative last week. Until i get a colonoscopy I guess there is no use looking into that drug.
Methotrexate sounds toxic for me and I feel odd about taking a drug that can abort babies. I know that may sound odd but I've had 4 beautiful children and I'm concerned that I'd be on some drug; if it's strong enough to kill a featus then what on earth is it doing to my insides over the long term. That and I did have 2 reactions last year so I'm feeling like my body is telling me to stop popping pills and go another route. If the pills don't work and I have to give myself injections then that doesn't appeal to me either. I also like a wine or two and I'm told i can't drink at all on it. There goes my social life; well kind of, I'd quit drinking if i had to but you know what I mean. A glass of wine relaxes me and helps me forget about all this occasionally.
My GI doesn't like using the drug either so without his full recommendation i have my hesitations.

I'm really concerned about the long term side effects of taking all these drugs. I guess time will tell; I'll let you know in a week or so after the colonoscopy what they find. Hopefully nothing in the small bowel.

I do have to laugh about the terminology though...... "backwash" LOL, glad I can speak to my husband and anyone else on here with this type of lingo, anyone else would be looking at us all strangely.
01-31-2012, 12:38 PM   #4
maria
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Join Date: Jan 2012
Location: van, Washington
haha well they took my whole colon is on a slab and they still cant tell if it's uc or crohns. they also told me I would have surgery 3 months later for a jpouch. here I am 1 yr later still with my stoma and drs wont even look at me.. they wont do my reversal my surgeon left town. I even found him and did a surprise visit and asked how in the world are we gonna fix this all he said was I get.. I get it...not really because I still havent heard from him.lol
__________________
Ileostomy from UC but doctors are now thinking crohns. Since Feb 14, 2011


I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
Trying to stay gluten free.
01-31-2012, 01:01 PM   #5
jaggartini
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Join Date: May 2011
Location: AUSTRALIA
I read your other thread Maria and it does sound like you are in a bit of a nightmare; sorry to hear it, you must be so frustrated which is not nice with all you have been through already. I am lucky in saying that if there is no sign of Chrons with this colonoscopy then I am right to go for the J-Pouch. They will be looking to see if there are any ulcers in my small bowel, if there isn't then they will class me as an UC patient.

We have 2 surgeons who are very highly regarded where I live. I've met them both and they have seen in me in hospital on and off. I'm pretty positive they won't up and leave.

Are you able to find another surgeon to explain your situation?
01-31-2012, 01:23 PM   #6
maria
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Join Date: Jan 2012
Location: van, Washington
I read your other thread Maria and it does sound like you are in a bit of a nightmare; sorry to hear it, you must be so frustrated which is not nice with all you have been through already. I am lucky in saying that if there is no sign of Chrons with this colonoscopy then I am right to go for the J-Pouch. They will be looking to see if there are any ulcers in my small bowel, if there isn't then they will class me as an UC patient.

We have 2 surgeons who are very highly regarded where I live. I've met them both and they have seen in me in hospital on and off. I'm pretty positive they won't up and leave.

Are you able to find another surgeon to explain your situation?
Thank you. Yes I spoke with one in seattle and he said he doesn't feel comfertable doing it after 3 times going there about 2.5 hours drive there and 2.5 hours back. He's the only one I can get with my insurrance. I asked drs how much it costs and they laugh at me and wont even give me a figure. While I was there I said I would do anything to get my reversal and he said If I let him take 3 biopsys from my stoma ( they stuck a long tube through it into my stomach) and 2 biopsys through my rectumthrough enoscopy and it came back inconclusive with severe inflamation in my colon and through my stoma was normal. But he said he wont do it . I think I would be good to get the reversal also I have no syptoms really of crohns but who knows. I pretty much put my life on hold from waiting but I really doubt it will happen for me. But I think it will go good for you
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