Post-Impromptu Hospitalization Update

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jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/23/2008 11:37 AM (GMT -7)   
In case you remember, I went in to get some blood last Monday. Well...

-Ended up admitting me to the hospital
-Was running temperatures as high as 104.8. Still don't know why.
-Remicade officially not working anymore.
-GI was out of the country.
-New GI wanting to start me on a brand new (May '08) IV drug. (Starts with a "t" maybe?). I'm telling him no. I'm sick of this cocktail of drugs.
-Released last night from hospital. That is now three hospital "visits" in a year that have been about a week each.
-I'm going in for my follow-up with my new GI tomorrow before I head back out of town to school. I'm telling him I'm "sick of being sick", I want a j-pouch, and I want to move on with my life.

Wish me luck.

/rant
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/23/2008 11:40 AM (GMT -7)   
Good luck!

Start making your list of questions for the surgical consult. Being proactive tends to help my moods :)
Pan-colitis and GERD diagnosed May 2003</U>[/color>

[color=#008000>Osteopenia]

<FONT color=orange>Status: close to remission?!?!?


20mg Pred, Asacol 12 per day, Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio





Co-Moderator for the UC forum:
www.healingwell.com/donate</A>


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 11:51 AM (GMT -7)   
James,

Was it Tysabri maybe?
I don't blame you for making the decision you are. I haven't even tried Remicade yet and I'm seriously considering doing the same. I've made a list of questions already to ask a surgeon as well and I think it will really help. Here are some examples if you're interested:

How many j-pouch procedures have you performed? about how many were laparascopic?
Do you think I would be a candidate for laparascopic surgery?
Do you ever perform the J-pouch procedure in one step and do you think I would be a candidate for this, or is it safer and preferred to do it in two steps?
Could you show me what the scars would look like and where the stoma would likely be placed?
Is there anything that can be done to help minimize adhesions and scar tissue?
I understand that with the j-pouch, most people use the bathroom up to 10 times a day or more after surgery. This is how things are with UC and I’m wondering what difference there would be!? Will there still be pain and urgency?
What about the risk of incontinence?
How can hernias be reduced after surgery and have you found that they are a common problem?
When do you think I should be able to return to work?
What are the restrictions to follow afterwards, such as how much weight to lift and for how long?

Good luck and keep us posted, I'm really interested to hear what your GI says! I always wonder if they are very reluctant when someone "chooses" to have surgery; I'm afraid mine will give me a hard time and not give me a referral to a surgeon since I'm not deathly ill at the moment.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/23/2008 1:08 PM (GMT -7)   
James,

So sorry to hear that. I wonder myself if I am just buying time. Please let us know how your appt and consults go, I am very interested in hearing more.


EdieKristen - is the avg. really 10 times a day? I thought it was 4-6 and once at night???

Also, a question I have is how much control do you have when you have a j-pouch, how near to a toilet do you need to be? I would ask that.

Good luck w/everything.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/23/2008 1:39 PM (GMT -7)   
If my two cents if worth anything, I would opt for surgery.

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/23/2008 1:46 PM (GMT -7)   
Sorry you are having a tough time. There is a thread someone started w/ their j pouch blog. It has lots of information on surgery. Keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 1:59 PM (GMT -7)   
 
Beth75 said...
James,

So sorry to hear that. I wonder myself if I am just buying time. Please let us know how your appt and consults go, I am very interested in hearing more.


EdieKristen - is the avg. really 10 times a day? I thought it was 4-6 and once at night???

Also, a question I have is how much control do you have when you have a j-pouch, how near to a toilet do you need to be? I would ask that.

Good luck w/everything.

Well, they say that right after surgery it can be up to 10 times a day, but after awhile when your pouch adapts it usually goes down to around 4 times a day, which I can definitely deal with.
I am really interested in the control/urgency as well. You would hope it would be manageable with no urgency since that's what we're trying to get away from!

I've read also that after the 1st step when you have the pouch but are not yet using it, they have you do water enemas and you start at a certain amount and try to hold it for awhile and then expel it, and you gradually increase to a certain amount of cc's to help expand the pouch before the 2nd step. I wonder if you were really diligent with this and Kegel exercises if you would have more luck after surgery and less frequency?

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/23/2008 2:17 PM (GMT -7)   
Tsyabri is a good drug to stay away from, James. You're smart to be talking about surgery. There's a link in this thread to a member's blog about his surgery. You may want to take a look:
 
http://www.healingwell.com/community/default.aspx?f=38&m=1160915
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 3:00 PM (GMT -7)   
Strange, I just looked at the Tysabri website and this is what it says:

Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems. No one can predict who will get PML. Your chances may be higher if you are also being treated with medicines that weaken your immune system. If you use Tysabri alone, it is not known if your chance of getting PML will be lower, nor is it known if the length of time on treatment with Tysabri increases your chances. There is no known treatment, prevention, or cure for PML.

Tysabri is not recommended if you have a medical condition that can weaken your immune system, or if you are taking medications that weaken your immune system. Tysabri may increase your chance of getting an unusual or serious infection. Tysabri may cause liver damange.



OKay... so, if taking this drug with a weakened immune system could cause a fatal brain disease (which they never mention once whether or not it is rare... Every other drug says you may develop a RARE disorder, but this basically seems like it's pretty possible).. then why the heck are they giving it to people with IBD????? That confuses me, and this drug does not sound like anything I would want to risk taking.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/23/2008 3:10 PM (GMT -7)   
James, let us know how your appointment goes. I don't blame you for wanting surgery--if/when Remicade fails me, that's what I'll be doing, too.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/23/2008 4:10 PM (GMT -7)   
Leukoencephalopathy is rare. It's also very ugly and slowly fatal. I'm pretty brave about drugs, but that's why I said it's a good drug to stay away from. I wouldn't take it ever.

My GI's staff said they will be using it only for rare cases of really difficult Crohn's disease, but the docs don't feel it's appropriate for UC when surgery is a viable option. The risks are low but terrible.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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