pneumonia again!!!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 12/11/2008 11:11 AM (GMT -6)   
hi people- so for the 2nd time in as many years, I've got pneumonia. Thankfully, we seemed to catch it early this time, so I'm on zithromycin. Last time I wound up hospitalized, which was bad. My current case started about 10 days after an infusion, just like last time. I know my GI & primary care doc would agree that it's the meds I'm on which make me susceptible to this- I agree to, but.... am not quite ready for a jpouch. Although I'm getting there- not because of the UC, but because of the meds. Every time I run a fever I freak out & think I'm dying- truly! My temp was up to 103 yesterday- all I could do was layon the couch with icepacks on my head. My husband woke me up around 10:30 to check my temp, & it had come down to about 101, & has been dropping since. I saw my primary care doctor this morning. My doctor also told me to expect the high fever back this evening- apparently fevers like that run in cycles. I'm not too thrilled. So I'm taking Tylenol, the antibiotic, & hoping for the best. Hey, what I'm wondering is how long can one maintain "good" health while on high doses of Remicade & immune suppressants? It seems like most people try 'em for maybe 2 years then opt for surgery. What if you don't opt for surgery, what then? Know what I mean? Is it conceivable to think I could be on these meds for my lifetime???? Seems crazy.... I suppose I'd do better to ask someone who takes them for rheumatoid arthritis or something, some disease for which surgery is no cure. All the Crohnies/UCers seem to get fed up with the meds & go the surgical route. My husband wishes I would- just to get off the meds. I probably should. But.... rolleyes
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/11/2008 11:21 AM (GMT -6)   
Get that colon out!!

I haven't been sick with anything more than a head cold since I had surgery almost 8 years ago. My doctor attributes my good health to the fact that my diseased colon isn't compromising the rest of my health.

I know you aren't ready for it mentally but doesn't your body deserve a break?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 12/11/2008 11:48 AM (GMT -6)   

Eva Lou,

I am so sorry to hear that and I wish you a speedy recovery! That is one of my fears, too: Getting constantly and severly sick on immunosuppressants (and on Remicade, there is talk in my case, too) and then ... what comes after Remicade? Yes, then it is Humira I guess and if that all doesn't work or doesn't work anymore ...? I am in no place like you are right now, but I love to hate the thought of having the colon removed and I hate to love the thought about getting that colon out at the same time.

All the best wishes, please get well soon!

Scarlett


Scarlett, 38 yo., TX
Pancolitis since 3/1997
Worst flare of my life since 8/2008, finally showing improvement!! riding a rollercoaster of improvement and worsening
 
Meds
10 x Asacol a day
40 30 25 20 15 10 5 mg Prednisone
75mg 6-MP
Align
Flintstones Complete Vitamins
Cortenema
Rowasa


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 12/11/2008 11:51 AM (GMT -6)   
I know, I know! I totally know!!! It's the darn meds that'll do me in, not the UC. I can live with that. How can one really live a full life being immune compromised? It's stupid. I have been doing a lot of thinking about it- when my husband ever told me he fully expects me to have to get surgery at some point, I was blown away. Maybe this summer- when the kiddo is home from school, makes planning much easier. I don't even bother telling my GI, he'll be all over my case about surgery. AAArrrgh, I hate this! The decision, that is.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/11/2008 2:33 PM (GMT -6)   
Well if it makes you feel better, some GIs feel that when they lose a patient to surgery it equals failure on their part. What bothers me about that sentiment is that the GI doesn't live with the disease, doesn't take handfuls of prescription drugs, doesn't compromise their lifestyle, doesn't live in constant fear of the next flare, doesn't have to limit their diet, etc... It's totally selfish for a GI not to put quality of life as the #1 reason to have surgery.

My last year with UC I had a chronic cough (xrayed many times) and skin growths (that could not be diagnosed and if they were removed they came back). I had a brilliant internist (note-Not my GI) who told me that both the skin and the cough were manifestations of my sick colon and that if I had it removed both problems would go away. Four days after surgery, the skin growth went away and never came back. One week after surgery the chronic cough was gone, for good. My internist was right.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 12/11/2008 4:11 PM (GMT -6)   
I think my GI is just sick of me, truth be told. He's been recommending surgery for the past 2 years, mainly to get off the meds. Plus with the numerous respiratory complications due to the meds. He's willing to work with me & go the med route, if I choose, but his opinion is surgery. I have been thinking about it a lot. I get envious of people who have great success with a jpouch. I think my biggest fear is that once the pouch is reconnected, it'll be like the UC is back- lack of bowel control, lots of bm's per day, basically unmanageable. Plus the pouchitis aspect- the surgeon I spoke with told me that when people have that, they say "My UC is back!".
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/11/2008 4:30 PM (GMT -6)   
The majority of us who have had the surgery are happy with the results. Even those who for whatever reason had to go back to a permanent ostomy are happy to be healthy and rid of UC. I know it's hard to see life as being any better, we all went through that. But have you met anyone on this board who has regretted having surgery?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/11/2008 5:53 PM (GMT -6)   
Eva Lou, I am so sorry about the pneumonia!

Honestly, if I were you, I would go for surgery. And if I can't get off of Remicade in the next year or two, I'm planning to have surgery; I can't imagine taking these scary drugs for the rest of my life. Sometimes I wish I had not canceled my surgery. But I can understand why you're hesitant. It's a huge decision and you'd be kinda taking a leap into the unknown. And then you still have worry about pouchitis once you get the j-pouch. It's like, some times I want to have surgery just to get it over with (b/c I'm pretty sure I'll need it in the future), but other times I feel like dealing with the disease is better than taking a risk.

I hope you start feeling better soon and get closer to a decision about this DD!
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 10:09 PM (GMT -6)
There are a total of 2,974,352 posts in 326,171 threads.
View Active Threads


Who's Online
This forum has 161240 registered members. Please welcome our newest member, brachyi125.
316 Guest(s), 10 Registered Member(s) are currently online.  Details
logoslidat, California Dreamer, artemis111, The Dude Abides, subduedjoy, nepol, valli1234, RobLee, LJohn23, Tall Allen