Just out of hospital again after 10 days

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BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/23/2009 7:51 PM (GMT -7)   
Hi everyone cool Just thought I'd post an update on whats happened with me since I last posted.

Well I've just spent another 10 days in hospital, got out today thankfully, was going mad in there.

I only went in for my remicade infusion, but had been so ill the night before, in so much pain, and couldn't go to the toilet, that I was convinced I had a blockage and my bowel was going to perforate.

So I went for my infusion as normal, told them the trouble I was having and they admitted me. Been on Metronidazole and cipro and back on the steroids. Seems to have calmed down abit from when I went in, but not much, still losing loads of mucus and generally its coming out on its own again and I can't control it, which is quite annoying as its sort of not been too bad all week, then today, its back to having it's own mind again.

I was asked about having the operation to remove my large bowel, but again, I refused that.

So now the plan is to keep me on the Remicade, but getting it next week now, and if it doesn't work, I will be having it every 6 weeks instead of 8, and if that doesn't work, he's going to double the dose and hope that sorts it out. If not, it's back to the drawing board :(

I've been eating normally in hospital and have to say I feel alot more energetic now than I did when I last came out of hospital on the elemental diet. I never did get to see the dietician though, but I'm just going to eat as normally as I can for now to get my weight back up abit.

Hope everyone else is as well as can be expected with this annoying disease.

I'm on a steroid trip at the moment, so just want to clean and eat, which is good because my house needed it when I got back.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/24/2009 6:48 AM (GMT -7)   
Hi Glad to see your back home again and try not to overdo it. I am glad you have some energy that sounds good..Hope the Rem. helps .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/24/2009 7:48 AM (GMT -7)   
Yuck that doesnt sound fun at all. I agree with gachrons try not to overdo things, you could end up setting yourself back a few steps. Will keep you in my prayers that the Remi works for you.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/24/2009 12:36 PM (GMT -7)   
Thankyou both for your replies. I've actually done my wrist in vaccuming, so I think I did overdo it. Apparently a side effect of the cipro can be tendon damage, esp if taking Pred as well, so think that might be what's done it. Thats all I need in my right arm.

Hope you're both doing well?
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 1:16 PM (GMT -7)   
Got my phonecall to go for my remicade on Monday, Yayy can't wait, although it's not done me much good so far, I'm still hopeful that it's going to miraculously kick in all of a sudden.

I have a weird thing going on at the moment where my poop doesn't smell. I have no idea why this is, but I suppose its not a bad thing, but its also not normal. It actually doesn't smell of anything at all. Has anyone else had this?

All I've been eating is ready brek (addicted to it at the moment) and I've just bought a slow cooker, so been making some sort of meat and potatoes and carrots. Trying to eat a normal diet and not restrict anything, but thinking I should maybe cut out milk and bread and see what happens, although I don't eat that much bread anyway so that shouldn't be too much of a problem.

Had alot of blood today. On 30mg of pred for two weeks then weaning down one a week I think.

Arm still hurts as well :(
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/28/2009 2:04 PM (GMT -7)   
Hope the Remi does the trick for you and you get feeling better soon. Remember it could take a few infusions before it starts working. Good luck!!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 1/28/2009 2:25 PM (GMT -7)   
I hope the Remi works! Good luck!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 3:46 PM (GMT -7)   
Thanks for your replies, I hope it works too.

Hope you're both doing well?
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/28/2009 4:21 PM (GMT -7)   
Hi Busy not doing too bad just got over a deep freeze here so ready for a rest from the cold. How many Remmie treatments have you had so far? Cain't say much about the no smell poo are you going solid now? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 1/28/2009 7:36 PM (GMT -7)   
Hi Gail, glad you're not doing too bad, weather here is not so bad at the moment, bit wet, but not freezing.

I've had 3 infusions, should have had my 4th 2 weeks ago, but had an infection so getting it monday now.

Today is the first day since I left hospital that my poo is getting slightly more formed. It still doesn't smell though. I've been having trouble where it's just coming out on it's own when I stand up. Never really happens sitting down. Was only happening like that when I was losing mucus, but now it's like brown, sorry for too much info, but I am thinking as it's brown it's not mucus anymore, but still doesn't smell. I can't work it out. The trouble is by the time I get to the toilet there is nothing left to come out. I am going through so many pads and toilet paper and clothes changes it's getting ridiculous. I am hoping once it solidifies abit it will be easier to hold in, but for now it seems impossible. It's quite annoying if I have to go out because I have to keep going to the toilet every half hour to change my tissue and pads. It's so uncomfortable walking round thinking any minute now something is going to come out. That's why I'm not too bothered that there is no smell haha. I'd be more paranoid about it otherwise. I am taking 8 imodium a day as instructed by my doctor on monday. Also taking Tramadol which should constipate me abit. I don't really want to get too bunged up though otherwise I'll be in pain again and back in hospital. It's a vicious circle. I have some Fybogel just incase I need to use it. Should have asked for some movicol as well when I left hospital because that got me going in hospital. Unfortunately I haven't stopped though since.

My GI wanted to do another colonoscopy in a couple of weeks but I asked if I could wait a while longer for that as I feel they set me back and tbh I can't see it being much different from the last time he looked. It's not going to be any better I don't think. Could be slightly worse, but I don't think it's worth rocking the boat just yet, so I think he's gonna do one in a couple of months. He said he could do it with an enema and not the prep, but I can't tollerate the enemas, once they are in I have to get them out straight away, so they don't really work very well, is anyone else able to hold them in? I just can't, it's so painful I was actually pinned to my bed in pain the last time they gave me one in hospital, I couldn't even move to get onto the comode they had left next to me. Luckily I had asked for a pad for the bed and some massive nappy pad lol. Eventually I managed to shuffle onto the comode but it was so much pain. Don't know if it's because my crohns is near the end of my bowel?
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.

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