Advice before I see my GP?

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Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/28/2007 2:56 AM (GMT -7)   
Hi folks,
well, that was the worst christmas ever! I woke up at 4am on xmas day, vomiting, absolutely soaking with sweat, terrible hedache, dizzy, etc, etc. That was me until the end of the following day: couldn't eat anything, couldn't get out of bed, sick all the time, I never even seen the kids open their presents (that really got me down!).
I can honestly say it's the worst I've felt for years & years.
I feel a lot better than I did, but still pretty awful.
However, it's gone into my chest & I'm coughing up loads of phlegm with some blood in it. So, I'm of to my GP (which is my normal doctor, not GI) and I'm just wondering, with all my meds & colitis, is there anything I should bear in mind?
I seem to remember reading something about it being bad to take antibiotics with UC? ALso, I'm sure I read it's more difficult to shift an infection whilst on steroids? I'm on 20mg just now. So wondering what the options will be?
 
Last of all (sorry guys!) I seen my consultant week/half ago, and he was concerned that I still get bloody water sometimes and still have no bowel control. Basicall, I will suddenly get a big cramp in my tummy and I literally have to run to the toilet and explode! Quite a few times I don't make it confused . I'm going roughly 3-4 times a day, + or - a few.
It always starts as D and then usually a few solids.
 
The consultant thought it may be a reaction to the Pentasa, so he halved the dosed from 4g/day to 2g/day. The day after I halved it, I went to the toilet 12 times! All D.
 
Now I'm going as above (3-4 times a day, + or - a few.
It always starts as D and then usually a few solids.)
Still D and still no control.
 
So my (last thank goodness I hear you say!) question is, I go back and see my consultant in 3 weeks, what are his options? If it is a reaction to the Pentasa, what next?
 
Thanks!
 

Diagnosed Indeterminate Colitis 25/11/2007
4g Penatas / day
40mg Prednisolone,
Solofalk Enemas
Omeprazole 20mg/day (stopped taking them myself, seem fine)
25mg Prednisolone
2g Pentasa/day
20mg Prednisolone
Omeprazole 20mg/day (started getting terrible heartburn so back on them...DOH!)
Calcium tablets
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/28/2007 6:46 AM (GMT -7)   
I'm so sorry you were feeling so poorly! What a horrible way to spend the holiday :( Firstly, if you are sick and need antibiotics that comes first no matter what. Yes there are usually certain types of antibiotics to avoid with UC such as the 'cyclines. Are you on any probiotics? If not, then you should start one but stagger the times that you take an antibiotic and a probiotic - I think it's like 2 hours (not sure). Even yougurt should help a little to keep the gut flora in the good.

As for the Uc, did you stop the enemas? If so why?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/28/2007 6:51 AM (GMT -7)   
Hi thanks for the reply, when I discharged from the hospital the duty doc just told me to take them for a week. I did remember thinking it was strange, especially after reading the forums and folk seem to take them for ages, especially since I'm still in a flare.
I'll ask my consultant next time I see him.
Diagnosed Indeterminate Colitis 25/11/2007
4g Penatas / day
40mg Prednisolone,
Solofalk Enemas
Omeprazole 20mg/day (stopped taking them myself, seem fine)
25mg Prednisolone
2g Pentasa/day
20mg Prednisolone
Omeprazole 20mg/day (started getting terrible heartburn so back on them...DOH!)
Calcium tablets
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/28/2007 7:31 AM (GMT -7)   
Definately ask to be put back on the enemas. This might allow you to wean off the pred easier. But I'm wondering, were you confirmed to have a sensitivity to the Pentasa? Are you still on the half dosage? Because if you do have a sensitivity to the Pentasa, then the Salofalk might not be the best thing to try. Maybe you can try either a steroid enema or a steroid foam. Of course, you should ask your GI about this when you see him/her.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Scottishcammy
Regular Member


Date Joined Nov 2007
Total Posts : 124
   Posted 12/28/2007 7:33 AM (GMT -7)   
Hi, nothing confirmed on the Pentasa. I'll ask my GI on the enemas. Do you know what they will put me on if I can't take Pentasa/mesalasine? Bit concerned about that as I believe the mesalasine helps avoid cancer and the other drugs have bad side effects.
Diagnosed Indeterminate Colitis 25/11/2007
4g Penatas / day
40mg Prednisolone,
Solofalk Enemas
Omeprazole 20mg/day (stopped taking them myself, seem fine)
25mg Prednisolone
2g Pentasa/day
20mg Prednisolone
Omeprazole 20mg/day (started getting terrible heartburn so back on them...DOH!)
Calcium tablets
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/28/2007 8:48 AM (GMT -7)   
There are two other "first line" Uc meds - Sulfasalazine and Basalazide (Colazal). Sometimes if one can't tolerate one they may have no trouble with the other. For instance, I can't tolerate mesalamines - causes intense abdominal pain, increased D and flu like symptoms but I have no trouble with Colazal. With Uc comes experimentation - sometimes you have to find the right combo that works for you.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/28/2007 8:49 AM (GMT -7)   
Just because you can't tolerate Pentasa doesn't mean you won't be able to tolerate other 5-ASA's, Cammy. There are any number of us who can't tolerate Asacol but do well on Colazal. To be truthful, my doctor changed me from Pentasa back to Colazal when I started with him, because he said he hasn't seen good results with Pentasa for UC. So ask your GI about other 5-ASA options before you give up. I think some state health systems use Colazal last because of the cost involved, which makes perfectly good sense. But I also think in your healthcare system, as in ours, the patient who advocates well for himself comes out ahead.

As for antibiotics, as everyone said, if you need them, take them. It wouldn't do to die from pneumonia while you're preventing a flare, now, would it? You should be able to find a good probiotic over the counter, and take it at least two hours after the antibiotic. This will help keep the good bacteria in your colon from being eradicated.

Hope you're soon feeling better!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 

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