Need some help for my husband

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/12/2008 5:30 AM (GMT -7)   
I wrote a few days ago, and mentioned that it looks like my husband is flaring again. Well, he still is. It started last Friday, and we immediately upped his dose of Canasa, and from Saturday onwards, switched to using Cortifoam. We consulted with his doc, and he put him on both Canasa and Cortifoam and said to come see him in 2 weeks, or call again if he got worse.

Well my husband even after 5 days on Cortifoam, does not seem to be getting better. He's still having poopie slurries rather than formed poop, anywhere from 2-4 times a day. One of the most debilitating symptoms for him is abdominal cramping. He doesn't spend a whole lot of time pooping every day, but the cramps are wearing him out, and making life miserable. He's planning to call his doc and ask for something to address the cramps, and also find out when he should be seeing improvement based on his current med regimen.

Here are my questions to you guys:
1.) How long does it take for cortifoam to work? Some websites I read said 5-7 days, we're at the 5 day mark, is it time to call the doc and look for other medication?

2.) How do you address abdominal cramping? What meds do your docs prescribe, and which has the fewest side effects and drug interactions?

3.) Do you have any other suggestions to help my husband get better soon?

Hopefully some of you have some answers for me.

Thanks,
PV
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently mildly flaring - now taking 4 VSL3, Canasa & Cortifoam
Nightly 1000mg time release Canasa
VSL3 1 packet daily


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/12/2008 9:11 AM (GMT -7)   
hello

1.) How long does it take for cortifoam to work? Some websites I read said 5-7 days, we're at the 5 day mark, is it time to call the doc and look for other medication? - the hydrocortisone e's took about two weeks for me to see real improvement.

2.) How do you address abdominal cramping? What meds do your docs prescribe, and which has the fewest side effects and drug interactions? - heating pad helped me and tylenol PM

3.) Do you have any other suggestions to help my husband get better soon? - eliminate any foods/beverages that stimulate bm's (for me that is coffee) I would try elimating caffeine and coffee and soda's......just a suggesstion.
Beth, 32
Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/12/2008 9:12 AM (GMT -7)   
I know that when I was on the steroid enemas, sometimes I wouldn't seen an improvement for 2 weeks and that is if I was flaring badly. So maybe he just needs more time for the foam to work. I have no comment about the cramping because I've never taken any anti-spasmodics but he can also try a heating pad to help ease the pain. Is he still on the VSL at one pack a day? If so, he can try increasing to 2 a day and see if that helps. Can he tolerate fiber? Maybe he can try a fiber supplement? This will help him bulk up his stool so he's not going as much.
 @--->--SHERRY--<---@
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~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~Sacroiliitis-epidural injections
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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/12/2008 11:22 AM (GMT -7)   
Hi there. Thanks for your responses.

My husband gave up caffeine (including coffee) and all carbonated beverages, plus most sugary things, after his initial diagnosis with Ulcerative Proctitis. He's one of the most disciplined people I know, and he's always been very strict about his diet.

He's upped his VSL intake to 4 per day - 2 in the am, 2 in the pm, but we have no idea if this is helping or not. He doesn't really have much gas. He has 3 problems - his stools are slurries with blood and stinky, he's got horrible abdominal cramps, and he's got some mildly achy joints. The most debilitating of the 3 symptoms is the abdominal cramping. I think he'd almost be functional if we could get that under control.

Thanks for your suggestions - he's now using the heating pad and taking tylenol arthritis. Right now, he's barely able to eat anything without cramping up - the cramps don't make him want to go to the bathroom, they just hurt a lot (or at least this is what he says). He's living on home made chicken soup, and some broiled meats and electrolytes made with honey.

I called the doctor and got the earliest appointment he has for tomorrow (Thursday) afternoon. Hopefully he'll be able to give him some meds that will make him feel better. He is only going 2-4 times a day - the frequency of bms is not what's really troublesome - it's the darned cramping. Everytime he eats even one spoon on something, he starts cramping. He wakes up at night because he's cramping. Hopefully the doc will give him a magic bullet tomorrow - I just hate seeing him in pain.

So, based on what you'vetold me, we need to wait at least 2 weeks before giving up on the cortifoam. Does it really take that long for even marginal improvement?
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently mildly flaring - now taking 4 VSL3, Canasa & Cortifoam
Nightly 1000mg time release Canasa
VSL3 1 packet daily


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/12/2008 11:33 AM (GMT -7)   
Hi PV...was he on the nightly canasa and then flared?

I would suggest that the doctor also put your husband on Asacol...6 to start at least.. can be taken twice daily in a half split dosage.

I would also suggest asking the doctor for dicyclomine (Bentyl)...which is an antispasmodic. They come in 10mg and 20mg dosage. I took the 10mg for 15 years before upping it.
If he gets 10mg...better yet, because he can double up if needed for example at bedtime.

I would have suggested the Rowasa as the retention enema, hopefully the cortifoam will give him relief soon.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/12/2008 1:34 PM (GMT -7)   
for my improvement, I was going 25+ times a day and at the end of the two weeks, probably 10 to 15 times a day and then after that week by week I just had less bm's, some days I would take a few steps back and some a a few more forward, it took me from mid sept to end of dec to get the flare under control. thought that is just my latest experience.
Beth, 32
Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/12/2008 4:05 PM (GMT -7)   
My husband is allergic to Asprin, and Ascaol says anyone with Asprin allergies shouldn't take it. He sneezes non stop when he takes asprin. That's one of the reasons he decided not to use Asacol previously, since thankfully his inflammation was just in the rectum and could be covered by rectal meds, with minimal systemic absorption. He has had no problems with the Canasa, so the systemic absorption must be below what he reacts to.

However, I am wondering if because Asacol is coated so that only the higher PH in the colon can dissolve the coating to release the payload, he should be safe taking it as well. I know there is more systemic absorption with Asacol than with topical rectal meds. Oh well, I guess the only way we're going to find out is to try it.

Quincy, I will definitely be asking the doc about anti-spasm medications, and I'll mention bentyl and see what he says. Over the afternoon, the tylenol seems to have helped keep the intensity of the cramps lower, and the heating pad also seems to be helping. So thanks for those suggestions. And to answer your question, yes, he was taking canasa nightly when he started flaring.

I'll update this thread when we get back from the doctor's tomorrow. Thanks so much for the support.

PV
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently mildly flaring - now taking 4 VSL3, Canasa & Cortifoam
Nightly 1000mg time release Canasa
VSL3 1 packet daily


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/14/2008 9:02 AM (GMT -7)   
Well, we saw the doctor yesterday - I felt like it was most unproductive. He listened to all the symptoms, and he said we have to go through a process of elimination - so he ordered some stool tests to rule out any infectious causes first, and also to give my husband some relief from cramping, put him on a liquid diet (jello, tea, broth, electrolytes, etc) at least until Sunday.

So, this is what he said we're going to do:
1.) Rule out infectious causes (we came back about 2 months ago from a trip to India) - but I think this is highly unlikely
2.) If no infectious causes are found, do a prepped flex sigmoidoscope to see how far up the inflammation goes
3.) Treat it with medicine appropriate for the level of inflammation

For now, my husband is on a liquid diet, and the doc told him to stop taking cortifoam for now. I submitted the 3 stool samples they asked for this morning, and I should hear back from them next week. Husband seems to be doing ok with tylenol and the hot pad. He's not getting better or worse - he has 2-3 poops that are slurry and has some cramping. I hope they figure out what course of action to take, and get him back to normal soon.

I have too much empathy I think, and get myself all wrung out seeing him sick. Oh well, I guess I have no choice but to wait a few more days to figure out what the heck is going on.

I'll update this thread when I have more info. Thanks for your help.
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently mildly flaring - now taking 4 VSL3, Canasa & Cortifoam
Nightly 1000mg time release Canasa
VSL3 1 packet daily


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/14/2008 9:21 AM (GMT -7)   
Hi PV...unfortunately, the process of elimination is most difficult to deal with. I hope you get answers sooner than later.

Looking forward to the update.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/17/2008 6:40 AM (GMT -7)   
My husband's stool test results came back. He has a C-diff infection! I thought you needed to have taken antibiotics to cause an overgrowth of c-diff. This is crazy. Anyway, because the last time the doc prescribed Flagyl (when he thought he had giardia), my husband got horrible cramps and was howling in pain - so this time the doc has put him on vancomycin. I'm off to the drugstore to go and pick it up.

I am totally shocked as to how he can have a c-diff infection. We haven't been to a hospital, where it's common, I haven't been sick . . . I know it can be transmitted the fecal-oral route, but I thought it would be rare, given that this is a rare infection.

Anyway, I'll have my husband take plenty of VSL#3 (about 2 hours after each round of antibiotics). Any other advice you have for me? Others who've had this, please chime in and let me know any tips you have. C-diff is scary, antibiotics are also scary, especially for folks with UC - any help or advice will be greatly appreciated.

Also, I have one more question - He had very similar problems his last flare - in fact, it was exactly like this (this time he has more abdominal pain) - the doc thought he had giardia (from drinking well water), put him on flagyl, and flagyl caused him lots of problems (like going 20 times a day instead of 3). We actually discontinued flagyl mid-way, and because the stool samples came back negative for everything, the doc seeing the number of times my husband was going to the pot, prescribed him prednisone at 40mgs and we tapered from there. Could it be that even that time, the problem was C-diff, and the flagyl kinda took care of it (vastly reduced c-diff's numbers), and the prednisone then took care of the inflammation?


Thanks for any help and advice,
PV
Husband with Ulcerative Proctitis
Diagnosed March 2003, 1st Flareup after diagnosis Apr 2006
Currently mildly flaring - now taking 4 VSL3, Canasa & Cortifoam
Nightly 1000mg time release Canasa
VSL3 1 packet daily


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2201
   Posted 3/17/2008 7:16 AM (GMT -7)   
Any time the gut ecology is imbalanced and the system is weakened, an opportunistic infection like c-diff can get a foothold. It's possible he had c-diff all along, but you'll probably never know for sure.

You might want to consider trying a different probiotic. Not all brands work as well for everyone. I'd highly recommend you look at Natren's probiotics. You want the most effective one you can find, under the circumstances, and Natren is pretty much the gold standard. He'll need high doses to combat the effects of the vancomycin, which will kill off everything - the good and the bad flora. Supplementing with l-glutamine may help with the runny bowel movements, although you may not be able to expect much improvement while he's on such a powerful antibiotic.

There's a discussion amongst c-diff. sufferers going on here:

http://www.jinipatelthompson.com/bb2/viewtopic.php?t=583&highlight=cdiff


Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30076
   Posted 3/17/2008 11:29 AM (GMT -7)   
It's difficult to say without a stool sample whether he had it all along. All it takes to become an infection/invasion is an imbalance in intestinal flora in a compromised person.

I hope the vancomycin helps him quickly.

If your husband did have it previously and took the flagyl but stopped it, it's possible that's when it was able to become more prolific.

Whatever the reason, I do hope it helps him quickly. He'll have to have other stool samples to make sure it's gone...push that with the doc.

Keep us updated...it's good news that he knows what's going on.

I think you should be taking probiotics as well since you live intimately.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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