really bad night.. have some questions

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/2/2010 7:01 AM (GMT -7)   
I have been on the prednisone for a little over a week at 40 mg daily.. I am also on Levaquin, probiotics, multi and my propranolol. My joint pain is gone completely, my sinus infection is feeling much better..but I am still running to the bathroom with quite a bit of urgency.. and when I say urgent the bathroom better be within inches of me.. it is embarassing to say the least. I am not going all day long.. about 4-5x urgent..

I had a stressful day yesterday.. I don't know what happened but on a trip to the store with my daughter I was running to the bathroom.. than doubled over in pain.. somehow I got back to the car..sat there for a while and than we started home.. made it to a mcdonalds where I sat in the bathroom in pain for 20 min..nothing passed.. got back in the car and made it home.. for the next hour i was on the floor in pain..no fever..no blood.. just gut wrenching pain..felt like everything was spasming.. it hurt so bad.I could not stop crying..my husband came home and remembered the dr saying the bentyl was for spasms so he gave me one...the pain did finally resolve and I was able to sleep..

this morning I am back to running with diarrhea. I feel like I have been hit by a truck.

question is this...I know everyone has told me to be patient but at what point do i know the steroid is not working..I do plan on calling the dr tomorrow again..I don't think this is right.. any of it...

does the urgency ever go away or is that part of life now?
are morning always bad.. every morning?
will my bowel movements ever look normal again?

I ask the drs this question and they look at me and say you have crohn's.. that doesn't help me..I need answers...

thanks for listening...i do appreciate it...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 5/2/2010 7:20 AM (GMT -7)   
June, we are all different but I think your doc will find the right meds to help you. That takes time and I know you dont want to hear that right now but like I said, we are all different and you doc will have to find what works for you. I also suggest you start a food diary an keep track of what you eat and how it effects you. Soon you will find what is ok and what to avoid. Also keep records on tests run , results and all meds tried and how they effect you. Trust me, you wont be able to remember and you dont want to try the same meds twice or take something that disagreed with you more than once. Hope you feel better soon...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


natie13
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 5/2/2010 7:22 AM (GMT -7)   
i was on pred earyer this year on 40mg daily and it helped me alot! my frist dose was at the hospital throu IV and the next morning i felt so much better. i heard the dr say that i shouldnt have to wate a week for the body to absorbe the med taking it oraly. so i guess in a week of taking pred. you should feel better not worse.
natie=]
19y/o Dx when i was 9 with Crohn's.
on 6mp since i was dx. been on Humira every 2 weeks for 2 years and counting, and now about to start on Rowasa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/2/2010 8:06 AM (GMT -7)   
Well my personal opinion is its the Flagyl giving you the urgency. Everytime I take antibiotics I am more crampier and have much much more diarrhea. I think its the antibiotic making you feel worse, not the Pred. The Pred is probably working, but the Flagyl side effects are blurring the results. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/2/2010 8:22 AM (GMT -7)   
Hi June, so sorry to hear you had such a rough night.

Sounds to me, right to the description of feeling like you've been run over by a truck (I used the line, "run over by a small Mac truck") that you had one nasty cramp attack.

Sniper idea is a good one, keep a diary of what you eat and see if that gives you some clues as to what to avoid.

I would suggest you avoid raw fruits and veg, fibrous meats and fast/processed food for a bit and then introduce one thing at a time, a few days apart, to see how that goes. Remember, nuts, seeds popcorn are not good anytime. Apples gave me a cramp attack every time, but I could eat apple sauce.

I had those for years, and it really does feel like your being run over, repeatedly.

One of the things that worked for me was plain white rice, no butter/soya ( a little salt in the cooking water is ok). I would take 2 -3 table spoons and it would take the duration of the attack down. I always got diarrhea afterward.

I also found a massage therapist, lucked out really (I was at a party and got an attack and the massage therapist offered to help) She did myofacial release, specifically "skin rolling" on my back and taught me how to teach others to do it, very easy to do (not on yourself of course, darnit) and teach, and this turned out to be a god send. It would stop these attacks relatively quickly, which was better than the 6 hours of pain I was living with every time I had one, which prior to surgery was way too often.


How long are you on the Leveaquin for? It's an antibiotic, so I assume not much longer. Antibiotics cause diarrhea in most every one, healthy guts or not, and should not be taken with probiotcs. These two can work against each other as antibiotics do not distinguish good bacteria from bad, they effect both. Once your off the antibiotics, your body will need the probiotics to return your intestinal flora to balance. This is true for anyone who takes antibiotics, not just Crohnser's

I would assume you stared the probiotics just recently too? Sometimes these can be hard on our guts at first, or you need a different compilation of probiotic bacteria, each maker uses different sources, some I can take, some I cannot. I have found with probiotic and all supplements, it's best to start off on the smallest dose, and even every other day building up slowly to the full dose. Again mixing anti and pro biotics can cause problems.

Probiotics force your body to go through an adjustment, as the bad bacteria get's killed off and the good bacteria takes over, so it can make you feel worse before you feel better. You may get more gas, bloating and diarrhea, (these should not cause cramp attacks though) all should calm down within a couple of weeks.

Having said this, you really need to let your doctor know you are having severe cramp attacks as these can be the result of the antibiotics your taking or indicative of strictures.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/2/2010 8:28 AM (GMT -7)   
You get any worse do not hesitate about going to the ER. I am concerned about you.
It can take weeks to months to feel better sometimes. But I do think your doctor needs be updated on your condition. Urgency is quite common on this board and as for my stools have never been the same. This may be a stupid question, but what did you eat yesterday? The reason why I ask is that I have some foods that trigger spasming for me.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/2/2010 8:41 AM (GMT -7)   
I respectfully disagree with MToronto2 on her statement about Probiotics. You should always take Probiotics while on Antibiotics. BUT...you should always take them at least two hours before/after your antibiotics. They help to even out the bacterial levels since the antibiotics kill not only the bad bacteria but the good. The probiotics help to replinish the good bacteria. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

ZiggyZagnut
Regular Member


Date Joined Apr 2010
Total Posts : 68
   Posted 5/2/2010 8:43 AM (GMT -7)   
I was on Flagyl a while back, it made me feel horrible. I think it is really important to find as GI that will work with you. You may have to shop around, or go outside your network, which may be expensive. They are your best ally, I have found. Hope you feel better!
30yo/male/western NY
diagnosed with crohns in:2001- Asacol and diet beat it into remission in 2004
Nov. 09- Crohns is back!
Medical Issues- ADHD, anxiety, depression, kidney stones,
Meds- Vyvanse, Lexapro, Xanax, Darvocet


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/2/2010 8:47 AM (GMT -7)   
Ah, so Levequin and flagyl are the same? I could never keep that stuff in me long enough to cause my guts to knot up. Can you say where'd that vomit come from so fast? Spooky stuff.
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/2/2010 8:53 AM (GMT -7)   
thanks for all of this..let me see if I can answer some questions.. I do very much appreciate the help..

so I am not on flagyl any longer.. I am on the levaquin..the doctor told me that it was safest for my gut but I had to take probiotics 2 hours after taking the levaquin.

eating...pretty much the same thing...except last night my daughter wanted a tuna noodle casserole , gluten free noodles... tuna..oh and some cheese...and had a moment yesterday ( the anniversary of my other daughter's death is approaching, never a good time of year for me. ) so I was just having a hard day..other than that.. I didn't eat anything weird.. usually i can tolerate cheese in small amounts?

I also wonder if I can't see the prednisone working because of the levaquin..

the urgency should be healing then? and morning is common for attacks?
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/2/2010 9:01 AM (GMT -7)   
Junerainbow, Levaquin is an antibiotic in the same family as Cipro and Flagyl. And antibiotics can tear up us Crohnies guts big time. I took Cipro one time for 10 days and had no problems with it at all. Took it again about 1 year later and that time I only made it 4 days as it made me so sick and have the worst diarrhea. I really think its the Levaquin and the stress of the annivesary of your childs passing making you so sick. I hope you are almost done with the Levaquin. I think once you are off that you will start feeling better. Maybe talk to the doc about getting off of it, since its making you soooo sick. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/2/2010 9:13 AM (GMT -7)   
thanks for clearing that up... I admit i was confused...I have 5 more days of the levaquin..I am calling him tomorrow... trying to take it easy today.. just mild cramping so far and of course the urgency gong..but thank God not doubled over.. that was horrible.

hugs to you too
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/2/2010 9:18 AM (GMT -7)   
Take the Bentyl again that will help even with the mild cramping and sometimes it helps me to slow things down. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/2/2010 9:20 AM (GMT -7)   
thank you =)
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/5/2010 7:20 AM (GMT -7)   
so I called the dr and he was dismissive... he said i need to finish the levaquin.. ( 2more days) and start tapering off the prednisone. he kept saying i have mild crohn's...he doesn't understand why i am still sick...or in pain...I am trying to be patient.. i don't want to go to another doctor.. that and I am running out of options..unless I go to mayo.. I am trying to give him a chance because i know the sinus infection and levaquin have screwed things up... i don't know.. i feel like i am at the end of my rope...i don't know what is next.. i read the boards and the warnings of maintenance drugs.. I know this dr doesn't agree with that..

frustrated.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/5/2010 7:57 AM (GMT -7)   
I think right now as long as you are on the Levaquin you are gonna feel crappy. Only 2 more days to go:( The Levaquin really is NOT considered a maintainence med. Its used to help get a flare back under control. The med I use for maintainence is Asacol and it has kept me in remission for the past 5 years. Its one of the milder meds out there. Hugs!


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/5/2010 8:14 AM (GMT -7)   
Ok nanners.. patience is key than? the levaquin is for the sinus infection... which i hope is gone..the prednisone was for the flare and than in three weeks I start using pentasa..

ok.. i can do this.. wish I were a more patient person =)
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009
Diagnosed with Crohn's March 2010- currently Prednisone, Propranolol and Vivelle Patch
Have taken Entocort, Bentyl, Flagyl, Lomidil, Colestipol
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/5/2010 9:07 AM (GMT -7)   
I concur with the others.....antibiotics can do bad, bad things in regards to urgency. Whenever I've been on Flagyl especially, mornings are absolute hell for me. I'm talking 5-6 very urgent trips within the first 2 hours of being up, and then it usually lets up a bit.

Hang in there. Prednisone should start helping more soon, but it's probably being negated by the antibiotics. You can do it. :)
30/f
chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed


tigerpawn
Regular Member


Date Joined Apr 2006
Total Posts : 346
   Posted 5/5/2010 10:39 AM (GMT -7)   
I want to say great post by nanners and leysa, i am currently on flagyl, and ciprofloxacin,
also asacol and pred, tomorrow is my last day on flagyl and cipro, it was a 7 day jouney
first time, it seems like those drugs made my stools dark and loose, also some cramping attributed to it, i start weening off prd tomorrow doc wants me to go from 40 to 20 mg.
tiger
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