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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/12/2010 10:03 AM (GMT -7)   
So here I am...trying to be patient. Antibiotics have been done for 4 days now. Prednisone is tapered down to 20 mg and I am having diarrhea again sometimes as much as 8x a day...joint pain is slowly getting worse, I am tired... and yes still very moody. Pentasa is due to be started this weekend.

Hubby called dr because he is concerned.. dr is extremely upset that I am not better since I " just have mild crohn's" .. now he is wondering if something else is going on.

What does that mean? Something besides Crohn's? in addition to Crohn's? I am at my wits end..the dr is calling me soon to discuss all of this but I am sitting here just going crazy..

just venting... just tired of all of this...
rolleyes
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.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/12/2010 10:24 AM (GMT -7)   
I don't understand why you're waiting to start Pentasa. Seems like you should be able to take that with pred. And what was the reason for the antibiotics?

I'm sorry the pred is making you moody. Maybe instead of Pentasa, or in addition to it, you should put entocort into your plan. I took it along with my pentasa and it did help with my joint pain.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/12/2010 10:28 AM (GMT -7)   
The dr told me not to start the pentasa until I have tapered down to 15 mg. The antibiotic was for a sinus infection. I had tried entocort before but did not have a good reaction to it.. it actually made the diarrhea worse... almost as much as 15x a day so they took me off of that...
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.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/12/2010 10:31 AM (GMT -7)   
June, I went back and read your post about Mayo etc. I totally agree with the others there - maintenance meds are absolutely necessary!

That being said, I hope you are able to try a low residue diet for a few days.

I remember one flare that I had right around Yom Kippur. I was scheduled for a colonoscopy a few days after the holiday, so I ended up having to fast 2x in one week. When I got to the hospital for my scope, my DR listened to my complaints and then asked me if I had found anything that made me feel better. The answer was so clear - NOT EATING. Giving my bowels a rest was absolutely the best relief I had found before (or since, really).

Well, we do need to eat. I've noticed some people are on TPN, which is a really serious bowel rest. But a low residue diet might get you most of the way there.

And you absolutely must insist that you start your pentasa now, not when you're off the pred.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/12/2010 10:34 AM (GMT -7)   
I am on a low residue diet...I had avoided eating but the dr was against that and insisted that I start backing off the ensure and start eating regular meals...so now I do eat small meals..but I am eating.

I can't believe this is still a flare.. it has been going since christmas... flares don't last that long do they?

thanks
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.


sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/12/2010 10:51 AM (GMT -7)   
junerainbow- I am so sorry you are feeling so bad. I just saw that you tried entocort and it made your diarrhea worse and I was so suprised. The reason I say that is because I now remember being on entocort and my diarrhea got so bad to the point that I was not making it to the bathroom and one time when I was out I actually went to the bathroom on myself. I had no control and it was horrible. I asked the doctor if the entocort was making me use the bathroom more and told him what happened while I was out and he said entocort doesn't have that side effect and I felt so embarressed. I was kept on it for a year and when I finally tapered off after a while I was able to have control again. I have been very under treated and have only been on asacol. I had a 5 day stay in the hospital to get IV fluids and antibiotics and a seton drain put in for a fistula and was discharged last wednesday. I saw a new GI doctor from the hospital clinic yesterday and next week I am suppose to start steroids and 6mp (I had to wait till next week because they want me to take more antibiotics because since a colonscopy done last month I have been running a low grade temp on and off). I am now getting nervous about starting the steroids because I suffer from severe anxiety and panic attacks (which I take xanax for daily) I am so scared the panic attacks will get worse with the steroid. When I read about people who have to take pred. it is really starting to scare me so bad because it seems like everyone on it has a lot of anxiety and mood problems and basically just feel horrible :-(. Sorry, I didn't mean to start voicing my fears I was just really shocked when I saw that entocort made your diarrhea worse and the doctor made me feel stupid when I told him I thought it was making mine way worse. I hope you start feeling better and get some answers from your doctor.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/12/2010 11:12 AM (GMT -7)   
junerainbow, Hi sorry I was writing to you and just saw your last post. I have been in a flare in the same area since I was told I had crohn's about 3 years ago. I have never had pain but live in the bathroom and it makes me so tired. The only way I can leave the house is if I don't eat anything at all and just drink gaterade while I'm out but then when I do get home and eat I live in the bathroom all night. From my experience, yes it is possible to have a flare for so long. In the beginning I was told I had mild crohns and now because I have a rectal fistula (I think from a rectal abscess I had) they are saying I have moderate/severe crohns :-/. I am really learning now (especially from finding this forum) that maintenece drugs are very important because the new GI doctor told me yesterday that I have been very under treated and I am so upset because I feel if I would have been taken care of early I wouldn't have the rectal problems now and I could have enjoyed my life with my kids and husband.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 5/12/2010 11:20 AM (GMT -7)   
It's hard to imagine calling something a "flare" when what it really seems like is an endurance event. I think everything's relative.

I became symptomatic with the birth of my first child 10 years ago and I've never been in remission. But the diarrhea for me only lasted a couple of years (!!) and stopped completely when I started using Pentasa. I've never had more than 4 bms in a day - it sounds like your diarrhea is much more frequent. What I call a "flare" is when I have significant discomfort, fatigue, joint pain, passing blood or mucous - all at once. Usually my symptoms are much more manageable (bowel irregularity, some joint pain).

I saw that you're using probiotics. You might want to consider eliminating that. In some patients they make bowel symptoms worse, not better. I'd suggest you get your diet as simple as possible. And does Ensure have lactose? Make sure that you are lactose-free, or using lactase supplements if you're eating dairy.

Oh, and Nakira - I become euphoric on pred. Maybe you will too?!

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/12/2010 11:23 AM (GMT -7)   
I don't know if your doctor would go for this or not, but I have been on Xifaxan for about 4 years or so and it has greatly reduced the number of trips I make to the bathroom. It is an antibiotic used for travelers D, but it is only absorbed in the intestines, so it is really a mild antibiotic. It is used off label for CD, and sometimes short term for SBO. It might be helpful with that one symptom, and then you could at least catch your breath so to speak. You can do a search on this site. We have had a number of threads about it recently.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/12/2010 11:25 AM (GMT -7)   
sweetnakira~ the first drs I had made me feel stupid for the entocort as well.. told me it wasn't possible...I am so sorry you had the same reaction..the pred is horrible...i hope you start feeling better as well...I ca n so relate to the not eating in order to leave the house...

the dr just called... he is testing me for cdiff again. Than he is sending me to the mayo... he has no idea why I am not responding. He can hear in my voice that the prednisone is making me crazy.. he just doesn't understand why a case that is mild is not responding... I am frustrated everytime he says that... is it possible I don't have crohn's? is it possible that mild crohn's does not respond to prednisone? I am so confused right now..
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.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/12/2010 12:46 PM (GMT -7)   
june....someone used the term "undertreated" and I believe that is what's happening with you. I hope you get a second opinion soon at a reputable teaching hospital.

I also don't understand the fear and panic everyone has about prednisone. Yes, it has possible side affects - but millions of us have taken this drug without experiencing any of them. If you do experience side affects you can get off of it but to get into such a panic state before any of that happens does no one any good.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/12/2010 1:06 PM (GMT -7)   
kazbern, I hope when I start the steroid I will experience the same feeling as you :-), I am just very worried of it making the anxiety and panic attacks I already suffer from worse. I think I could handle anything else especially weight gain because God knows I sure need to gain some of my weight back (if not all of it).

junerainbow- please make sure your doctors listen to you because like I mentioned I have been undertreated all these years after being told I had only mild crohn's and now it's moderate/severe. You can always go see another doctor for a second opinion. I have been through 3 GI doctors and now am at a teaching hospital where I had my first appointment yesterday and I pray the crohn's will finally be under control.
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago
I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula
Medications I have taken for crohn's is..... Asacol and Entocort EC
Currently taken....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 5/12/2010 1:15 PM (GMT -7)   
all these cases of undertreated crohn's, mild crohn's.. and yet here you and I sit in similar situations... the mayo will be my third .....the university of iowa is a teaching hospital, mercy was second.. not a teaching hospital and now mayo... I just pray that Mayo is able to help me. And I hope that you are able to find answers. I don't understand any of this...

I am no longer on ensure.. the dr pulled me off of it.. but it was lactose and gluten free.
The dr told me today he wants me to stay on the probiotics for 30 days after the levaquin ...
and I have been watching my diet.

flare vs endurance event.. yep does feel like an endurance event.
xifaxan was tried- failed.
wondering if I should call dr back and ask to start pentasa earlier? maybe it would stop me from having the diarrhea?
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.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/12/2010 8:34 PM (GMT -7)   
Yes flares go on for years sometimes. I agree you have something they haven't found yet, don't think it's in your head you know your body better than they do. I've recently had to make the same conclusion myself. Yes my GI has years and years of training and even more experience treating us as patients, but I know my body and she's missed something I'm sure.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 5/12/2010 10:29 PM (GMT -7)   
June, the poops are still likely from the anti B's, with CD their effect is longer lasting. Also, you've started pro B's and this can give you poops too as your bacteria fight it out. So a little more patience if you can -- soft TP is a must!

Ensure alone will cause you D too. EAting some bran might be a good idea. I like it in muffing from, no raisins.

Flares last as long as they last. Hopefully the doc's will get you on a med that stops it.

With good thoughts for you, and all
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.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/13/2010 8:57 AM (GMT -7)   
In addition to the undertreated cases, I often surprised by the meds some people list in their "profile" - many of them are "old-guard" crohns medications. Sulfa drugs? Pentasa? Not exactly cutting-edge treatment when you think of what else is available: 6pm; biologics, etc.
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