Losing liquid and seeking general opinion on other things..

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LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 12/11/2008 8:40 PM (GMT -7)   
Of course it's to be expected that our D and BM's are all too frequent and I don't have so much trouble accepting this, but, given that I'm not really eating..anything...I'm just losing liquid only and finding the idea of leaving the house a little bit scary. I've yet to suffer from incontinence so far and I want to avoid it at all costs..I'm just wondering what those of you who have a similar problem do. I would say I'm afraid to try immodium because I don't want to suffer from constipation either but I'm not really sure that's possible when the only contents of my digestive system consist of green/brown liquid.
I just would really like to see my family for the holidays and I don't want fear of not making it to the latrine in time to keep from doing so. I tried getting into an earlier doctor's appointment but the earliest I can be seen is the 29 of this month.
The only good I can see in this, provided that the next humira shot doesn't turn it all around miraculously, is to get off of humira and try something else...

I was diagnosed with moderate to severe Crohn's disease but was not given the 'moderate to severe' part until AFTER my surgery for the ectopic pregnancy which could have exacerbated things to make it look that way in the first place. I didn't form a fistula until I was pregnant anyway and a week of antibiotics following my surgery for the pregnancy made it disappear. I have yet to have any similar problems. So, I am just back down to constant D, fatigue, and very rare occasions of blood loss which seem to be coming from the rectum as opposed to the ileum or colon.

I want to be able to ask my doctor about so many things without him feeling like I don't trust him, but it seems that in most cases that's impossible. No matter how much I like him I will always be wary of a doctor's opinion and prescribed treatment. Not to sound like a conspiracy theorist but the money lost on a cure for autoimmune diseases seems like enough to tempt those in the position to receive said funds to prescribe nostrums with a bit of soma a la Brave New World in the hopes that we feel it's working. I don't know..just very frustrated at the moment.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 12/11/2008 10:48 PM (GMT -7)   
I find that combination of immodium and xanax get me through most social situations without too much "bathroom paranoia". I don't get constipated either... it just delays the process long enough for me to enjoy myself for a few hours.

Sorry to hear the Humira isn't doing much for you yet... researching new treatments is never my favorite thing to do. And I totally share your skepticism regarding everything the doc's say/do. We have reason to be wary! But, places like this at least let us get a head start on their stupidity. I hope something starts to work for you soon!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/11/2008 10:55 PM (GMT -7)   
So basically immodium has the delaying effects of painkillers but without the grogginess and euphoria? Which is exactly what I'm looking for...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/12/2008 4:30 AM (GMT -7)   
Hi Any chance you could put a call in to your DR. to see if he could give you a plan until you get in to see him? Are you travelling by car or flying when you go home? How long you been on the Humira now? What did they say was causing the green pooh? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/12/2008 12:29 PM (GMT -7)   
I probably will call here in a little while...Alas I'm losing nothing but blood again mad
I've been on the humira since September so...I'm tired of trying new hard medicines. I would rather try and change things through diet and maintenance medication than suppressing my immune system(which isn't working anyway).

I don't think the past treatments were going about it the right way anyway...maybe I can try antibiotic treatment this time..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/12/2008 1:46 PM (GMT -7)   
Hi Never had the blood thing going on but it must be ver discouraging at times. Hope you can get feeling better soon. Navy seems to have alot of problems with the bleeding too. Thinking of you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/12/2008 3:16 PM (GMT -7)   
have you had stool cultures done for c dif? if so, and if they are negative, immodium may help you- just take a half at first if you think that you may become constipated. my d is at its worst in the am for the first 2 hours that i am awake. then it slows down. so i plan my day around that. hope that you feel better. don't give up on the humira yet- it takes time. i have more ok days than bad days now, and each month it gets a little better. we started at the same time.

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 12/12/2008 4:28 PM (GMT -7)   
Incontinence and the anxiety surrounding it is something that we all deal with.  The best I can say is that you learn to cope with it.  Most of the time, if you just do what you've got to do, the things you worry about don't happen.  Sometimes you will have an accident, and being prepared helps.  I don't do Immodium because long before I was diagnosed I discovered that even a small dose will stop me up for a couple of days.  But I will wear pantyliners or a pad to catch leaks.  Bring a change of clothes.  I haven't tried anti-anxiety meds, but I know some here use them to good effect.  I know you can't get in to see your GI between now and then, but your family doctor should be able to help you if it's something you want to try.  Depending on how comfortable you feel, maybe have a word with your family.  If you know ahead of time that there will be foods there that you can eat without making you sick or maybe a bathroom set aside for your use that could really help, too.
 
As far as the medical community, I think it's really important that we find a doctor we can trust.  That doesn't mean we shouldn't research treatments, ask questions, or express our concerns.  Do I think that there are some doctors, some researchers, who are more interested in making money than making us well?  Absolutely.  But I find the idea that the entire medical community is part of a conspiracy to bilk patients a little far fetched.  We just have to keep searching until we find the right doctor for us.  In the last two years I've had 3 bad doctors, two excellent doctors, one who's in it for the money, one who's come to the end of his knowledge with me, and one I have high hopes for.  A pretty mixed bag.  If you're asking questions in a tactful way and your doctor is getting upset it may be time to find a new doctor.  But try to keep an open mind.  If you approach him/her with the attitude that they're trying to take advantage of you, you'll never be able to trust them.

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 12/12/2008 6:42 PM (GMT -7)   
Far fetched but too frequent I think..

I'm pretty certain I was tested for c diff but I can't see any harm in asking again. At least I would have something more to go of off than 'maybe you'll get better, maybe you won't.'

At this point, blood notwithstanding, I'm beginning to care less and less. This doesn't mean an all out binge on bad foods, but I suppose I'll just have to start eating more and see. I don't like being a skeleton.

Thank you guys though...I'm not sure what I would do if I didn't have someone to ask questions to.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.

"He who has a why to live for can bear with almost any how."


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/12/2008 9:24 PM (GMT -7)   
L - sometimes when I coming out of flares I don't start feeling better till I start eating again. It might make me feel worse for a bit but then I kind of even out. I am one who uses immodium when I need to. I may not need to "go" for a day or two after but I never feel uncomfortable or constipated. Actually, I just feel normal. Regarding your family - is this your immediate family? Are you close? I guess if I had to have an accident in front of someone I would want it to be my immediate family. They are the people I know and trust. Would you feel better being there and maybe having an accident or being at home, alone for the holidays and having an accident. I tend to feel better around people. It is really easy once you let the anxiety win to keep letting it win. I got in a bit of a rut that way and had to see a therapist. If I were you I would take the chance and realize that the absolute worst that happens is I poop my pants, clean up, embarass myelf either in front of some strangers in a rest area or plane that I will never ever see again or in front of my family that loves me and accepts me. It would suck, but life would go on.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

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