Having a tough time lately ...

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wrbeachbum
Regular Member


Date Joined May 2006
Total Posts : 47
   Posted 1/15/2009 10:38 AM (GMT -7)   
Hi everyone,
I have crohn's and colitis.  I have had this for 9 years.  I go through periods in time when it doesn't really effect me at all.  Other times, it gets so bad that I am hospitalized for months at a time.  Lately, my symptoms have changed and they seem to be getting worse, but different.
 
I usually experience pain, bleeding, nausea, fatigue, countless bloody stools, etc.  I usually have a flare that lasts several months and then tapers off and I will feel relatively normal again.
 
Lately, my symptoms are changing.  I have a lot of gas and it is very, very uncomfortable.  I also have severe diareaha but it is not bloody.  The urgency of the diareaha is incredible.  Often I only have about 10 seconds warning and lets just say I have had to do a lot of laundry lately.  The docs just say it is my disease and as for the gas, that is just my meds causing GERD in my stomach.
 
Needless to say, all of this has really taken a toll on my social life and my sex life.  I feel like I don't want to even go out anymore for fear that I will be passing gas all night or running to the bathroom (or both).  I feel like I have lost control of my life to this disease.  I am embarrassed just about ever time I try to go out because I will pass smelly gas or stink up someone's washroom, etc.  I just feel like I don't even want to bother anymore.  Honestly, I feel quite disgusting.
 
Has anybody been able to find any medications that actually work for releiving gas and the urgency to get to the bathroom.  Also, I know I have heard about a small bottle of air freshener that fits in your purse and you use one drop and it stops the smell in a bathroom.  Have you heard of this?
 
Thanks for your help.  I am feeling rather depressed about all this.
Trying my best!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/15/2009 11:11 AM (GMT -7)   
Hi Wr beachbum Yes I have some of the drops around here somewhere for a purse and I found it in the airfresher ilse for homes in grocery stores and such. What kind of meds are you on? Where is your crohn's located? I know dealing with that short a period to get to the bathroom must be a bit hectic. Sometimes Imodium are used if your Dr. agrees to a bit of it and sometimes gas X. Are you one that has blockages?lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


wrbeachbum
Regular Member


Date Joined May 2006
Total Posts : 47
   Posted 1/15/2009 1:59 PM (GMT -7)   
Hi, thanks for responding.
I have looked for the drops but not found them. I wonder if they are only available in the US (I am in Canada). Do you recall the name of them? Do they actually work?
As for meds, I am on Salofalk, Immuran, Remicade and prednisone when needed. I have started Lomotil to slow the bowel, but it doesn't seem to make much difference. My GI has recommended not using immodium, but my GP thinks it would be ok. I have asked my pharmacist to think about what might be good for me. She is a very knowledgeable and helpful lady.
The biggest complaints at this time are the frequencey, urgency and gas. I have never had to burp so much in my life! My stomach will be protruding and it is very uncomfortable. I can't eat very much because there is no room left and it becomes very painful. I am hoping my pharmacist has something like Gaviscon that she thinks will work. I have tried Tums and Pepto Bismol. The Pepto works for the burning sensation but not really for anything else.
Like anybody else, I have things that I like to do that I really am start to miss! I see people out jogging or just relaxing with friends and I feel so ripped off. If I try to get together with friends I am jumping up from the table every couple of minutes to run to the washroom. They do understand but it still gest embarrassing and I am never ever to follow the conversation. I cannot attend business meetings or anthing else where I feel confined to a room without a bathroom. I am even afraid to go for a walk! GRR! Have you ever felt like this? I do realize there are plenty of worse conditions in the world and I try to remind myself of that but I still feel pretty blue right now.
Oh, and also how could I forget the lovely vaginal fistula that makes my sex life so sexy! The truth is it has become pretty non-existent because I just am not physically able to engage.
Thanks for listening to all this. I need to talk to people who truly understand.
Trying my best!


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1496
   Posted 1/15/2009 2:30 PM (GMT -7)   

Hi wrbeachbum,

I spend alot time on here, and therefore read alot of posts. I post alot myself, but rarely respond to others, as I try to leave that up to the experts here, and ones with considerably more experience with this disease than I have. 

I'm responding to yours though because I'm truly very saddened by what you had to say. Particularly that you feel that you've lost control of your life to the disease. That you feel ripped off, and disgusting. It actually makes me sad, and angry, that life can be this way. I wish there were something I could say. I can only say, that there are some truly good people here, that I hope will offer you some advise. 

I hope you get some answers, so that your life could be restored to the standard you're expecting and deserve. Prayers coming your way.

Tom.  

 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/15/2009 3:22 PM (GMT -7)   

wrbeachbum--I am sorry to read you are having such a tough time right now...I just wanted to ask if you have had any scopes recently?  If so, what have they said?

I buy a small can of Lysol at Walmart (usually by the cashier) or even breath spray...spray in the toilet before I go...that can usually conceals the smell.

I hope you can find relief soon.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/15/2009 3:22 PM (GMT -7)   
beachbum-You are not disgusting..having these symptoms does not make you a disgusting or ugly person. I think they are things that make many of stronger and more beautiful people. Hardship gives us certain qualities that many people without will never be able to claim.
Any relief I have found from the frequency and urgency you've described(I don't enjoy doing that kind of laundry either...) is from imodium and bentyl as needed, and prednisone when things get really bad. What kind of medications are you on? And what kind of diet have you kept?
I know what you mean about social/sex life....it just doesn't happen for me anymore either, but I feel like it will. It's just a matter of good times and bad...
You've been going through this a lot longer than I have so I feel like I can't say as much to help, but I'll be thinking about you and wish you the best. Hopefully you can see a doctor soon about all of this to try something different?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/15/2009 3:30 PM (GMT -7)   
I sympathise, beachbum. I think we've all been or will get to that point sooner or later.

As far as your symptoms go, DeGas or charcoal tablets might be able to help with your gas. Check with your doctor before you buy any, and be especially careful with the charcoal, because if you take it at the wrong time it will absorb your meds and stop them from working.

Certain pain meds might be able to help with your d. This is something you might like to chat with your doctor about.

Best wishes.

Ivy.
Co-Moderator Crohn's Forum.


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/15/2009 6:17 PM (GMT -7)   

well in regard to that sudden urge, bananas slow things down and so does iron and b12.

i know how you feel..its constantly on my mind, even more so in social situations when i cant drink like everyone else and when i avoid certain situations because im afraid of you know what...

 


22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 1/15/2009 10:35 PM (GMT -7)   
I am brand new to this forum and even finding out there are other people with the same problems as me is amazing. When I read you comments my heart went out to you. I have been very sick with Chron's now for 4 years straight and tried every medication known and been in some trial studies too. I don't know much but what seems to e helping is lots of sleep,no over commitment to anything and a chinese medicine Dr. who has given me who knows what!! It is working a little better than anything else and so I am all for giving every avenue a try if need be. there are Dr.'s with Natural path studies and a wide view of advice is always important. Just know the end decision is up to you. You do have some control. I got house bound for awhile and it was my own fault. I could go in my back yard or not. I could put on a diaper which is my salvation these days and go out with a little less worry. I don't eat if I am going to be around people and the gas lessens for me. Maybe non of this helps but I will say a special prayer for you tonight.

wrbeachbum
Regular Member


Date Joined May 2006
Total Posts : 47
   Posted 1/16/2009 10:11 AM (GMT -7)   
Thanks, yes, that does help! I agree not eating does make a difference to the gas level, but often when we go out it is for dinner or something. Also, the weight loss is a problem.

I have not tried the diapers yet but I am very tempted to. I guess I feel a bit silly about them. Didn't think I would be back in those until my geriatric years!

I am certainly willing to give chinese medicine a try, and maybe will give them a call today. No point sitting around doing nothing!

I do try to get plenty of rest and not take on too much. Sometimes my ego will get the better of me and I will think I am superwoman again, but then my body usually shuts that down pretty quickly.

THANKS you guys for helping me to feel a bit normal and not alone. It is awesome to know we are here for each other.
Trying my best!


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 1/18/2009 10:04 AM (GMT -7)   

  idea beachbum,

   Have you noticed the "resource center" in the menu to the right of these posts? Sometimes low residue or carb and starch restricted diets can slow transit time and/or help prevent some of the gas. Sometimes I fast for a few days on the soup from Jordan Ruben's Restoring your Digestive Health. It is called Brasco Broth (Google Brasco Broth for a recipie) and helps me gain control of my symptoms when things get out of order for me. I do not add the chicken feet, but they are good for adding healing collagen. I often fast on the strained broth for a few days to let my system calm down. I have managed to avoid the diapers so far with this and eating a organic black spotted banana when things get to fast to make it to the little room. I have had a little of "that kind of laundry" though.

   As you already know, it is extremely important to get enough rest. I take half a dose of a good bone builder like Jarrow Bone Up at dinner time, then a Nature's Life Magnesium Malate at bed time to help me relax and sleep better at night. I started this when I was sleeping about 45 minutes a night , and it has helped.

   When my sleep patterns were really bad off, and now if my energy levels drop, I use 1-2 Co-Enzyme B-Complex made by a company called Country Life in the morning an hour before I put anything on my stomach. Crohnies like us do not always utilize B vitamins well because of malabsorbtion and lack of intrinsic factor.   B vitamins control our nervous system, including our sleep patterns. This is a full B-Complex, and I started using this after sub lingual B-12 worked well for me and I realized that I needed the full range of B Vitamins to be as well as possible. I think I absorb this well, and several of my Crohnie customers in the natural foods store where I work report that it works for them.

    In my work enviroment I am in a position to try many things having co-workers who practice reflexolgy, and medicine from the far east. Sometimes they do seem helpful.

    These things help me to be proactive, and feel as though I have some kind of control over my life and body, and it is my hope that a few of these ideas will work for you, so you can get out and bum around the beach as soon as weather will allow. I found this forum last June, and the people here are amazing. I have been trying to learn to laugh at myself, so I often read and post on the silly threads where we make fun of ourselves, or imagine what we would be doing, if we were not so weak, ill, and friendly with the white idol.


              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

Post Edited (Margie11) : 1/18/2009 10:13:01 AM (GMT-7)


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/18/2009 10:44 AM (GMT -7)   
Hi--The drops you are talking about are Just A Drop---available on-line. Someone here rec'd them and I just got 2 little bottles. Not miracle workers but they help.

I have been on codeine for the D--sometimes it helps a lot and sometimes a little.

As for the r-v fistula, I can empathize---have been dealing with it for 7 years. I wish I had good advice. When it's calm, my sex life was good. I'd get breaks where there wasn't drainage so sit baths or wipes were good before. Telling your partner he should clean ---even if he doesn't see anything afterward---is a very good idea. There's a lot of bacteria with the r-v.

As for the sleeping. Well, a half tab of xanax is helping me now. I wish I had done that years ago!

Best to you. We are in this together.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08; cipro; supplements: MSM, e, selenium, C, B complex, multi, iron


Maranza
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/18/2009 5:37 PM (GMT -7)   
My husband was diagnosed with Crohns about 10 years ago. While his symptoms are not as severe as those you describe he does have frequent bouts with diarreha (sp?) and while everyone's sh@* stinks, I find his to be unusually foul smelling. I attribute it to the Crohns and I have noticed that it does not always mix well with certain air fresheners. Sometimes the combo is worse than if he didn't use anything at all. We have found that mixing a little Scope mouthwash in a spray bottle with water cuts the smell quickly (we learned this from a home nurse when my dad had a perforated bowel and came home with a colostomy bag). Also there is a product called XO ( www.cleanreport.com) that you mix with water - putting a little in the toilet prior to using the bathroom helps. Another is called Poopourri (www.poopourri.net) which also goes in the toilet prior to use - also comes in a small purse size vial that you can take with you and spray the air and use in the toilet.

kemperca
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 1/18/2009 7:12 PM (GMT -7)   
I am Canadian and I have found "Just a Drop" in Walmart. It is used prior to going to the bathroom and I find it works really well... Hope this helps some

I am a 45 year old Canadian, living in Northern Ontario. Just recently diagnosed with Crohn's and Colitis Nov '07 ... Had a Gastric Bypass Surgery in Feb '08
 


Nana CC
Regular Member


Date Joined May 2007
Total Posts : 121
   Posted 1/18/2009 9:36 PM (GMT -7)   
I know this will not sound good to you but I am so happy to hear that someone has my exact symptoms. I had the sypmtoms long before I knew I had Chron's. I found out for me the best I could do in social environments is to just be up front about it and have a sense of humor. Now I can say a lot of time my gas doesn't smell (at least not to me) but I cough I pass gas, I walk I pass gas and on and on. I have tried all the diet changes and nothing seems to help. So at work and with friends they all know I pass gas with no control over it, so if I'm having a bad day with it I just tell them " don't walk behind me today or there could be problems". If it is a really stinker and someone notices the smell I tell them sorry about that, then I try to go ahead and have a BM because that seems to help. As for the urgency, when needed I use an maxi pad and carry spares in the car. That way if I start going before I make it to the bathroom at least it's not on my clothes. I've worn the briefs but I try only to wear them at home because they are bulky and hot when trying to work. Also there are times I live on the immodium for short periods. For me it will at times give me a 24 hour period of no D if I have taken enough to get me there. They also now have the advanced which is suppose to help with the gas but can't say I've noticed much difference there.
I hope this helps even just a little. If you look at like this is something everybody does, maybe not as much but none the less everybody does it it might not seem so unnatural. We have to enjoy life anyway we can.
Diagnosed 4/07 with Crohn's after hospital stay. Meds: Asacol, Librax, Azathioprine, Prednisone, Prozac, Buspar, and Xanax and percocet PRN.


nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 1/18/2009 10:18 PM (GMT -7)   
I sympathize with everyone in this boat. Been there, done that, still doing it after 40+ years of Crohn's. If someone ever comes up with a miracle remedy for gas, bloating, diarrhea and cramps I'd sure love to hear about it. I won't even get into the phobia I've developed toward public restrooms. Oh I know there are worse things to deal with, but when it comes to embarrassment I can't imagine what could possibly top this.
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