Having a tough time lately ...

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.

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.

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.

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.

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.

  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.

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.

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.