Why cant my body go into FULL remission?

[Crohnsnewbie]

I've still been on Lialda for almost 6 months and now I go less and some of my urgency is gone thank God! but I noticed even on days where I have "d" only 3 times......I tend to go more WHENEVER I get out of the house or know that I'm going to later or if I know people are coming over etc. I also still get random pains, body aches, gassy, bloatedness, and still sometimes have 30 minute battles with the toilet at a time!!!! I missed a job interview because I had an infection and then got a very bad cold at the same time. I don't know if I can apply for a job at all right now that's outside of the house. Whenever I go out my symptoms act up! Even if I calm down!!!!! ANYONE ELSE LIKE THIS?

Food has nothing to do with how much I poo or don't poo. One morning I can be sensitive to milk the next I can be fine. It's a guessing game. Besides that I eat whatever as long as it's not too greasy, oily, or raw fruits or veggies!

Then some days I go 8 times but all day I feel like I have to go now! But in reality on certain days when I go the 8 times it's one little nugget per time I go to the restroom! Other days I have a lot of "d" per bowel movement even if i only go 3 times. I'm at a loss for what to do. Any advice?

* I ALSO GOT APPROVED FOR MEDICAID THANK GOD! NOW I WON'T SUFFER MUCH LONGER DUE TO CROHNS hopefully!

*I honestly can't wait until I work in Medical Transcription at home by end of year I'm working towards that everyday

 

[mickey]

Taking a stab at it, do you get anxious when you are going to do something or leave the house? An excitement? Perhaps you carry stress/emotion in the belly and then it relaxes/releases when you heading out? In my late teens I did somewhat the same thing. I found it helpful to take deep breaths the morning I would wake up, relax, eat well and take things a little slower. It was as though the moment of excitement would release everything. It got to the point I did not want to eat, since it seemed to go right through me. I would suggest a yoga class or reading up on meditation, etc., to release stress otherwise and keep the body in a more calm state. Once my bowels go used to that it improved. Have to say that a good diet is so key as well. Eating smaller meals throughout the day worked better for me during that period. May help you. Good luck!

 

[Crohnsnewbie]

I've always felt anxious but now it seems whether I'm excited and happy, or stressed and worried, or just feeling sleepy or bored it doesn't matter I just end up having to go more! When I go to the grocery store whether I'm alone or with someone I go up to 2-3 times in a n hour!!!! sometimes even only half an hour or 45 minutes!!!!! I excercise all the time, yoga isn't for me. I read the Bible and it calms me but when I know I'm going "out" I still end up having to go a lot. I'll even use the restroom 3 times in a row before I walk out the door just to make sure I'm okay

 

[mickey]

Sounds like your colon is truly spasming. Are you on meds for that? May need some time off of foods to calm stomach. Hopefully you are ignoring carbonation, alcohol, and anything else except pure herbal teas or water? So many of those things can trigger the belly as well.

Have you thought of a liquid (broths, ensure type fluids) diet for a week or so and then slowly return to a bland diet? Perhaps that can help calm your belly and reset the body, so to speak? Sounds like you are being triggered by something; which can be both emotional and physical.

 

[Crohnsnewbie]

I have a few bentyl left but I'm careful when I use them "usually when I go out" but of course I still have issues UNTIL I get to a place most of the time. Docs said they wouldn't give me anymore pills to help me with spasms because after bentyl is out they can't put me on more or on anything else like it

I can't go on a liquid diet......when I go out or before I go out I can't even drink water for a few hours or I'll have to poo. Liquid alone would make me poo a lot! I try to dehydrate myself so that I can stay out longer whenever I do get out for awhile.

I have been having Sprite but even when I don't it's the same......

 

[mickey]

If liquids (i.e., broth) would make you defecate, do you think you are "full"? Ensure will enable full stools, but clear broths (i.e., tea/broth) should not.

I would suggest you eliminate Sprite or other carbonation, as that can also irritate the bowel and trigger it. Have you tried boiling water and adding a piece of fresh, peeled ginger? Let it steep, like a tea, or bring to room temp and drink like water throughout the day. It should help calm the belly.

It is a crap shoot, isn't it? Ha, no pun intended! Hard to figure out how to calm it and keep it calm for a while for you to heal. Do you take probiotics daily? That may also help.

 

[Crohn'sFor Life]

For me, remission meant no blood in my stool. But the urgency and the feeling that I always had to go was always there.

Now there is no urgency and I never feel like I need to go.

 

[Manzyb]

ugh, sucks doesn't it? I've never been in remission yet. It's been 13 years, I'm hoping it happens at some point!

Even if I don't think I'm being anxious or whatever about leaving the house or getting to a bathroom, I think a lot of it is subconscious and maybe just not aware of the "anxiousness". Honestly, I'm not saying its in your head, but for me, I think that even when I don't think I'm nervous anxious or whatever, I still am! It's just always something I think that is in the back of my mind.

 

[Manzyb]

Why won't they give you anymore bentyl?

 

[Crohnsnewbie]

doc office said I can't take anymore than I was given. So they're not even willing to put me on anything except Lialda until my June appt.......this June appt was made back in October....yeah!

 

[Terriernut]

I too used to have a 'problem' whenever I went out. Funnily enough, I was ok when I was driving to work. Only a few instances where there was an issue. It was anxiety, begetting anxiety. I would be worried I'd have an accident (of which I've had MANY). It got to a point where I hardly left the house except to go to work. Thank goodness for grocery deliveries!

But just being on mesalazine isnt enough. At the very least a short course of prednisone would give a large improvement. And it's an inexpensive drug. Can you tell your GP to at least give you a short course of pred to help you until your appt in June? (not advocating pred, but it does work!)

 

[Crohnsnewbie]

I'm afraid my face would get puffy if I got on that! I really don't want that to happen, I'd cry everyday if my face looked overweight I also heard any steroid even if used for a short period of time can give you diabetes if you have crohns. Now that I have Crohns I want to be offered meds to help me get better but at the same time on this site I hear bad things about all of them and it scares the poo out of me. No pun intended lol ;(

 

[Terriernut]

If you arent on it that long, your side effects will be minimal. Honestly, we vent about pred, but it works, and it works fast! Besides which, your face wont necessarily get fat. Mine only did once, and that was when I was on 50mg for MONTHS on end. Short courses tend to not give you moon face. But it will make you feel better and reduce your inflammation. It doesnt give you diabetes generally either, that is rare.

The side effects of any crohns medication can sound dire. Please, dont let that put you off taking them and getting better.

 

[2thFairy]

Being temporarily puffy versus not having a life at all....? The side effects of prednisone are not great, but it can literally save your life at times.

 

[PVail]

I gave a music career because of the never ending need to pooh. I think its normal for IBD victims. There are a lot of trigger foods and I now try to avoid them all and i feel that it doesnt matter what i eat. Getting excited and stressed does make everything worse. Recently I was going to a concert and my wife wa ready to kill me as I couldn't finish in the loo .I will take the drugs to get my life back, with out question. The mesalazine does give you the sensation that you have to go but I think it certainly helps reduce the frequency of D. It is a maintanence drug and it will not stop the symptoms so I was told so I personally am hoping for something stronger regardless of its reputation.