In my head?

[Redsox34]

Hi everyone. I'm a 25 year old male and was diagnosed with MC about 2 years ago although I have had my symptoms for about 4 years at this point. Most of the time I manage along pretty well. However, the problem that I have now is that when I leave my house or am in a situation where I know I can't get to a bathroom right away (or it would be embarrassing to go) my symptoms get a lot worse. For example, going to a bar, or the mall or even a friends house is very difficult as I can feel myself get very nervous and usually get bad diarrhea and feel my stomach hurting/churning. Does this happen to anyone else? It seems almost more ibs like than MC related although my doctor is convinced it's due to the MC (don't know how that explains symptoms getting much worse under stress, though). I started on entocort about 2 weeks ago but haven't seen much of any improvement. I just want this horrible anxiety I have about doing stuff to go away! I hate sitting at home but hate getting sick when I'm out even more! Thanks for the feedback.

[tex]

Hi,

Welcome to the board. Surprisingly, your doctor is correct. (I say surprisingly, because most GI docs insist that stress is associated with "IBS" rather than MC). Please don't take this as a sales pitch to buy my book, because I will tell you anything in the book free of charge, in response to your questions. Anyway, my point is, the entire last chapter of the book is devoted to explaining my theory of why stress is the primary cause of MC, and that chapter includes references to over 60 medical research articles in the bibliography, to substantiate that it's not just a wild theory.

So it's not just in your head, there is a physical reason why stress affects us that way. Trust me, most of us are practically chained to our bathroom until we are able to control our symptoms and achieve remission. Your issues are definitely common among the members of this discussion board.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Leah]

Stress, stress, stress. What you might need instead of Entocort is an anti-anxiety pill. Actually, I'm not an advocate, but you do need to find a way to curb your anxiety. Meditation? exercise? therapy?

Leah

[LindyLou]

I've been struggling with the stress issue and IBD for what seems like forever! Actually it started with my last pregnancy which would be nineteen years ago. Prior to finding this forum 2 years ago my life at was a living hell! I had no clue as to the food connection, and to top it off, I was working as a flight attendant so I totally understand the fear of being away from home. I finally took an early retirement as I couldn't cope with it. Nothing seemed to work to bring myself into remission. My doctor has had me on Xanax for the last few years ago, then when medical marijuana was legalized in my state I started using that therapeutically for the last couple of years. Small changes occurred digestively but still not close to being normal. Well, two days after Christmas I had to go out of town for 3 weeks and of course since I was flying could not bring MM with me so I ended up doubling the Xanax dose and surprise, surprise! I have had normal bm's for the last two weeks! I know that the stress I experience can be extreme but I also know that I am a 'worry wart' and am trying to let some things go. I am what I would call a perfectionist and am trying to accept that the bar i have set for myself is at times way too high. Welcome to our family. The knowledge and support found here is second to none!

[Redsox34]

Thanks for the replies everyone. I enjoyed reading all of them. The crazy thing is that these aren't even stressful situations to most people. I used to be able to go to the mall or a friends house without thinking twice about it but now due to some bad experiences I am terrified! Anyway, I still try and have a life so tonight I am going out downtown with some friends for a couple hours. I'll take my Imodium and we will see how it goes! I've wanted to try anxiety meds for a while now but my doctor doesn't seem to be into that idea. Does anyone know how long it takes for entocort to start working? I've been taking 9 mg every day for two weeks now and haven't seen a huge improvement. Then again I can literally sit at home all day and be fine but once I get a call to go out the problems start so its hard to judge the drugs true effectiveness. I feel if I have a few good trips going out and begin to feel better the anxiety will take care of itself..

[d'libarian]

Carrying a Medic alert restroom card might help toward peace of mind:

http://www.myibd.org/RestroomMedAlert/index.php

le

[Joefnh]

Hello 'Red' and welcome to the group from New Hampshire....I'm guessing, but you might be in the Northeast or at least like the Bo'Sox.... Hopefully this upcomg year will be a better year for them.

So far you have received a lot of great information and it sounds like your on the right path with the meds. With Entocort it does take several weeks for most of us to see the benefit kicking in AND diet is a BIG part of achieving remmision and feeling better. With MC it seems a good 90% or more react to gluten (wheat products like bread, pasta etc..), soy and some react to dairy products. Initially I would at least cut out gluten to give the Entocort the best chance of working quickly

As far as stress....for any medical problem stress is simply a great multiplier. In my early years of developing GI problems stress did trigger events and it did seem like it could be IBS. While the jury is still out in the medical community there is most likely a direct correlation or crossover between 'IBS' and IBD's like MC or even Crohns.

I was diagnosed with MC and Crohn's disease in 2010 and stress plays a big role in both diseases.

To summarize the basics ...

-Continue with the Entocort

-Avoid at least gluten, soy and dairy for a while and then test later to see how you react

-Avoid any raw fruits and veggies until things have had a time to heal (well cooked is fine)

-Avoid all NSAIDS.....Asprin, Ibuprofen, Aleve etc....these play havoc with the GI system

-Avoid citrus juices as the acidic nature can tend to irritate....after a while you can add them back

The goal is to really baby your system by removing these aggravants to allow things to settle down and heal


Again welcome to the group

[DebE13]

I know EXACTLY what you mean..... I have the same problem. For example, this morning I was up early and wanted to run to he store before too many people start to crowd in (dislike busy places). So I left at 6 AM and felt fine but two minutes down the road I knew I had "to go." If I turned back I knew I would just stay home for the rest of the day so I reluctantly continued on and used the public rest room (don't like those either). I was fortunate to be the only one there. It's like my body just waits for me to get moving and then acts up. It's very annoying. Although I blame myself because I should have known better because I only used the bathroom twice instead of my regular four times. It's terribly frustrating to have to wait to complete "the routine" before leaving the house.

I think the minor adrenaline rush to get going triggers the D even though we're not really stressed- at least that's what it feels like in my case.

I'm currently trying to wean off entocort. I still had D at 9mg dose and it isn't much different at 3mg. I may not be the norm for entocort use. Others here have experienced C at 9mg and know they're ready to step down.

Have you eliminated anything from your diet yet to see if it helps? Joe had excellent pointers that should help you.

[JenniferS]

I am so sorry to hear you are having such a rough time. I do understand how stress can and often does increase with this illness. One "oops" can create fear of future "oops" in us all. I've also found my anxiety is triggered by my bowel's, and on days when my intestines are in upheaval, my anxiety goes up. For me, one of the best things I can do is find health. Although I have decided to get help to get me through this stage as I suspect I am not coping as well as I could be.

For me, the entercort took a great deal of time to really help, and I still have periodic problems. I'm very, very rigid with my diet, so I haven't really figured out why some days are rougher than others, although I suspect cross-contamination or "hidden" ingredients in things as I do much, much better when I eat at home and stay away from packaged foods. (I pretty much stay with rice, pork broccoli, carrots, and yellow zucchini, all cooked in one pot with water until it's very mushy. I've found if my veggies are not fall apart mushy, I have D. And I'm beginning to wonder if potatoes cause me problems.

Have you tried the elimination diet?

My GI has also mentioned a few times that there can be a nerve cause to nausea and diarrhea and has said he could give me meds for this. (Basically, he said something about the nerves in my stomach and digestive tract could be hyperactive, or something like that.) I don't know enough about this, but plan to talk to him at my next apt. (on Feb. 6th.) If he says anything that appears to be of value to others on this forum, I'll share. :)

[Redsox34]

Hi everyone. So as a follow up I did survive my night out but it wasn't 100 percent successful which frustrates me. We went to several bars and then a hockey game. I felt very claustrophobic in my seat at the game and didn't feel too well. After we left the game I also felt nervous at the bar an had to use the bathroom. Although everything was solid (sorry to be graphic) I still felt I needed to go. It is just so frustrating in so many ways as I sit here typing this. It pains me knowing how hard it is for me to date or even do common things people take for granted. I've lost people that were close to me because of this condition and it is so hard to let myself get close to someone. People meet me not knowing about the fact I have MC and think I'm a great guy but they don't know the real me.. The one who is paranoid to leave the house, feels sick a lot and is nervous about doing almost anything. I hate that and would give anything to feel better. Most guys my age go to the bar with the goal to meet women.. My goal is to not feel sick and make it home. I have not adjusted my diet much so maybe I will try that. However, my main problem is the anxiety. I almost guarantee you if I stayed home all night and watched tv I would have felt perfect. It's just taking me out of my comfort zone that causes me fits. Thanks for all your continued support and comments. I truly do enjoy reading all of them and the advice/experiences you all have had. Godless

[ant]

Dear Redsox,

Welcome from Hong Kong. We are all different....... but once the enotocort and diet settle you down you should be able to socialize.

Here is how I deal with bars:

Best substitute for beer (has gluten) is cider (no gluten). Most spirits are OK for me (just be careful of flavoured vodkas). Wine is also OK for me

I cannot eat most snacks at bars, but ask for (unstuffed) olives. Many bars have these in stock for their martinis (if they are stuffed just remove the centers). I also ask for any nuts (excepts peanuts or cashew nuts) if they have them. I also find I can tolerate various pickles.

If someone challenges me to a drinking competition, I order a shot of olive oil (or even half a glass) and dare them to down it in one (respect). It usually sees them off and makes a clear point about the seriousness of not aggravating your gut, without looking like a sissy. If they accept it easy to down.

If you stick to the advice you find on this board, it may take time, but I am sure you will get your life back.

Best wishes, ant

[jgivens]

Dear Redsox,
The fact that you are willing to keep trying to socialize and are not isolating yourself is commendable. None of this is easy, but I think it is especially hard when you are a fairly young adult trying to "establish yourself"--or just fit in with everybody your age. Ant has some really good suggestions for being at the bar.

While I was waiting for a diagnosis that I had myself convinced would be Crohn's or UC, I read a book by Andrew Tubesing titled Colitiscope. He was fairly young and newly married when he was diagnosed with UC and later, Mayo questioned that maybe he additionally has Crohn's as well. I was impressed with his humor and the great information he shared about how to cope with socializing and having to go to the bathroom all the time. He doesn't mince words about how colitis is undeniably a "crappy" disease!

You may be one of the younger ones to have MC, but know that there are just as many people your age dealing with Crohn's or UC and they too, wonder how to cope with socializing and dealing with the disease. This is all to say, that you are NOT alone in your misery. Though you may not have actually enjoyed yourself last night, it wasn't a total bust--you got out! When you go into remission, you will feel better and relationships will be easier for you. It is a matter of patience and God knows how I long for some of that patience myself as I try to stick to what I know isn't toxic for me to eat and wait for the pain and cramping to subside. (Today makes two weeks without D, but I have been walking around for the last few days feeling like it is imminent).

Just keep on doing the best you can do and things will turn around!

[hoosier1]

Hello Red,

I am soon to be 47 but have had these symptoms (only to be diagnosed several years ago) since about your age. And what you will find as you move along in the years, is that you won't put so much pressure on yourself about many things in your life, including trying to find a bathroom. With respect to social events that you may be missing, so what. If you are more comfortable, for now, and less stressed by staying home, then that is the best course of action for your body. I am confident that stress makes my body worse in multiple ways. You may have a lot of work to do in healing yourself before you can re-engage in all of those social activities. Activities that you may even find someday, weren't all they were cracked up to be. Trust me on this.

It took me a while, and by no means do I have it worked out to a science, but I have found unique ways of coping with the stress of going out in public, even on those days that feel risky. And I carry emergency meds just in case. For me, just one Lomotil will shut me down long enough to get out of that stressful situation. A valium every once in a while will take the edge of too. At least you won't care as much. Your results may vary. Now I don't recommend these types of drugs for everyday use, but we all need a little help in a pinch because as you know, it can be a very unpredictable problem.

Good luck on your journey back to full health.

Rich

[JFR]

Hi Red,

I have been dealing with digestive issues since I was in college. I am now 64 so that's a long time. For me acceptance has been the key. I used to ask myself "why me?" a lot and feel sorry for myself. When I turned that around and thought "why not me?" things got better and I could then accept what I had to deal with. Most of us here have been helped a lot by instituting dietary measures, eliminating a whole variety of things from our food, but most especially gluten and dairy. Anxiety is a physiological event as much as it is a psychological event. If you heal your intestines by eliminating the foods that are inflaming it then you probably eliminate the primary condition that allows stress to cause d to occur. You can also learn relaxation techniques like meditation and deep breathing that help quell anxiety. There are solutions but time and patience is required if they are going to work. You can figure this out and in the process figure out how to live your life in a way that you find both meaningful and enjoyable.

Jean

[tex]

People meet me not knowing about the fact I have MC and think I'm a great guy but they don't know the real me.. The one who is paranoid to leave the house, feels sick a lot and is nervous about doing almost anything. I hate that and would give anything to feel better. Most guys my age go to the bar with the goal to meet women.. My goal is to not feel sick and make it home.

Please be aware that the real you is still a great guy. While MC may seem to be in control of your life now, the condition is strictly temporary (unless you choose to allow the disease to remain in control of your life). You can get your life back if you are willing to take the bull by the horns, and make some serious diet changes, and treat those changes with the same respect that you would show toward toxic substances.

The truth is, the foods that cause us to react are indeed toxic substances, as far as our bodies are concerned. For us, they are no longer food — they are poisons, and viewing them that way makes the job of avoiding them much easier. And the sooner you treat them that way, the sooner you will be back to the great guy you used to be.

At one time, virtually all of us have been where you are, with our self esteem shattered, feeling helpless, and doubting that we would ever be able to enjoy life again. But we've all been able to muster the strength, and the perseverance necessary to develop our own individualized treatment program, to stop the inflammation from redeveloping, so that our gut could heal. Trust me, once you taste success, your confidence will return — you just need to stop eating the foods that are waging a war on your digestive system.

Remember the old saying, "You are what you eat"? For someone who has MC, that phrase says it all. If we eat right, we are in control. If we eat wrong, our disease is in control. It's that simple.

Tex