I want to die

JT80, God I know exactly what you mean..except I have C without the C.  I have air that traps my bowels and wont let anything move.  I am so tired of being ill with this and so is my family and friends.  I hate it when they ask how I am feeling so most of the time I lie but they can tell.  I cant eat anything, everything is bad for me or makes me sick, bloated, in pain...and I dont know what the answer is.  They are going to send me to another specialist 3 hrs away from my home, so I hope to get a appt soon.  Right now I am in California at my daughters for a vacation for a little over a month.

It is so hard being away from home in you comfort zone....ya know what I mean?  I have to plan my interventions as I call it...I have to do a enema every other day to relieve the gas that traps everything up so I can feel half way good, and not look like I am 9 months preggers...  So I have to wait for everyone to be out of the house to comfortable enough to relax to do it.  We are supposta go to Great America to ride the rides on Thursday, so I have to make sure everything is good on Wed night so I can go, so that means starving myself so I wont be swollen, sick, and possibly feel good enough to spend the whole day there.

When you are sick with this stuff it really gets me all worked up worrying about what will I beable to eat while I am there that wont make me sick.  If I wake up the day we go and not feeling well I will have to pretend like I am good...so that stresses me to, plus staying the whole day, if I am sick, and in the heat there is a good chance that I will pass out from all the walking and sun.

I don't know if I would rather have the D then the C but I think that I would.  I have not had any kind of D in years.  Question?  Have you been checked out for Celiac Spru?  My son has constant D and he has that, if you havent then you might get tested.

But I am here to tell you that I feel your pain, and that there has got to be some doc with a answer for us somewhere....I do constant research on this and I have been calling people that I know have this to see if that might know something,,,plus calling every doc I can get my hands on to try and get good help or answers.

So many people suffer with this daily and most do not have the extreme cases like we do.  So many people say to me Ya you have IBS but so does everyone and they just deal with it why cant you....HELLO,,,,,,they are not like me.  But some  dont understand and think your a complainer.....Hell no I am chronically ill...I have 2 good days a month if I am lucky.

So on a brighter note, would it help you if you started eating a lot of cheese and bread...good pluggers...but seriously.....keep you chin up, God loves you, I love you and want you to be well.  I keep you in my prayers nightly as I do a lot of others,,,so it takes me a bit to get to sleep....lol

Keep your stress to a minimum, and a smile in your heart....and pray that tomorrow is better than today....

Leslie

Hi JT80,
I totally understand your problem. I have suffered from anxiety since I was in my mid 30's, Im now 44. The heat makes me sick with D. I also have a problem with travel, My initial onset with D comes with knowing I have to travel long distances, however I was put on Ativan in my 30's and had taken it up to around my early 40's, I was sick of feeling like a zombie so I went off of it competely. My D was still around but I finally told myself over and over again "so what if you have a accident" what would really happen? accident meaning in the pants lol..and wow it took my anxiety down ten fold, and I try to laugh about it, and that also takes the anxiety down alot, but still it hits me a little, I just traveled over 1000 miles recently and all went well, but the heat did make a bit sick. I like to drink blackerry tea, but the product has to say "made with the leaves, seams it works best. Peppernint oil is great also but be careful not to overdose as it has side effects with other organs. I used to travel the world, but when the anxiety hit me in my 30's it sent me in a deep depression, I had insomnia and more, well years later I can say that laughter and people who are your friends and family who can understand this problem will ease your worries. I will not let this problem of mine over take my life, I am blessed because the love of my life totally understands and still she loves me and doesnt give me a hard time about my problem, I hope you feel better and turn on your a/c watch comedy on t.v, laugh, and try not to fear the fear itself, because that will keep you home bound for sure.

Leslie,

I haven't read too many posts on here because I'm usually on the ostomy board.  Have you ever had a sitz marker test done? This checks for colonic ineria.  I too was diagnosed with severe ibs-c and was taking 4 capfuls of miralax daily along with 4 tbsp of lactulose and amitiza twice a day and still only having pellet like bms twice a month if I was lucky.  My 4th GI recommended a colectomy (I had never heard of it) and sent me to a surgeon.  The surgeon ordered the sitz marker and anal mamotry (sp) but my GI didn't do them so I went to another GI (my 5th) and he did the tests and deteremined that my colon was not working at all and needed to be removed.  I had all but 2 inches of it removed last July and have NEVER felt better.  I really did not realize how sick I was.  This past winter was the first time since I was a child that I didn't get a sinus infection or strep throat; I didn't even get a cold.  I didn't have all those toxins building up in my system.  I have several drs due to allergies, kidney stones, migraines, etc and they all have commented how much better and healthy I look.  At first I was kind of taken aback by it because I thought wow did I look that bad, but now I just smile and say thank you, it is great to feel so good and I have been blessed with some wonderful doctors.

I do hope that you can find some relief.  I do know that there is always hope and to never give up because there is a doctor out there that can help you.  I traveled 6 hours away to one doctor and he sent me to my 4th GI dr which was 3 hours away and we now travel 3 hours all the time.  My GI, surgeon and urologist are all together and they are 3 hours away.  They have saved my life not once but twice; last year when I had my colectomy and just this past May when I had kidney surgery in my hometown, my past urologist overmedicated me and I got c difficile and the hospital where I live wanted to do emergency surgery to remove the rest of my colon and give me a permenant bag.  We called my GI and he said to come right up & he scoped me (without any sedation-ouch) but said no surgery and admitted me under my surgeons care to watch me then found out I had the infection so I was put in isolation.  I then switched urologists to one up there & he did amazing things for me but I needed 5 kidney surgeries altogether.  But through this I almost died from the infection and dehydration.  Oh yeah, this urologist is also my 5th one.  Sorry to rambler on but I want everyone to have a great outcome as I have.

So please don't give up hope, there is a dr that can and will help you. I will pray for you.

I hope you have a great day with your daughter!!!!

Judy

Leslie,

I so hope this will help you. Have fun tomorrow:)

Judy

To all of you thanks so much.  Had one of the worse days and nights that I have had in awhile.  Just found out that my daddy has AMLAcute Myelogenous Leukemia   and only has at the most a couple of months at best.  So my stress is through the roof, been crying since 5pm last night, did not sleep, and we are still going to Great America but tired.

Probably cut my vacation at my daughters short and change my flight as my mom and dad need me now more than ever.  Would love it if you would say a prayer for my daddy, thanks so much.  Leslie

My thoughts and prayers are with you and your family Leslie stay strong sweetie take care.

Hi jt80 & all,

First, my heart goes out to you jt80. Having a parent ill, especally terminal, is the worst. Being ill yourself on top of it all, well...'nuff said! I went through it with my mom just 2 years ago. Hang in there. Prayers are going up for you all, & prayer works!

I have had IBS-chronic diarhhea for so many years I can't remember not having it. Now it's complicated by Diabetes. The last few years have been so bad that I frequently had those "accidents" Peter mentioned. Last year my job required me to drive to clients homes & several times I had to go home (over 35 miles each way) to change clothes. I have now got mine under partial control eating the probiotic yogurts. I tried the once a day instructions for 2 weeks & saw little change, but then, in desperation, tried twice a day & my trips to the BR have been cut to usually no more than twice a day. I have been known to go up to 15 or 20! After a month or so I cut back to once a day, & sometimes I skip a day or two, & still seem to be OK. The urgency is still there with every BM, & even occasional incontinency if I've eaten something that disagrees with me. I have to stress that it's the probiotic yogurts b/c I ate tons of regular yogurt for years thinking the cultures in it were the same. They are not!

 

I, too, have noticed the heat connection as several of you mentioned. I just thought it was b/c I get migraines if I get too hot & so would get anxious, or maybe what I took for the headaches would set me off. I've learned something today, thanks y'all!

Lastly, I didn't know about the blackberry tea, but my Mom was an old country woman & used to always can up some blackberries & their juice, saying it was "good for diarhhea". This was probably an old Cherokee tonic. I didn't have my problem until after I married & left home, so I never tried it. But those "old wives tales" came from somewhere! As for the fennel, I don't know if it will help w/ the diarhhea, but when my children were babies, we lived in Germany & they sold a "Kinder Tee" which had fennel in it & it worked wonders for colic, so I'd bet it will help w/ the spasms. Thanks for reminding me. I'd totally forgotten this until now.

jt80, I know it's a difficult time for you. Try to remember you are not alone.

mmelly

mmelly, I really appreciate all the good thoughts everyone is sending my way.  Today is really bad for me...swollen so bad and cant go to the bathroom.  Going to have to do another intervention as I call it...enema.  Going to try and help my daughter get some work done today as I have changed my flight and will be going home on Mon morn.  God bless all of you with all your struggles....Leslie