Tired of this!!

Wow..sending positive healing thoughts to you!!

Savannah, I hope you don't mind, but I read your post aloud to my husband and said, "This could've been written by me. See? This is what it feels like." He could only reply, "I know, I see what you go through." Most days, I'm just going hour by hour or work to chore to bathroom. It is absolutely exhausting. I so relate exactly to what you are describing. My migraines also came back with a vengeance, I suspect due to the everyday stress of trying to deal with my cranky pouch. You said you have a scope in two weeks. Can you get in earlier? I hold onto each appointment with such anticipation and hope. I find it helps because hope is a wonderful, necessary thing. I wish I had some great advice to help you. I can just say you are not alone. What we go through and for how long is simply sometimes unbearable. I hope you get some help following your scope.

so sorry to hear but know that most of us on site have been there and still are!!your story is like so many on this site people just trying to get through the day and always hopeful even when most discouraged we get a break..i am particularly sad to hear of the loss of your husband,mine has been an incredible support throughout my colitis and pouch troubles..

what amazes me sometimes is people i know thinking me a courageous,brave soul but i am not anymore than 1000`s of us..us humans are truly amazing and we somehow overcome things we could hardly imagine..sure it sucks to concern yourself about commitments you think yo cannot keep..but i try not to beat myself up over it..i let people know it is what it is..i am working on the scd..diet i try to figure out what i can eat looking for something that feels like a treat..i do eat fruit however,not overdoing but try to savor those moments..i let myself eat more things i might not have before..so if i cut the carbs as i do i add some more fats..thus enjoy a steak even bacon once in a while,homemade yoghurt with blueberries and walnuts and almonds i consider my look forward meal..i eat almond butter if i need that sweet treat..i can now after many years eat more salad foods and so i do within reason as well as some veggies that were of limit..i look for things i can make or buy that will satisfy me..i do not like to cck but make myself am almond bread from time to time..great satisfaction..there is a site called digestive wellness.com you might find some things you can eat and treat..emotionally i find exercise is a big big factor in my life ..and serves me very well under the circumstances ..find something you like to do and do it..some of my worst times i got through because for me the gym is a safe place where i feel normal and in control of a life that often feels out of control..try to get together with people who mak you laugh or just enjoy..keeps the mind off your condition..maybe even look into meditating some folks think it really helps when i was at my most worse it got me through..and most importantly get lots of sleep each day and make sure you eat something throughout the day..this helps you cope better with most stressful of times..and if possible go for some professional help to deal with your chronic condition..its no shame and can be a positive step in taking more control..maybe if you find yourself overwhelmed some meds might be in order..especially when you are sick of things its a sign to take some positive action and feel in control so important for well-being

and one last thing..be kind to yourself..you deserve it

hope some of this is thought provoking and helpful..

savannah one more thing once you figure out what is problem(unfortunately 2 weeks off..ugh!) perhaps the food issue of what you can eat and cannot will fall into place better..meanwhile do you not have anyone that you can go to dr. to get some relief..can you take imodium to slow you down gut,pep to bismo,..i take vicodine for pain for example,anti depression,or anxiety drug..,are there foods that are soothing for you such as the yoghurt i mentioned,maybe get a hold of the book breaking vicious cycle scd diet i suggest that because its very spelled out as to what to eat and mot eat and easier to follow and can be helpful for all sorts of gut issues..sitz baths i find helpful when i am in bathroom a lot and uncomfortable

Wow Rebe,
I love your response....fantastic...and very insiteful...
Savannah,
I have been living with this lousy 'gift' my whole life! It sucks (I am being polite here!)....
I had to take a few yrs off of work when it was so bad that I needed repeat surgeries and just felt like my life was over...I felt useless, a victim of my own body...like a hostage of this disease with no possibility for ransome...I lost 6 yrs in a black hole of hell and illness...and do not know how my husband or my marriage survived. (not really certain that I did...(Some days I feel like the 'body snatchers' stole my body and replaced it with this sick thing and won't give me mine back!)
I am now back to work and it is hell some days...I work hours away on public transportation and am scared out of my wits every morning when I leave the house...I fast from the evening before throughout the day...which makes me more irracible as the day grows long and by the pm I am ready to sit down on the subway plateform and cry.
I am not couragous, I am not strong, I am not any of the things that people believe...I am scared 24/7...terrified of a blockage in front of my students, or worse, a leak. Terrified of collapsing in class or not being able to use the toilet they are mixed, guys, girls, students, teachers...not fun at all...
All of this to say that we are human, fragile, terrified beings that just do our best to make it from day to day and that you are just as strong and couragous as any of us.
Just waking up in the morning and putting your socks on is a militant act of bravery for most of us and proof of the strength of the human spirit.
You are a fighter. People who love you (and know you) will have to learn to adapt to your reality...my friends know...I go Nowhere on pulic transportation outside of work..it is not a pleasure for me, just a pain. So outings are with hubby by car (I've got no license here)....I find that naps help me a lot to make it thorugh the day...Digestion takes it all out of me....and I don't have the strenght to do anything else once I've eaten...
I wish you luck and love because honestly I do not know how I would do this without my hubby....he has survived this with me for the last 15yrs (pretty much the worst ones) and I am terrified of losing him...
Hugs and good wishes
Sharon

Thank you, thank you, all of you. I agree that the human spirit is amazing: determined, tough as nails, but delicate and fragile too. It truly helps me to think of the universality of struggle. All human beings struggle and how we stand up straight and smile and take care of our kids and work and keep going without a second thought in the midst of illness, conflict, loss, and everything else is beyond imagining but is how it has always been. And we still think life is interesting and worthwhile or at least want to see the sun shining tomorrow or the next day or the next. Thank god for our kids and grandkids or else it would be too mondo bizzaro. Sharon, it made me smile to think of staggering out of bed in pain and putting on my socks and facing the day as a militant act of bravery. That was a great line and so true for all of us. Thank you all, again. Every time my phone chimed with a message from one of you I felt lifted right up.......

I too am sorry for the loss of your husband. I've had to give up all activities that I use to enjoy not only because of my j-pouch but because of other health problems, so I would hate to see that happen to you. I is good for your soul to get out and be around people and to volunteer always was a joy of mine so I understand how disappointing this is for you. Disappointing is probably a weak word to use.

My doctor sent me to a specialist at Mayo when he couldn't help me get my cuffitis into remission. It was a good thing as it was there that I also found out I have IPS too. I see you live in Minneapolis so that would be a short trip I see Dr. Edward Loftus, Jr. I'd seen him in 1998 for a 2nd opinion for my UC so think that is why I got into see him again. He's now the director of the IBD clinic so don't know if you can see him or not but he is awesome. If I didn't know better I'd think he had UC and a j-pouch too. He's asked me questions no other doctor or surgeon ever has and I am thrilled I am in his care. I still have problems but it's my pouch's fault. I've tried every way of eating I can think of in 3 years.

I wanted to suggest that you try emulsified fruit in a protein plant based smoothie, if you haven't tried this before. I tolerate fruit really well this way and add spinach and carrots too. I always have a banana a day in there and eat a banana each day if I don't have a smoothie. I use Almond milk to make the smoothie. I use a vitamix blender but have used regular blenders at many other homes and find they grind up the berries and other fruits just as well.

Just an idea if you haven't tried this before.

I hope you find answers to your problems and continue doing what you love.

Thank you TEMarie. I am scheduled to see Dr. Coelho so I hope he can help me. My over all health situation is complicated as you describe that yours is. I have a condition with centrally caused neuropathy in my extremities which is called Central Cord Syndrome. I had a very bad fall and was paralyzed from the chest down for awhile and ended up with decompression/stabilization surgery on my neck and after much rehab and good fortune I regained all motor functioning but there is lasting neuropathy in my arms and legs as there was permanent damage to my spinal cord. Ugh. Anyway, because of the mild paralysis in my torso, as well, I may have motility problems with my pouch. All of this is to say that I need a specialist who can look at the complexity of issues that effect my bowel functioning. So, we'll see how this appt. goes and it is great to have another name of a doc that you trust so much. Thank you. I have kind of decided that from here on out I will travel to Mayo and see the experts. I am tired of seeing docs I don't always feel confident about. And Rochester is my home town and the physicians I saw as a child so I feel comfortable there. I will keep you posted about how things turn out. I appreciate the connections on this site, especially without my dear husband David. He was a person who kept me centered so I still feel adrift without him. And TE Marie, thanks for the food recommendations too. I will try some of them.
Savannah

thank you sharon..

by the way i always say when referring to my gut .. it simply has a mind of its own!

Yes, yes, and yes.

Strength,
Gin