Hi Inbetweener,

Well, that is a wonderful question and so terribly often ignored by the medical world...

So, here goes (in all probability a very long winded response):

1. No one can prepare you for your journey into pain, suffering, embarrassment, horrors, anger etc...

2. No one can understand what you are going through unless they have gone through it and even then everyone has their own specific voyage.

3. Do not expect understanding and compassion from those around you...They may try, they may wish to 'be there' for you, but honestly most plebian human beings will fall miserably short on comprehension and understanding.

4. After the initial surgery, once you are 'healed' no one will believe that you are sick because you will not look sick...or will look too thin, too fat, too pale, too tired too....

5. Most of the medical world (unless they are specialized in guts & pouches) will not understand or be able to treat you.

6. You may be exhausted, tired, worn out, tuckered out, dehydrated...and no one will get it.

7....now you have to start healing your heart and mind. Now you need to start aligning your dreams to your new anatomy. Now you make your body dance to the beat of a whole new drummer...so, this is where you learn to  a)  forgive your parents for giving you this disease if that is the case, b) forgive yourself for having gotten the disease, c) forgive yourself for having reacted too soon or too late or not at all to all of the symptoms, d) forgive yourself, your friends, your family, your spouse, your kids, your colleagues etc for not being there for you (the way that you need them to be there for you) when you needed them...In other words, in my opinion, you need to start to forgive the planet, the world, the universe first before you can start healing your mind.

8. (this is the hard one) You need to start to laugh again. You need to start to find humor in the world, yourself and your situation. You need to find JOY in your life. You need to find pleasure in the everyday things that you no longer enjoy. You need to laugh. If sex is on the table for you then you need to start to relax and enjoy that too. 

I guess, for me, the key words are Relax, Enjoy, Laugh, Fun, Sex, Food...freedom.

All of those words thrown into a blender and poured out on the table equal healing. (for me)

It is a long journey. Full of potholes. You need to cry. Lots. You need to mourn the loss, celebrate the successes and have a friend or confidant who can share both with you.

No magic, no miracle, just day-to-day hard work. And your friends here who are willing to hand hold you through it all.

Good luck

Sharon

Number four. 

My mind and body have healed but I still have to live with some exhaustion and some tiredness.  Especially lately. 

It is a long road.  I am 3 and half years down it.  Sign says 5 mph speed limit. 

Richard, you’ve come a long way through difficult times, and I am proud of you.  I experienced the same frustrations of being tired after my major surgery, but time and persistence helped me become my “old self” again.  I find that pushing myself a bit when doing things I enjoy has helped improve my endurance and I listen when my body tells me that I’ve done enough.  There’s nothing abnormal about being tired and exhausted.  It happens to everyone.  Take care!

Bill

Inbetweener,

I am 12 years post jpouch and still have a hard time with having an invisible illness. I have chronic pouchitis and so for me extreme fatigue is normal , i tend to be anemic and dehydrated most of the time and yes most people do not understand even close family ,and friends. I was even told about the potential of jpouch removal if i continue with chronic pouchitis without much remission. How do I deal with it? In the first few years post Jpouch I did see a therapist for about a year or 2. It was then I  worked through some PTSD( post traumatic stress disorder) i developed because of going through such an ordeal at such a young age( I was 16 when I was diagnosed then 17 when i did surgery). What a breakthrough it was to discover that and help work through that illness. It was extremely freeing. Anyway as an adult I mainly work on the weight of the ups and downs of this disease through yoga. Yoga helps calm my mind, my belly and provides a place I can continue to work on my physical, mental, and inner strength. Yoga is enough for me- but for many I know support groups much like this one are a great place to start as well. 

Good luck- it's not easy to calm the mind but know you're not alone

-Arpi

Thanks so much for the insight. Arpi, can I ask please what kind of yoga you do and how you found doing it at first considering all the surgery you've had? (i'm thinking internal scar tissue, core muscle weakness, risk of hernia etc) I am going to attend a yoga festival which is happening close by to where I live, to try to look into which type would be suitable for someone who's been split straight down their middle 3 or 4 times! PS Thanks for your replies everyone. PPS - this is such a little thing but actually I am finding is really helping...there is an App for your phone called HeadSpace which is meditation in very easy 5/10 minute mini sessions, which you build up as you get better at it. You can also purchase courses of these sessions which focus on for instance, acceptance, and I think it's going to really help. And you can do it anywhere, anytime, when suits you. 

Thank you everyone for your responses. Greatly appreciated. I have definately come round to thinking that no one is ever going to understand what we've been through, not really, unless they have gone through it too. But that's not their fault. Our family and friends do their best, and that's all they can do. And I think crucially, they've been through something pretty terrible too, worrying themselves sick about us and looking after us whilst we have been unwell. It's so easy then for them to assume that your 'better' because the surgery you've had was to 'fix' you, so that's that, all done and dusted. Let's face it, if we talked about the daily symptoms that we have to live with, pre and post surgery alike, we'd drive ourselves and our families nuts. So we shut up and keep it all in, for the sake of our families. So maybe it's only really me, that's going to be able heal 'me'...

I started with power yoga to help stretch while training for runs. And happened to fall in love with yoga. This was  2 years post take down and maybe a year after a surgical repair from an obstruction. It was a small class and the instructor was a friend so I felt comfortable and eased into it slowly. Though I will say I never did yoga with my ileostomy but I'm sure it's all the same . Currently I do hot vinyasa yoga which is intense but I'm addicted. I found alot to be easier when I was younger and now the adhesions seem to cause a lot more weakness in my core which also have caused major back problems. There are certain days I just can't get everything but the most important part of yoga is keeping up with your breath throughout class no matter what you can or cannot do. Also there are modifications for most everything so ask the instructor if there's something you can't do. Just a tip yoga festivals are not great if your new because they are so crowded you don't really get individual attention and you could become lost in the sea of people . But they are great at talking to teachers or studio owners in the area and might be great resources for you! I would suggest trying out a studio that offers 30 -45 min classes (which are rare by me ) and speaking with the teacher about your concerns in order to stay safe. Take it slow . I do mostly 75-90 min sessions now but started with 45 min classes initially. 

Good luck 

BillV posted:

Richard, you’ve come a long way through difficult times, and I am proud of you.  I experienced the same frustrations of being tired after my major surgery, but time and persistence helped me become my “old self” again.  I find that pushing myself a bit when doing things I enjoy has helped improve my endurance and I listen when my body tells me that I’ve done enough.  There’s nothing abnormal about being tired and exhausted.  It happens to everyone.  Take care!

Bill

Thanks Bill. 

Been going through the exhaustion thing again.  Feels like I just got out of surgery again.  But I think I caught something.  I was sent in for blood tests yesterday.  May be a simple deficiency.  I hope.  Not something you want to continue.   I have to work.  Fatigue or not.  It's hard to do though.  I have started feeling a bit better.  It was weird.  Like someone flipped a switch.  One minute I was OK.  Felt good and strong.  Next minute I had rubber legs and was exhausted.  Sleep was no help.  But I can feel it slowly going away.  I definitely feel better at the end of my shift.  That's a good sign.  Before I thought I was gonna pass out at times..

Mysticobra posted:

BillV posted:

Richard, you’ve come a long way through difficult times, and I am proud of you.  I experienced the same frustrations of being tired after my major surgery, but time and persistence helped me become my “old self” again.  I find that pushing myself a bit when doing things I enjoy has helped improve my endurance and I listen when my body tells me that I’ve done enough.  There’s nothing abnormal about being tired and exhausted.  It happens to everyone.  Take care!

Bill

Thanks Bill. 

Been going through the exhaustion thing again.  Feels like I just got out of surgery again.  But I think I caught something.  I was sent in for blood tests yesterday.  May be a simple deficiency.  I hope.  Not something you want to continue.   I have to work.  Fatigue or not.  It's hard to do though.  I have started feeling a bit better.  It was weird.  Like someone flipped a switch.  One minute I was OK.  Felt good and strong.  Next minute I had rubber legs and was exhausted.  Sleep was no help.  But I can feel it slowly going away.  I definitely feel better at the end of my shift.  That's a good sign.  Before I thought I was gonna pass out at times..

Richard, you may want to have your iron levels checked. This is how I felt just as mine began to drop. I assumed I was just teaching a lot of exercise classes, until my toes started to cramp and my head felt like it was going to explode. But it started with fatigue. Just a suggestion. Feosol twice a day has helped tremendously.

Lambiepie posted:

Mysticobra posted:

BillV posted:

Richard, you’ve come a long way through difficult times, and I am proud of you.  I experienced the same frustrations of being tired after my major surgery, but time and persistence helped me become my “old self” again.  I find that pushing myself a bit when doing things I enjoy has helped improve my endurance and I listen when my body tells me that I’ve done enough.  There’s nothing abnormal about being tired and exhausted.  It happens to everyone.  Take care!

Bill

Thanks Bill. 

Been going through the exhaustion thing again.  Feels like I just got out of surgery again.  But I think I caught something.  I was sent in for blood tests yesterday.  May be a simple deficiency.  I hope.  Not something you want to continue.   I have to work.  Fatigue or not.  It's hard to do though.  I have started feeling a bit better.  It was weird.  Like someone flipped a switch.  One minute I was OK.  Felt good and strong.  Next minute I had rubber legs and was exhausted.  Sleep was no help.  But I can feel it slowly going away.  I definitely feel better at the end of my shift.  That's a good sign.  Before I thought I was gonna pass out at times..

Richard, you may want to have your iron levels checked. This is how I felt just as mine began to drop. I assumed I was just teaching a lot of exercise classes, until my toes started to cramp and my head felt like it was going to explode. But it started with fatigue. Just a suggestion. Feosol twice a day has helped tremendously.

 

I went in yesterday to have my blood drawn.  Five vials so it sounds like a lot of tests.  I am sure iron will be one of them.  But I have always had high levels of iron.  But things have changed since then.  I will get the results sometime next week.  I still hope it is something simple like low in something!  Lol. 

Reading all the above is comforting to me as I know I am not alone.  Like everyone has said family, friends etc may have witnessed a lot and will never know how difficult, scary, weakening, maddening and painful this can be.  There comes a point, I know I am there where they are not wanting to hear how challenging it still can be.

I practice yoga as well, power yoga.  I stopped while very sick UC (UC for 31 years) and had stage one surgery; after six weeks I started at home for five minutes.  I was so weak.  I built up to an hour and yes you can do physical activity with a bag.  Second surgery, after many complications I was released from hospital and started yoga again, when I could.  Then final surgery and practiced after the six weeks, November 16, 2015.   I now practice five x week a 60 min powerful, heated class and I feel strong.  I will be 58 in a few months.  I squeeze my but cheeks at times during practice and can stay the hour.  Walking causes more issues than yoga, gravity?

I meditate daily maybe only five minutes some times.  All of this helps.  I am calmer, I accept my reality 100% for what it is and for what it's not. Some days I still feel sorry for myself and it doesn't last.  I eat healthy.  Chicken and romaine lettuce salad a lot.  No spinach! 

I also take probiotics, so very important and prebiotics ( inulin). A researcher at Mayo recommened the prebiotic to prevent pouchitis.

I do get tired, and nap daily. my yoga practice has saved me both mentally and physically.  I do the work daily to have the best future possible for me.

My best to all of you, so inspiring. 

Lori

I have had my ileo and after healing for eight weeks I felt great.  My strength and durability was and has always since then been on the up and up until a week and a half ago.  It was like switch was flipped.  One minute I was ok the next I felt like I just got out of surgery.  I am feeling better the past few days but it has been a tiring weary time.  

Maybe I got a bug or something. I don't know.  But I thought I was done with feeling that way.  I am glad I seem to be getting things back.  Scared me for awhile. 

Maybe my tests will come back and tell me something. 

Richard. 

First, Yoga and meditation is what centered me pre- UC, during my jpouch days and since my perm ileo surgery a year and a half ago. Second, when I find myself getting down at all, I try to remember to wait to a "shift" - nothing stays the same, it always eventually changes, so I know to look for and wait for that....I'm way more grateful for what I DO have in my life than I used to be and I have a lot less patience for people who complain about petty things (I'm working on letting go of this!) I also volunteer at our local hospital, something I probably wouldn't do if I had never gotten sick with UC. It helps me be more grateful and positive, too.

This is a great topic. How we cope is an extemely important aspect of our lives.

I don't know if it is because I was diagnosed with UC at age 15, or if it is just part of my innate personality, but I always seemed to be able to just accept how things were and not dwell on what "could have been if only..." I actually was grateful for the challenge, because it forced me to learn early on how to prioritize and not sweat the small stuff. I was still pretty much of a perfectionist on what I chose to do, but I knew my limits and stuck to them. Spending time in the hospital as a teenager inspired me to become a nurse.

But, it also meant I did not volunteer to do anything that I was not sure I could handle. This would frustrate some of my friends, who seemed to think I was avoiding commitments. I felt that if I did not make promises that I did not know I could keep, there would be less disappointment down the road. 

Nevertheless, I feel like I have had a rich, full life, without regret. I find joy in every day, even if it is not perfect (or even downright lousy).

Jan

I tend to agree with Jan here...being sick from a very young age, I personally believe, changes your outlook on life.

I was born sick and had my first 6 surgeries between age 2 -3....had another dozen by age 14. You kind of stop fretting about stupid stuff after that. 

Your value system is more grounded, more 'real'.

When in Sick Kids Hospital, I spent a lot of time trying to help other kids who were worse off than me...those that couldn't walk, autistic kids (yes, in the 60's and 70's they were often hospitalized...no one knew what to do with them)...I discovered that they responded very well to music (we had concerts on Fridays on the top floor of the hospital (it was a huge, sectioned kids playroom)...and both the deaf and autistic kids loved it...They connected with the beat, I connected with them.

All of those things 'healed' me at the time...I felt great playing with the younger kids, giving advice to the post op ones who were scared...I had milage behind me and was an old hack at it.

Death and dying never scared me so I never suffered from that sort of stress, I was more scared of infirmity, becoming handicapped or worse, losing control of my body completely...

I teach now. I coach. That is just a continuation of what I did as a kid. It makes me feel good. Cooking is also great therapy. Baking too. You get to created, see your results and then feed them to your loved ones (or eat them yourself). Immediate satisfaction.

(These last 3 weeks, since I lost my dad,  I have made about 10kg of fig jam, 5 jars of red berry sauce and baked about 22 cakes (weight gain to follow).

(I used to walk, run stairs or work out but now the arthritis is killing me)

We all find different sources of relaxation and healing. Some short term, some long term but rarely permanent...The PTSD is still lurking just below the surface for many of us...it hides better as the years go by but is still there...mine pops out at the least convenient times. 

I pray or light candles sometimes, talk to God or my dad (hoping that he is up there with him) and listen to sad music and cry (very cathartic)...

I am damaged...I know that...but maybe less so than someone who has had it all handed to them on a silver platter, never suffered pain or anguish, had a healthy body their whole life and never faced a challenge. 

That thought heals me the most...that maybe this has all happened for a reason, that there may be a purpose to all of this and that maybe I can spread some good.

Sharon