Chronic Fatigue After J-Pouch Failure: Seeking Advice

As I am new here, I would like to explain my issue in detail. I inherited F.A.Ps and had my large intestine removed 26 years ago. Six years ago, I was advised by my surgeon that a bunch of polyps were impeding on the cancerous side. This entailed the J-Pouch procedure, which I had for 8 months until the J-Pouch was connected. Life was normal as possible under the circumstances until 5 weeks later, I noticed that my motions had changed, became more regular, and more painful. After many interactions with my surgeon, antibiotics, and numerous types of creams, there was no success. I persevered with the pain for 5 years, which was quite draining mentally. My sister advised me to see her surgeon, as this is a genetic disease all my siblings inherited. I did this, and he advised I had pouchitis, which was never mentioned by my original surgeon unfortunately. On his advice, I had to have a permanent ileo. I had the normal fatigue after a general anesthetic, but the fatigue was festering to a zombie state where my legs felt like anchors. I had numerous blood tests, and all my levels were normal. I have spent a lot of money on professional help, both physical and mental, to no avail. The only thing that gives me any motivation to get out of bed is opiates (hate saying that), which I am trying to wean off. If any of my ostomates have experienced this, some advice would be greatly appreciated as I feel stranded. I would rather listen to someone who has experienced it rather than someone who has read about it. Thank you.

Well Wayne, first of all, let me welcome you to the site. It sounds like you've been through so much more than me already, but I know you will find many that have been in your shoes. I'm going to continue this in a private message.

Stay well, and reach for something more satisfying than the opioids. You'll thank yourself, Ritz.

Hi, sorry to hear that you had an experience just like my own. I kept the pouch for years and the original surgeon kept telling me things would change. I went down the Vicodin rathole and got a bit lost in it. Vicodin was the only thing that kept me from jumping off a very high structure. The pain was constant and horrible and ruined many of what should have been the most productive and best years of my life. Eventually, I had the pouch disconnected (in Ireland) and never looked back. The surgeon never said...this is finished, the J Pouch is finished, we have to take it out or disconnect. He was never straight with me.

The exhaustion was every day and unending, a soul-destroying experience. I think the main reason for the exhaustion was that my sleep patterns were destroyed. My body didn't know what time of day or night it was experiencing. It's called "the Circadian Rhythm" and it rules your energy levels, sleep levels, eating/not eating patterns, and if it is out of whack then you will never feel right. It took me a long time to get my energy levels back to normal and my sleep patterns back to normal. The problem is that when you never get to the stage of sleep called "REM Sleep" you never get any "real" sleep that makes you feel rested. My brother took care of me in those times and he has the patience of a saint!!! It was like I had narcolepsy, I could just drop off to sleep anywhere, anytime.

It will take some time for you to train your body to get proper sleep and this is the key to a halfway normal life. You will need a lot of patience!! Try to get on a sleep/bed schedule, same every night, maybe naps during the day. Eat lots of small meals throughout the day and not much in the hours before bedtime. You have to take control of your body and feed it what it needs...sleep and lots of comfort foods, ice cream, chocolate (within reason of course!! LOL), cheesecake was always my favorite. You have to enjoy eating and sleeping. Also, you should look for "Valerian Root Tea", Valerian root is a very good natural sleep aid used for centuries. One brand name is "Sleepy Time Tea", in Ireland I get it as "Stewarts Valerian Tea", I use two bags at a time, with honey.

I'm not sure if the post was old or new but I think this may help others get back to normal.

When you get Pouchitis it's over, the J Pouch has to go, sooner the better, I wish I had been told that straight up, honestly, would have saved me endless pain and suffering.

Eamon / aka Magoo XOXO

Hello Wayne and welcome to this site where, hopefully you will get all sorts of information and suggestions pertaining to your problems. My own take o this has little to do with stomas/ jpouches etc., but is more relevant to the 'fatigue' you mention. Eamon is right in that sleep patterns are important in this regard as this is when you replenish your vitality reserves ready for the next day. I used to suffer terribly from diferent types of tiredness and fatigue, but the doctors did not seem to know (or want to know) what I was talking about, let alone suggest anything to 'cure' it.  I tried a private clinic which was very helpful in relieving me of a lot of money but did little to help with the tiredness. Eventually, I cajoaled my doctor to refer me to a 'sleep clinic', where they diagnosed 'sleep apnoea' and prescribed a CPAP (Continuous Positive Air Presure) machine. Most of my 'fatigue disappeared after the first night of using this machine and I have not looked back in that regard. Now! there is a caveat to this story in that I also had a different type of tiredness/fatigue/ absolute exhaustion that would come overr me every now and then, which totally incapacitated me for a few minutes until I regained my strength to carry on. I was in hospital on one occasion ( for something else) and shared my concerns with the nurse on duty. She took my blood pressure and found it to be dangerously low. Who would have thought that something as simple as that would have such a devastating effect on my stamina. Prior to that  I had never had my blood pressure taken, so I was completely oblivious to what it can do.

The moral of this tale is to explore all avenues with regard to tiredness/fatigue etc, so that you can at least eliminate other potential factors ( apart from post operational effects). 

I hope you do find a solution to your problems as fatigue can be a life-changer.

Best wishes

Bill 

Magoo again, I meant to mention the best help for pouchitis. I still have my rectum and a tiny bit of colon attached, and this is enough for the colitis/Crohn's to raise hell down there. The best solution I've found for this is Flagyl, and if it gets really bad, I use Cipro at the same time. The combination usually works in days. Life was getting quite normal, and I even found the love of my life, Kitty, a bit late but better than never. If you have read any of my blogs, you will know what happened to my sweet Miss Kitty. I may never feel right or "normal" again, but I was loved by a truly beautiful person, a good soul, and I will never forget and never regret the last three beautiful years.

Eamon.

Great comment, Bill. I neglected to mention Sleep Apnea (US spelling). My Kitty had it and she used a sleep machine most nights, and it made a huge difference for her. She slept very well with the machine. The new machines are almost totally silent. Sleeping beside Kitty, I couldn't even tell if it was on. A sleep clinic could definitely provide some good info for you.

Good luck, Eamon.

Keep on fighting! Tomorrow will be a better day, we hope.

I have FAP myself. I had a non-functioning J-pouch fail before it was plumbed up for me.

Have they checked your B12 level? The portion of the small intestine used to make the J pouch is the portion that absorbs B12. Low B12 can cause horrible exhaustion, tingling or numbness in the hands/feet, falls due to poor balance, and confusion.

As the disease is genetic, all my siblings inherited the damn thing. I was the only one that proceeded past the removal of the large intestine to J-pouch and failure of J-pouch. My eldest sister suggested to me to have B12 checked, as she explained, as you did, the effects of B12 deficiency. Blood tests showed no B12 deficiency. Thank you for your reply.

Thank you very much for your input. As a coincidence, I am having a sleep apnea test tonight. As part of my routine, I am either ticking off culprits or finding an answer. I thought the word "zombie" was invented on TV, not inherited in a gene.