5 years on since jpouch

I've often suffered from fatigue, lack of energy, enthusiasm and desire.

Initially, it was suggested a side effect of the Prednisone steroids, of which I had been taking on and off for years and prior to the removal of my colon. Then it was blamed on disturbed sleep due to awaking to empty my colostomy bag, sometimes twice per night.

I've since discovered, that my fatigue and sleepiness could possibly be due to dehydration and the loss of electrolytes.

Whilst awaiting for my takedown surgery, I dehydrated many times, to such an extent I was admitted into hospital by Ambulance on each occasion.

Whilst in Hospital, my only trearmeant was IV rehydration, which made me feel totally energised.

Since and as well as my normal comsumption of fluids, I ensure I drink additional glasses of fruit flavoured water (what we in the Uk call fruit squash or cordial), often throught out the day.

I also ensure to drink a glass of squash just before bed and one first thing in the morning, plus I have one on hand should I need a drink during the night.

Whilst sleeping, that's 8 or 9 hours without fluids, which without a colon to absorb fluids from waste matter as we sleep, isn't ideal.

I also add the St Marks emix solution to my glasses of squash, which replenishes the electrolytes I either loose or don't absorb.

All of the above, initially appeared to make a difference but I still tend feel lethargic, fatigued and lacking of energy & enthusiasm most days.

Thanks for posting.....I might be opting into a Jpouch, I am 30 but had an ileo since 20. Before having surgery at 20....If I would have lost 7lbs and put only 10lbs on bench press, I would have had the state Record for Bench press at weight. I parlayed my weight training after my ileostomy. I took 4 months off training,....and might have developed a hernia( not from lifting )...this actually happened while not weight training, funny how things work. Doctors are conflicted. A MSN from C.C said it was a parastomal hernia....2 mins examination, just looking at it. My gastro said, there is no hernia, he spent 6-7 minutes examining, and even sticking his finger into the site. I asked him many times, his answer was upon examination, no hernia. He referred me to a surgeon, who evaluated it for 30 mins...seriously, poking around it, pushing round it, he concluded with the gastro, no hernia. He also said a C.T scan revealed no hernia. He did note there was a slight bulge and both sides were not symentrical, but he indicated this is normal for an ileo to not be as symetric on one side as the next. So, I had a routine visit with my G.P...and I brought up if he could take a look at my Stomach. While lying down, he said definately no parastomal hernia. He then felt on spot, not on my hernia, but surgical site....yes the long one going through the middle abdominals. He asked me to do a crunch, he said he found a hard small spot. Then it would go away. I then while standing up and asked to see if he could look this way. He did note a bulge, and said it might be a ventral hernia( on the surgical site....little above belly button ). He said no paratsomal...so now I confused. All the while, I am a canidate for jpouch surgery, and a one step procedure at the C.C......Bc of good health, and no drugs....one doc asked if I took anabolic steroids, that I would be a select few who can do a one step procedure. He cannot guarantee Laproscopic, but said he would try if I elected to- I don't have to have an surgery in regards to reversal. 

My questions, what do you guys think.....I got so scared to do a reversal bc I seen horror stories, and the two patients people had me refer to who had a jpouch, were struggling. One was smoking cigarettes like crazy to no go back to an ileostomy, I guess he had it for 9 years and was struggling...and found tabacco worked to treat his remedies. So I never followed through. However, with the possible hernia, non hernia.....and being a one stage canidate for reverse......the wheels are turning. I am 60/40....I would rather keep the ileo til I finish all schooling, but I will not lie it effects me everyday. I cannot say I have been happy for one week with an ileo. Also, with the Jpouch, my G.P said, he only seen bad ventral hernias in those who got reversed. He said I was the first he seen with a possible ventral hernia( which who knows if I even have one ) with no jpouch. 

So besides peoples thoughts.....how are the hernia rates with jpouches? Understand, weight training is a part of my life. When I say raining, I mean lifting for muscle mass. Sorry if I hijacked the tread....just figured, I would ask.

I've had my j pouch for five years now as well.  

In  regards to your fatigue, have you had your iron levels checked? I have to go  for periodic iron infusions to keep my levels up. Oral iron doesn't help me. I have come to the conclusion that its definitely an absorption issue for me. 

Strange:Sounds like a blessing in disguise, you having to get that IV drip.  You learned what you were missing at that moment.   It's always a risk that high frequency equates to excess electrolytes loss.  

Crazy1:  This sounds like my story. I remember never wanting to risk having colitis or surgery issues again and refusing the jpouch.  Why go through even more risk when the ostomy is enough, right?

We all are different but I still thank my father every day for pushing me in the other direction.  Had he not pestered me I would have kept the bag and been always worried about blowing a hernia while weightlifting or rock climbing etc.  Your mileage may vary but thats my experience fwiw.

Marianne:  Yes agreed. Maybe a good idea to check not just for haemoglobin levels but for Iron.  I wouldn't mind a good blood panel work up beyond just a CBC to see if there's anything else going on in there.

My dehydration wasn't due to high output; I had a temporay loop ileostomy, which diverted my output away from my newly created J pouch, into the colostomy bag whilst it healed.

Before J pouch surgery, my body had become accustomed to absorbing fluid via the small intestine albeit not sufficiently; now a proportion of my small intestine had been constructed into a j pouch and I wasn't absorbing a sufficient amount of fluids from what remained of the small intestine, regardless of  what I was drinking..

Crazy1.... Only you can decide whether to opt for j pouch or not, however, from my own experience to opt for the J pouch was the best decision I've ever made.  

My surgery was carried out in 3 steps and each proceedure was via open surgery. My colon removal was an emergency proceedure due to a UC flare up years earlier.

After recovery, it was believed I had Crohns rather than UC and therefore not a candidate for J pouch Surgery, although I believe such a mandate is no longer the case.

After many years with a stoma, no medication other than Loperamide and no flare ups what so ever, it was decided I may not have Crohns after all; now a candidate for J pouch surgery.

The main reason I opted for a J pouch was due to body image and the break up with a girlfriend after 6 years; I honestly believe, if my girlfriend didn't break up with me, I would probably still have a stoma now and probably would have never even enquired as to whether J pouch surgery was an option.

Before my diagnosis of UC during 1993, I lifted weights, to bulk up and acquire definition.

Many UC flare ups and dramatic weight loss interfered with my routine and I often left hospital weighing 9 of 10 stone (126-140lbs)

After my colectomy during 2005, eventually, maybe 18 months later, I attempted to focus on regaining my fitness but my energy just wasn't there.

Using the words of one of my Surgeons, I adapted well to life with my Stoma; and I must admit, although I hated the Stoma and the colostomy bag, it never interfered with day to day activiities.

As my Surgeon said, we adapt;  the routines, changing of bags etc all becomes our new normal.

When I had the stoma, the left side of my stomach bulged out more than the side with the Stoma and although not defined, my abdomen was relatively flat.

I don't believe there is an increased risked of developing a hernia after J pouch surgery, none of my surgeons or consultants have ever mentioned there's a risk.

After J pouch surgery, it's normally suggested to refrain from lifting for 6 months.

Since takedown, life is good, I no longer see a colostomy bag hanging from my stomach when I catch a glimpse of myself in the mirror, I'm happy to look at my own reflection now.

I've always been able to eat whatever I like, with no adverser effect, which has remained the same since the construction of my j pouch.

BM's are 3 - 4 times per day, sometimes 5 maybe even 6, it varies so much from day to, although I rarely awake during the night to use the toilet, other than to pee.

There is never any urgency and I can go for a good couple of hours between toilet visits, although, it varies so much from day to day.