I was the 13th to have a J pouch in 1984 in Scottsdale, Arizona, It has done me well I had it redone in 1999 and generally have done well with it. However, recently I have been diagnosed with kidney disease Stage 3+ and am having a lot of problem with my electrolytes. I dump potassium (so have to take 5 potassium tabs a day). I have low sodium (so kidney dr. took me off of diuretic). I have no energy, am exhausted, tired, it is hard to pull myself around and I can do very little. I am 75 years old. Does anyone else have a similar problem. I have been getting weaker and weaker since Feb. In Feb. they checked my J pouch for pouchitis and the doctor said the pouch was in good shape. I need to get my energy back, Can anyone help with suggestions? Thanks Mary Loar
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Mary, it sounds like your pouch is probably still doing just fine. You do have to get a handle on your kidney disease. Have they looked for a cause that might be treatable?
There are a few things to focus on.
- You have to get your electrolytes into balance, as they have suggested. Do you feel like you're getting that under control?
- Are you on *any* medications (including over-the-counter)? Many medications have to have doses adjusted when the kidneys aren't working well - so you could be overdosed on one or more meds.
- Are you on any medications that can damage the kidneys? Even common over-the-counter drugs like NSAIDs can do this, and you should avoid them if at all possible.
Hi Scott, Thanks for replying. I was always under the impression if you had Crohns that you could not have a J pouch but I notice that some people seem to have both.
I do find with my J pouch that sometimes before I can have a BM , I have to wipe my butt first. Then sometimes the feces just leaks out without my realizing it.
My GP will not let me take NSAIDS because of the kidney disease. I try to take very little drugs as I seem to be so sensitive to them all. I take Omeprazole, Lomotil (for J pouch leaks), Felodipine 5 mg (can't handle 10mg), and kidney specialist just told me to stop taking my diuretic, Triam HCTZ as my sodium is so low.
I have always been very aware of the need to keep my electrolytes and since I had my J pouch put in, I have taken Gatorade, Bronson Vitamin C crystals with potassium, sodium and magnesium with my Metamucil.
Maybe another reason for my weakness and exhaustion which recently surfaced: Kidney specialist picked up on an irregular heartbeat. It was first found when I was in ER a while ago but apparently it is not all the time. Kidney Dr. suggested I ask my Gp to order a monitor for me and we are waiting for insurance approval of the monitor.
It is so hard to find out what is causing this weakness and exhaustion. It has basically stopped my life. I can hardly pull myself around and have to force myself to get things done. I am a recent widow and have two poodles, so I would like to find out what is wrong so that I can "get back into life". Been getting worse since this started in Feb. Thanks do the reply. Mary Loar J pouch done in 1984.
Mary, your wekness and fatigue is probably from the low sodium. Here's a list of what low sodium can do:
- Nausea and vomiting.
- Loss of energy and fatigue.
- Restlessness and irritability.
- Muscle weakness, spasms or cramps.
Some surgeons won't create a J-pouch for someone with Crohn's, and the pouch failure rate is definitely higher. Sometimes the diagnosis is uncertain, and sometimes Crohn's develops after the pouch is created.
Thanks Scott,, I have the nausea, headache, loss of energy, restlessness, muscle weakness. Unfortunately now I do know which of my problems is causing me to be so weak and exhausted. I have a cough that my RN friend said sounds like medicine related. Went off Triam HCTZ this AM. Have been on Omeprazole for a long, long time, so wondering if that is causing me problems. I have a lot of problems with reactions to meds. When I had my colon removed and J pouch, for a whole year after I had Parkinson's Disease symptoms. Kept having to go to emergency room. Really, really bad one day, so husband took me to another ER. A nurse looked at me and said "Are you on Compazine?". Four hours of Benadryl by IV and I was fine. Had Compazine poisoning and I hardly took any of it. Interesting about Crohns and J pouch.
Kidneys produced 12 stones in first 6 months after getting pouch! Been 3&1/2 yrs now with no new stones! But kidneys not functioning very well. All blood stats worse! Even drinking gallon of water daily showed extreme dehydration! Increased water to 2 gallons daily and all stats came back to normal! Kidney doc told me I can add Crystal Light to water. Makes it so much easier to drink over 250 ounces daily.
I am so sorry Mary,
My uncle had one of the 1st j pouches, due to FAP, done at the Mayo back in the 80's. In the late 90's was diagnosed with kidney disease and by 2000 was down to 30% function.
They gave him 6 months.
He burried 3 nephrologists...litterally...he passed at age 86 last year from diabetes related infection...over 16yrs after the diagnosis. His kidneys were still going strong.
I was constantly after him to drink more fluids and water...he would drink highly diluted juices, particularly cranberry juice. He had a very limited diet due to both disease but kept his energy up with soups.
Before every meal he ate a homemade soup...threw everything in the bottom drawer of the fridge into a pot, added water and let boil...made some very interesting creations...would add a bouillion cube for salt and extra flavor...
Not sure if this could help you but it is worth a try...if you are allowed to then add a lot of fresh herbs (parsley, cilantro, chives...), they give you a lot of trace minerals that we lose (or do not hold on to) due to our pouches.
I use veggies like zucchini, potatoes (potassium), tomatoes (potassium), onions and garlic as well as leeks and herbs.
I use meat bones or chicken bones to give it more flavour...I know that it might sound stupid but it gives the body both hydration and vitamins...
Just a thought.