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Iv had my pouch for 33 yrs this Dec. I don’t really know I have her ( I like to think she is a female) lol. I’m really well although prescribed Mercaptopurine and have inflammation in my joints and prescribed Hyroxychloroquine & sulfazaladine and I see my specialist nurses and have bloods done every 8 weeks but I’m feeling extremely tired. Even after a good sleep I’m still tired. I also have monthly B12 injections.
Just want to know if anyone else is affected ?
I do work from home but I’m starting to think and question is it my age (53) or the age of my pouch I don’t really know.
My spec nurses and Doctor seem to think it’s maybe just me overdoing things but they aren’t really sure.
I would love to hear if anyone is feeling similar to me.

Thank you for taking the time to read this. I appreciate everyone of you and really hope you are all keeping well and safe.

Lots of love always

Linzalisha 💕💕💕💕

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I am always tired as well, not so tired that I want to sleep but no energy to really feel like doing anything I don't need to.

How is your weight and metabolism? I struggle to keep weight on and my metabolism is like a carnival ride turned to full speed with the knob broken off. I have been told to do less by doctors after the jpouch operation. I was this way before the jpouch and I can't expect it to be better with the pouch. I do much better doing less physical activity and trying to get as many calories through the day. Keeping my weight up definitely helps with energy but my weight also drops quickly if I don't keep up with the calories. I'm 37, 7 years with the pouch, 4 with uc.

I hope you find something to help.

Thanks so much. When I’m feeling ok I’m like non stop and like you was the same before my pouch and I still do have some days like that but I’m getting more and more tired and some days struggle so much to get out of bed.
My weight has always been on the low side but Iv recently put on and I think it’s due to being less active and it makes me feel uncomfortable and that horrible bloating which I hate.
I just worry this is how the rest of my life is going to be and poss worse however I’m so grateful I have my pouch which is brilliant so it’s weighing up what I have to be grateful for.

Thanks so much. I really appreciate you replying and wish you all the best.

There are a bunch of possible causes, and it’s worth trying to figure this out. Is it possible that you’re a bit dehydrated? That can creep up on us slowly. Did any of your medications get started “shortly” before the tiredness started (within a few months)? Are you sleeping well? Conditions like sleep apnea can develop without you noticing.

I hope you figure this out!

I unfortunately am in the same boat. I had my pouch done in 2007 and really was never ok... Pouchitis started immediately and for years. Then was diagnosed with Crohn's and had to do dilations at least twice a year as I was getting multiple strictures. Ran the gamut with Remicade, Stelara, Humera, Mercaptopurine, etc....

Got kidney cancer last year and during surgery they punctured my small intestine which shut down my digestive system for 13 days.

Now I have a 10-inch closure going into my pouch and the doctors at the clinic cannot do any more dilations or guided wire procedure to open up. Only option is an ileostomy, but only i think 60% success rate after a failed J-Pouch. I do not want any more surgeries as I seem to get worse every time.

I have always been tired as my daily bowel movements are min 20 upwards to 30. I do not sleep as you know we are always up going to restroom. But since my cancer surgery (which is gone:}) I have had and exhaustion that goes beyond tired. It is more of a malaise/fatigue. I feel lightheaded at times and am almost always nauseous. I own a business and am now in the process of giving it to my son as coming to work is almost impossible. My numbers are not terrible in regard to nutrition. They are worried my kidney are starting to suffer from the constant dehydration and rehydration.

I apologize for the long explanation, just wanted everyone to know we are not alone, and tomorrow is another day. It is amazing what we get used to....

Hope you and your families all stay well

Hi @Linzalisha, hope you are doing well.  I completely understand what you are feeling.  I constantly find myself dragging.  So much to do.  Sometimes I get so cranky because I'm so tired and exhausted. 

Few things and some have suggested them to you.  Depression can be a big factor of low energy and not feeling like doing anything.  Low iron levels so iron infusions. Dehydration was a big one for me.  What i found was Vitamin Water worked best for me. Way better than Gatorade,  that has too much sodium and not enough of a nutrition factor. So definitely give that a try.

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