Just so tired!

Oh no!  What do the doctors say about this?  What have you tried?

Hi, I'm sorry to hear that things are going so badly. I have my bad days but what you are describing is worse. I hate to ask if your Drs have suggested going back to a bag to see if that is any better? How were you during that part of jpouch creation?

This may sound dumb but I can't stop eating and it makes me feel terrible (gas, bloating etc). If I don't eat I loose weight and feel more tired and painful. I don't want to eat and when I don't I actually feel good for awhile. I have similar concerns about how I will feel when 60. We are both very close in UC diagnosis and jpouch creation. My doctors tell me to keep going, my metabolism is my biggest problem, hopefully it will slow down and I will gain weight.

I hope you feel better soon and hopefully some of this is helpful. Good luck!

Hi, Scatty (and Pouchlogic)

Ask your doctor to do a complete blood workup and also check for vitamin b’s deficiencies. If you are not eating enough vitamin b foods (protein based foods such as meat, fish, poultry, pork, rather than plant based foods, contain the b’s)  a deficiency can affect so many system functions from sleep to how your body breaks down fat and carbohydrates, and carbs are vital for brain health and the way your body functions every day, and nerve health. For a long time I did not know I was on the verge of type II diabetes and had a wonky thyroid. I ate all the wrong things for diabetes, too many carbs, low protein, not nearly enough greens, or water. I just thought I was weak and tired and feeling low from a crazy job and getting a full 37 minutes of sleep per night. Turns out I had diabetes that made my entire system behave poorly and nerves on edge 100% of the time. Diabetes and thyroid issues can also make your appetite skyrocket, and you eat like there’s no tomorrow but don’t gain weight because your blood glucose (sugar) is off balance, or have hyper-thyroid (an over active thyroid).

I was diagnosed diabetic with hyperthyroid AND had cancer within 6 months of each. Now I have an endocrinologist following my health with bloodwork every three months, I take oral meds for diabetes — I’m not insulin dependent — and I am much, much better now with a well behaved six year J pouch. I don’t take a multivitamin because I eat a balanced diet (except for the recent 3 month blip where I was malnourished due to emergency surgery for adhesions). The only non meds I have been taking for the past six years are vitamin D (taken with calcium foods and some fat) and B12’s both always in the morning. I just started taking biotin, hopefully on a temporary basis. Nothing else. But you need to investigate and find out with your doctor what is off balance. Costco has a good range of vitamins and supplements if that is your answer. I hope it is a simple fix for you, but see your doctor first before you take anything, even simple vitamins or supplements. Good luck.

Hey mate try the best hangover cure on youtube.I use a magic bullet blender and add a small banana,baby spinach leaves and phsyllium husk with electrolyte drink.Ive had the best bms and sleep ever.

Thank you for the kind words and advise.

I have had my blood work done and my vitamin b's came back fine. I take chewable vitamins every day. I can't eat salad as it bloats me and causes pain, I can manage a salad sandwich as I think the bread helps with the digestion. I can't eat nuts, seeds, dried fruit or an excess of fruit. Even peanut butter affects me if I have it more than once a week. I am lactose intolerant so I have switched to oat milk (I miss cheese!)

An example is this weekend I have been taking my iron (liquid form sytron 5ml) twice a day with immodium (2mg tablets) I got in to the double figures with bathroom visits and ended up having a very bile-ie weekend. Which resulted in butt burn and cramps. I managed to sleep through on Saturday by taking paracetamol, immodium and doubled my Amitriptyline. I am cautious about increasing my Amitriptyline so I only double my dose (10mg to 20mg) when I really need to.

I have thought about going back to the bag but passing stools have become easier and the pain is when things are passing through my bowels. It is like I have pulled all the muscles in my core. A hot water bottle and gental massage does help but when it happen every other day and gets in the way of doing things it because very annoying.

I have an appointment my with gastro doctor this month and I'll ask them for more advise. I feel a lot better this morning just being able to talk to people who understand. I am a lot better from when I had UC, my life has improved a lot with surgery but its just grinds you down some days and you need to vent to get it all out.

Thank you for your replies they mean a lot xx

@PouchLogic posted:

Hi, I'm sorry to hear that things are going so badly. I have my bad days but what you are describing is worse. I hate to ask if your Drs have suggested going back to a bag to see if that is any better? How were you during that part of jpouch creation?

This may sound dumb but I can't stop eating and it makes me feel terrible (gas, bloating etc). If I don't eat I loose weight and feel more tired and painful. I don't want to eat and when I don't I actually feel good for awhile. I have similar concerns about how I will feel when 60. We are both very close in UC diagnosis and jpouch creation. My doctors tell me to keep going, my metabolism is my biggest problem, hopefully it will slow down and I will gain weight.

I hope you feel better soon and hopefully some of this is helpful. Good luck!

Hi Pouchlogic,

I am saving going back to the bag as last resort. But I feel you about the bloating and gas. It is the worse part of it. I have maintained my weight but I have a terrible diet. A normal person would of put on a lot of weight by now if they tried to match my eating habit.

I will try doing a diet for a week and see what happens to to my weight, curiousto see what will happen. I know when I was in hospital I didn't eat for a week and lost a stone scary quick. I also couldn't keep weight on with the second half of my surgery. Between the creation of the pouch and the reversal, went down to 8st (50kg). The thing that helped me put weight on was working at home when covid happened. I fluctuate between 9st 7lb and 10st.

Oh it isn't a long term fix but I switch to chips (fries if you are in US 😊) for a day to give my gut a rest.

I am also saving going back to a bag as my last resort. The best explanation I got was with the bag there is actually less pressure in your gut and it is much easier to burp the bag then go to the toilet.

I need about 1000cals per meal if not more. If I have a light day eating I loose weight even if I sit on the couch all day. If I actually work physical I can loose 10lbs a day.

I have also had all the blood work etc. I had problems gaining weight before UC let alone after the surgery.

Glad to hear that you have better days.

I have considered seeing an allergist to see if there are any additional foods that I have an inflammatory response to.  When I quit dairy and wheat gluten, I felt so much better.  I also wonder if the tiredness could be electrolyte related?  Do you supplement with electrolytes?

@PouchLogic posted:

I am also saving going back to a bag as my last resort. The best explanation I got was with the bag there is actually less pressure in your gut and it is much easier to burp the bag then go to the toilet.

I need about 1000cals per meal if not more. If I have a light day eating I loose weight even if I sit on the couch all day. If I actually work physical I can loose 10lbs a day.

I have also had all the blood work etc. I had problems gaining weight before UC let alone after the surgery.

Glad to hear that you have better days.

Wow that is quite the weight loss. I burped my bag once when I had it. Never again. It was like releasing death from a bag 😊

@Sara Marie posted:

I have considered seeing an allergist to see if there are any additional foods that I have an inflammatory response to.  When I quit dairy and wheat gluten, I felt so much better.  I also wonder if the tiredness could be electrolyte related?  Do you supplement with electrolytes?

I have thought about going and seeing one but I am scared about more restrictions. My list of safe food to eat is getting short and I don't want to resort to blending everything.

I use to eat like a garbage bin. Never the fussy one, I would eat anything. Now I am required to be fussy and it is difficult to accept.

I hear that.  My food restrictions make social eating difficult.