Okay so I've had my pouch for 16yrs and was diagnosed with colitis 20 plus yrs ago. I've never been a overly thirsty person. Plus I never really had to pee before. I would just poop ALOT. Always though my lack of urination was because of that. I would say the last month, I have been more thirsty than ever. The last 2 weeks though, my thirst has been uncontrollable. I'm literally sleep walking into the kitchen and drinking everything in the fridge. My fiance said when he got up this morning there were 5 empty jugs on the counter. Including all the water that was left in a 5gal jug. Also when I have to pee I have to go right now. There is absolutely no holding it. I work ALOT mostly 12hr days and I have pissed my pants 3 times in 2 weeks because I'm on the complete opposite side of the building when it hits me. I get a ton of obstructions and have had multiple adhesion surgeries. I know for sure when I have a possible obstruction. But this is completely foreign to me. Has anyone experienced this?? If so what was it?? I haven't gone to the dr yet. Because sometimes we just dont want more bad news. But I'm definitely getting a little worried. I've also lost more weight, very fatigued, blurry vision, very pale.
I wonder if it could be some absorption issue, but after 16 years with a JPouch, you would probably recognize that. Could you have a bladder infection? The urgency you described could be a symptom of a bladder issue/infection. This is a long shot, but you may want to get your sugar checked, when I developed diabetes - I drank tons of water and needed to urinate often. I of course don’t want to scare you. I got diabetes totally unrelated to my Crohn’s, but rather steroid use and weight gain and age. By no means do I have any authority to evaluate that, but you may want to go to your GI doctor or primary care doctor soon. Good luck - Doug
Thanks for the advice. I've been thinking that diabetes sounds the most like what's going in. When I was in the hospital before they kept wanting to give me insulin but I wasn't eating at all. So I wanted to wait till I was eating and then get it checked again. I definitely need to go in. Hopefully in the next few weeks. I'll be able to get in.
Hi - that sounds like a plan. Also, in NYC we have these medical walk-in clinics called City MD. They can check you sugar in a few minutes with a little prick on the finger. They take all sorts of insurance.
If you’re going to wait a few weeks to get this checked out then you probably should manage your carbohydrate intake pretty carefully in the meantime.
Please do not wait to get your blood sugar checked. Uncontrolled blood sugars can lead to an incredible number of health complications some of which can be life threatening. You need to have it checked TODAY. Go NOW. Do not stop, collect $200 or any other such thing. This needs to be addressed immediately
Jaypea, I get that I should go right away. But I have 2 issues with it. Unfortunately I have one of those jobs where I'm the only one that holds keys and I have over 100 associates relying on me to be here. Yes, I do them no good if I'm in the hospital for a prolonged amount of time. Which has happened before. And 2 when I go in and it's nothing I get treated so horribly by medical staff its intolerable, I end up so stressed out that I'm worse than I was in the first place. I generally only go to the hospital when I know I have a full obstruction (last time I had 5 by the time I went). Walk in clinics. Every experience I have had they just shrug there shoulders and say I'm way beyond what they can do at a walk in. It's pretty appalling. There is one ER Dr in a neighboring town that actually listens to me. But he only works overnight. I also dont have a GI. Mine retired and I've never been able to replace him. My GP also doesn't know what to do with me. I know I'm full of excuses. I'm sure everyone on here understands the frustrations of being treated poorly by Drs. Sometimes it's just to much to deal with though.
Hi - I hear your frustration - it’s tough to be a patient. I am sorry that you get treated like that. Call you GP, ask for him to send in a script to any local lab - here in NYC it is Quest Diagnostics. They are open late. Ask the doc to write for a complete blood panel, with kidney functions (to check dehydration), and run an A1C (which measures sugar levels over a 3 month period). Have this data with you for when you get a meeting with surgeon. Good luck - Doug
Sonja, your GP may not be very helpful for obstructions or pouch issues, but he/she should be able to order a simple fasting blood sugar. If you really haven’t peed in years this could also be evolving kidney disease, again something your GP could get started evaluating. Neither of these things would involve a surgeon.
Sonja, when I was diagnosed with diabetes, I had no symptoms. I could have gone years with uncontrolled, undiagnosed diabetes. A simple blood workup revealed the disease. Your extreme thirst, blurry vision and fatigue is telling you something.
Diabetes is serious, especially if undiagnosed and uncontrolled. It can affect the proper functioning of your kidneys, liver, pancreas, eyesight (I know someone who completely lost her sight because she did not manage her diabetes), your nerves, your ability to heal after a simple cut or injury. Go to your doctor. Isn't it better to know so that you can learn to manage it? Do not be afraid of how the medical people might treat you. Don't let someone's attitude impede your right to health services and their duty of care. Put your health above them, and certainly far above the 100 co-workers you are keyholder for.
Thank you everyone for your advice. I had a chance to talk to my manager and get a few days off to take care of myself. Although district HRs response was "is she thinking about her career" unbelievable!!!! I always think about my career first, which is part of my problem. Anyways.
Winterberry, Although all the concerns you bring up are worrisome. Blindness has always been a big one for me. Thanks for the reminder that that's a possibility.
Yea sounds like it could be an issue like diabetes. My exhusband had diabetes since a child. It’s scary but something you need to address soon. Don’t worry what HR thinks. That is just their problem if they respond that way.
Let us know how it goes.
Well spent the whole morning/afternoon in the ER after almost passing out first thing in the morning. Turns out I do have diabetes. My levels were close to 400. After a shot of insulin, it dropped closer to 200. Waiting on my prescription and I have a appointment tomorrow with a specialist.
It's good to have an answer so that you can learn to live properly with this disease, and to manage and control it so it doesn't cause damage to your organs, or cause sudden heart attack or stroke. Your new specialist or a diabetes educator will teach you what to eat, what to avoid (sugar), how to measure portions, and how to count carbs. It isn't difficult at all once you get the hang of it and it will very quickly become second nature. You'll be able to "eyeball" a food or beverage and know its calorie and carb content, and how much of it you can reasonably have. The best thing about a diabetes "diet" is that it is very good for j pouchers: low carb, high fiber (choose soluble fiber), and lean proteins. You'll learn to use a small blood monitor too, so you can check and manage your sugar levels every day. Good luck.
Thank you everyone for your support. You all have given me more support and guidance than I have ever gotten from drs. And even my friends and family, because you all are in the same boat. I will always appreciate that.
Glad u got a diagnosis before something extreme like a sugar coma or seizure happened! Good luck learning how to deal with the disease. It’ll take time but it’ll all work out. Best!