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Still having issues 3 years post jpouch surgery

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Posted 8/10/2018 5:40 PM (GMT 0)
It’s been three years (April 2015) since my takedown and I still have so many issues. Bloating, gas/waste gets “trapped” above my ostomy site (scar tissue I assume), weakness, dizziness, faint feeling, low bp, nausea, headaches, irritability. Kidney infections from surgical error. I don’t know what else. I figured I’d be well by now but I’m not even close to being back to myself. Better than I was, of course. But with the depression and anxiety on top of all of my other symptoms, I’m worthless most of the time. (Luckily I was approved for my social security last year but I’d much rather be working.) I used to get weeks where I felt great and woke up with energy and I had so much hope and relief that I was finally seeing the light at the end of the tunnel, but now I rarely even get a good day. If I’d gone back to work when I was feeling better I’d be screwed because I’d end up having to quit or lose my job. Because there’s no way I could hold down a job right now. Does anyone go through this? Is it normal? Does it get better?
Posted 8/10/2018 6:56 PM (GMT 0)
Hi Kentuckygal, so sorry you're struggling so much. I hope you're talking to someone about your depression and anxiety because ugh, I get it, this chronic disease stuff is wearing and taxing on your psyche. I don't have a j-pouch, so I can't speak to that experience but I also hope you are seeking medical help for your issues, you shouldn't have to suffer. If you have spoken to doctors over your issues, hope they took you seriously. I know how dismissive busy doctors can be but this is affecting your quality of life, that's what I would convey if this were me. I hope things improve for you, check in again, people here are pretty good with advice..
Posted 8/11/2018 9:52 AM (GMT 0)
I'm sorry to hear that you are struggling so much. I have only had my j-pouch since March of this year so it's pretty new, but I can't say that I relate to any of the issues you are describing.

Have you talked to a GI or surgeon about the symptoms you are having? It doesn't really sound like it's related to the j-pouch itself.
Posted 8/11/2018 8:15 PM (GMT 0)
I am really sorry to hear that things are rough. Have you been back to the surgeon to discuss the problems you're having? Scar tissue is a big problem for a lot of people. I feel like I've been lucky, but you never know how your body will react. Do you drink enough fluids? Low bp, headaches, weakness and dizziness can be signs of dehydration. How about vitamin levels? Are you taking anything vitamins or having your blood checked? You should get some basic bloodwork, but always chew food well, stay hydrated, and go see the a surgeon to see what the options are. Maybe you can take something for the nausea, or maybe there's something for the gas, perhaps there is something going on that you can see and treat. You should talk to someone if you're depressed and anxious too. Having to give up your job and independence is shocking, but you will get back on your feet. Think positive. Life is a series of ups and downs. It will be up again smile
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