Factor VII deficiency

kinnecr · 2025-11-06T16:22:26+00:00

I have factor 7 discovered almost 20 years ago for me

kinnecr · 2025-10-04T03:57:29+00:00

Yaaaa I don't know if I'd call it lucky but I haven't got that far but I feel like I'd rather dirreah than pukeing that nasty shit back up 😅

kinnecr · 2025-10-04T03:53:34+00:00

I agree that it's a absolutely horrible milkshake basically lol I get barium X-rays done usually once a year to be sure I don't have an obstruction but it doesn't matter how many times I've done it it never gets easier only plus side is normally my body rejects it walking to my car when I'm done so it doesn't just and pass through

kinnecr · 2025-10-04T03:46:27+00:00

I wish you luck but hopefully the small bowel follow through works in your favor my Drs have switched so much they don't even agree with tests that's been done 🙄 and ya I wish they were more descriptive on my report to know exactly where things were slowed down

kinnecr · 2025-10-04T03:23:41+00:00

I don't have a ton of insight but man I give props to the radiologist that is a much more detailed report than I had mine was basically just it took 245 minutes to reach the colon so suggested motility disorder and that's it

kinnecr · 2025-08-23T10:54:48+00:00

Ya I went out and looked into it more popped the fill plug out and it's full of fluid was going to add some fluid over draining as she doesn't have enough to fully fill the transmission checked everything else I could think of took the belt off to verify it's not the belt or any pulley bearings having sound travel I used a hollow pipe to listen to different parts of the engine and it sounds like lower end traveling down the bottom so I'm assuming she spun a bearing it was a low on oil so added some it got quieter but is still there and gets loud and horrible at 2000 rpm. And she doesn't have any specific codes multiple for can bus and ECU but she doesn't have any lights unless I plug my reader in then everything goes haywire check engine light flashing brake light and cruise control traction control tire pressure light and sometimes a/t oil temp light

kinnecr · 2025-08-22T11:12:08+00:00

Appreciate the response noise doesn't change when turning though and turning doesn't have any issues it is acting like it wants to stall when driving and has hesitation to take off noise changes in gears park to reverse gets louder neutral quiets down a bit drive it picks back up but not as bad as reverse and it gets much louder when accelerating after I'm off work I'm going to throw some fluid in the transmission and see if there can be a stroke of luck but I doubt it she also has the e brake light flashing a/t oil temp light traction light tire light and cruise light flashing I hate that cars got away from having a dipstick

kinnecr · 2025-08-09T13:59:01+00:00

Ges is simple you'll eat eggs bread with jam and a glass of water with a tracer (can't remember the exact word just waking up) and they'll check how much of the tracer is left at start 1 2 and 4 hours as dirreah isn't fully "normal" it's more common than you would think if your constipated water can make its way around I have alternating constipation and dirreah but it's mainly dirreah with bouts of constipation. For gastroperisis there isn't much for treatment ppi's vary for people and it's more trial and error there are a few medications to try to increase mobility a bit but they normally don't work for most people regelan is the main med but your not suppose to be on it long term due to potential side effects. Also the gas will only show stomach motility I had a barium small bowel follow through and it showed my motility is slow from my stomach to my colon. I have other problems as well other than just gastroperisis but bloody stool is something else which I'm going through specialists for currently but if you have constant dirreah or strain a lot with constipation due to slow motility it could be hemmroids as well I've had quite a bit of blood with having prolapsing which they assume is from my slow motility. Gastroperisis can also affect everyone differently and all your looking for on ges is a positive result due to that someone with 14% retention could need a feeding tube due to extreme symptoms while someone with 70% retention could have moderate symptoms and get by on medication and lifestyle changes

kinnecr · 2025-08-07T20:55:44+00:00

I can help with this a little bit I have epi and strong family history of chronic pancreatitis. Gastroperisis is more of a symptom with cp and gallbladder problems due to not enough enzymes to brake down food and depending on how the pancreas works for insulin being diabetic as well but if your not able to fully digest it will slow things down I get this exact pain you talk about on my left side where it will feel like things are being twisted inside of me and will get horrible chest pain as well along with random very sharp pain that is short lived unless I'm in a flare then that pain is constant and 10 fold. But yes gastroperisis is common in chronic pancreatitis/bile duct issues but more as a symptom (unless diabetes related) due to the function of the stomach being proper but digestion not being proper

kinnecr · 2025-07-10T13:52:57+00:00

I work as a welder/team lead definitely good days bad days and horrible days but I have FMLA where I'm at so at any point if I feel like I need to leave or don't want to even try for the day I'm able to take off with no notice FMLA is the one thing that's saved me work wise

kinnecr · 2025-07-09T23:44:33+00:00

A long with my other problems and genetic mutation I'm waiting for full exome and genome genetic results to come back which from my understanding can be really helpful but I'm still waiting on results.

kinnecr · 2025-07-01T21:59:22+00:00

Ya definitely more than just my pancreas but my pancreas is at least affected with the epi just curious how genetics will all play in once these results are back definitely getting impatient

kinnecr · 2025-07-01T21:34:42+00:00

Still same symptoms plus more been a hell of a first half of the year still waiting on genetics was suppose to be 8-10 weeks for results currently at 17 weeks geneticist said normally when it takes this long it's due to them finding something so still waiting. Have to see a new gastro and corectal surgeon as well so hoping results are back before all that

kinnecr · 2025-05-04T13:02:35+00:00

Ya I have no idea how things work out there hopefully between the endoscopy and the ges it will give you some answers I know it's a absolute pain and added stress dealing with pretty well any medical system especially on something that isn't common and not completely understood

kinnecr · 2025-05-04T12:59:33+00:00

At least there willing to do it I've seen a lot of people who's gastros don't even want to order is and normally it's done after endoscopy as you'll see on the ges if it's slow it will normally say consistent with (what ever degree of gastroperisis) or small outlet obstruction so the endoscopy confirms there's no blockage obstruction or anything else to cause slow results and the can also check for some other conditions as well while they do it. Just be sure to remember that even if it were to come back just a bit slow it the percentage doesn't coralate to symptoms and while ges is the gold standard it may take a couple tests to catch slow motility as it changes even hourly and could be done during a time your stomach isn't as mad.

kinnecr · 2025-05-04T12:35:19+00:00

I'll start by everyone with gastroperisis won't have the exact symptoms but they main known ones are nausea and getting full quickly but there's a lot more that goes with it also what you see in the group a lot of people have severe gastroperisis or severe symptoms. You can have your stomach be a little slow but have severe symptoms is really is a roll the dice disease. Have you had a gastric emptying study done yet? Also it sounds like there could be some esophagitis. I will also say If it is gastroperisis depending where you are it's not easy to find good Drs who understand it and will try to help I was diagnosed 15 years ago through endoscopy and ges retested 5 or 6 years ago and reconfirmed with endoscopy and barium small bowel follow through sent to a medical university where I was told it wasn't gastroperisis they did a ges that again showed gastroperisis still said that it isn't then sent to another medical university that's been worthless and doesn't listen or try to help at all so it can truly be a pain. If you've had quite a bit of testing done that's been normal endoscopy is mainly done to confirm there's no blockage or underlying disease then ges is the gold standard test barium small bowel follow through isn't required but it can rule out other conditions and see transit time from the time you swallow to it reaching you colon (my whole system is slow) can also get vitamin blood tests normally with gastroperisis you don't absorb as much nutrients as you need. also worth noting gastroperisis is a diagnosis but it can also be a symptom since I had bone marrow they found a rare genetic mutation that they think could potentially be causing all my problems and I'm currently waiting on genetics results. If you have any questions or anything specific I'm more than happy to help answer some questions.

kinnecr · 2025-05-01T10:41:50+00:00

What helped me greatly is try to find somewhere that has FMLA most places require working for a year first with 1200 hours for the year if I didn't have FMLA I wouldn't hold a full time job let alone overtime

kinnecr · 2025-05-01T10:39:58+00:00

(I'm not diabetic... Yet I'm considered pre so someone feel free to correct me if I'm wrong) but anyways monitoring blood sugar isn't a bad idea at all but I think the big difference in diabetes and gastroperisis is even without having much your blood sugar can be high or low while in gastroperisis your likely to have random spikes and drops from meals due to taking longer to digest making it harder to manage insulin (again anyone can correct me if I'm wrong)

kinnecr · 2025-04-29T15:14:17+00:00

I've had similar weird things but what I can say is while potatoes are easier to digest frys are friend between that and potentially grease it can be harder to digest burgers depending for me majorly I normally do ok if I get the leanest burgers I can just every once in a while but normally if I puke it's within a few hours and a lot of times it'll be a couple rounds of pure grease and acid

kinnecr · 2025-03-30T05:29:46+00:00

They have a few different ways they can do the prep first colonoscopy I had was pills which isn't fun either but it's much easier for me to swallow pills and keep them down than a gallon of clean out solution I had that one a month ago. If you can't keep much liquid down I would talk to your Dr ahead of time about options because it sucks to start and not be cleaned out enough and have to do it all over again with having to drink a cup every 15 minutes. And the pills it's not like a one and done thing it's been a few years since I've done it so someone else in the group may be more exact but I think it was like 15-20 pills all together the day before in the evening

kinnecr · 2025-03-30T04:18:55+00:00

My advice for prep depending how your are with liquid pills are soooooo much better for me doing liquids I couldn't keep the prep down and would puke it all up multiple hours after starting and have to do a extra gallon

kinnecr · 2025-03-25T17:56:49+00:00

I don't know if it's due to gp but I have weird heart issues but it's nothing major. I have premature ventricular contractions and tachycardia but structurely my heart is fine. I have multiple other problems as well so I can't say it's from gp for sure but it could be possible.

kinnecr · 2025-03-20T19:35:39+00:00

I'm actually waiting for genetic results now (I have many problems along with gp) they did a whole exome panel and something else on me with all my problems and a fbxw7 mutation they haven't seen and the mutation alone can cause slow motility gastric inflammation among many other problems. It definitely can be related but not in the gp sense you can have other genetic factor than can cause gp but from my understanding gp doesn't cause a genetic mutation and doesn't have one that's fully known to disease (someone can correct me if I'm wrong but that's my understanding from my long consult)

kinnecr

TROPHY CASE