I read with interest your valuable conversation regarding" SHORT BOWEL SYNDROME. As of 2016, 6/9, I became a woman with an ileostomy. Why? Due to a small procedure to help my small intestine that crushed from a total colectomy ie. Removing large intestine including rectum, then several months a j-pouch. It seems impossible to comprehend that first surgery was 2004. So I dodged the bag." Now, back to SBSand 2016, this latest hospital that said, easy two stitches to place 2 pig tail stents.... they perforated my bowel. The story on that is a bit too much as to what did happen . The outcome I survived incredible odds, but , the bag is now with me permanently. So, that'swhere the SBS comes in. I couldn't retain nutrition due to high output. I'm from Long Island and when I was diagnosed initially with F A.P., something like C.RP.E, GARDNERS SYNDROME.(. I'm an over achiever) I went a few months have endured Sepsis and just horrible things I didn't think I would survive.
I'm dealing with a central peripheral pic line in my chest wall. Think port for chemo. I had that taken out and have had 8 picclines in 2 years.P.I.A.! The reasonfor this is to hook up to hydration between 8 some weeks 12 hours of hydration x 7 days per week. Labs every two to three weeks. D10 bags definitely 8 hours that has electrolytes with it, then additional bags are D5 bags. My food, fluid, and pills ended up in ,THE BAG. I was in the hospital more than home. The hospital finally decided this nurse changing the hydration dressing in home once a week, supplies delivered every Wednesday for the week. My lab work shows my creatine is too high, my pottasium too high,my bun too high ect . So I'm interested they give me hydration and I'm on an opioid that I change the patch every third day. I have a break through medicine for me which is new, since, December this year. I don't claim to understand all of what your discussing but I' d like to. Right now i feel like a leftover, by the time i put aquaguard on 3 different parts of my body. Oh, yes, my bag only lasts 25 to 26 hours. They caused 3 surgical hernias that are not an option to fix. I'm inoperable as i have a inoperable soft tissue sarcoma entwined interadominally. That's from the Gardners syndrome. I'm not complaining just giving all the facts or what i can fit in here without you falling asleep from all this shitI can't even say the words salt or sodium without gagging. I am tired of the chest wall being manipulated for hydration. If there is another way , why in earth didn't doctors set me up with whatever it is you are using. I was diagnosed with a rare disease causing cancer. It is always under surrvelliance and if they find suspicious they scrape it out of me. Oh yes, my son was 20 when diagnosed, my daughter was 16. They had large intestines removed and some other parts of our bodies I didnt know had. I had no clue I had a birth defect that would hurt my children. I suffered with bowel and belly pain that took my breath away since about 5 years old. This illness wasn't discovered until 10 years prior to my diagnosis. Which I had to research with my picc s becausecthe dr s on long island had no clue what I had. When I came across a picture that matched mine I called John Hopkins hospital that put me in touch with their DNA people. They actually pursued me to get immediate help. I did. But I went to a hospital in N.Y.C , then for the perforated bowel I was at a hospital that claims to be the best in the nation. They are listed as such as well in any magazine, article, or doctor you speak to. So who knew I'd end up near death n no solutions? The person, whoever, he was or is, carried this gene that caused this mess. They say people don't make it usually to 35 with this illness. I was diagnosed at 46. Now, at a young 61, I'm asking about an answer to hydration. Which the doctors tell me this is the gold standard of slowing down the bowel. However, I can put out between 1500 to 2600 per day. Yes, im forced to measure. Not happy about that. It's all just water. Hydration this way is supposedly going into my veins. I did gain 25 pounds. I've always been petite and 100 pounds easy. Ince I had the first surgery, I couldn'tput on weight. I did chemo off and on for several years. However, it reduced the grip on the angry tumor, left me thinner and I have not needed chemo since 2012. Yay! Chemo isn't a cure for this they have no cure. No my children can't have kids. Yes, both my kids are now 32 and 35, active, no bags, and SUCCESSFUL in their careers and marriages. There are no words that can shorten up this mess. However, I simply am grateful to be alive but I'd like to reduce the amount of plastic in my body. Your info on this blog is hope for reducing the hydration bags and picc line and nurse and skin excoriation from the most sensitive dressing they have in the medical market! I can'tkeep my illeostomy bag on longer than 25 hours. I was a vegetarian now to get protein because of potassium being high n SBSI need to avoid vegetables, potatoes, bread, I'm frustrate . I'm a person who dreams of eating a salad or some vegetables. I thought the bag was bad. It is. But I'm grateful given the way I had to live prior, the life i get to live now is the bag. I died getting it but survived with it. Literally died. No exaggeration. So I dream of not feeling so ugly, or being a shitty leftover. I want to at least swim and i cant eith this ouch line. I love the ocean. I want to at least be able to stand at the shore and this picc line makes that part a bit tricky. Also, i always had low pottasiumWhere they had to give me potassium. With the hydration my pottasium until last month was dangerously high. I asked them a natural question, can you remove pottasium from the bags? Yes. The potassium is normal as of last week. So I'll see what it is this week. But please after all this typing tell me in terms I could understand if therevis an alternative to this hydration nonsense( tho I'm thankful) dehydrating all the time wasn't fun and neither was sepsis more than 4 times. They say I look great! I look like I'm 50. Well that's great it isn't because of anything they have done. It's just lif . I can live with all this if I had more choices on two items. Please help me another way to stay hydrated. I was drinking all the fluid I could, but right into the bag. But it's still happening. I'm not on the hospital nearly what I was. But I don't like all this medical stuff hanging around. Plus, the risks I suffer by having the picc line. It requires so much work with putting on pouches, belts, patches, aquaguards ect. Help? Thanks for reading. I hope I didn't scare anyon . I gave just the basics. I'm not a fan of the bags/ pouches. I'm allergic to latex and very sensitive to plastics and all adhesives. There has got to be another way to hydrate naturally. That's my goal. I will accept the pouch but I dream of another way of staying hydrated . This way I'm not permitted to drink much fluid but I'm always carrying water and do sip it slowly. That is permitted. I can't drink alcohol or eat chocalate. Not that I did much of either but take away my veggies. UGH!!
