I read with interest your valuable conversation regarding "SHORT BOWEL SYNDROME." As of June 9, 2016, I became a woman with an ileostomy. Why? Due to a small procedure to help my small intestine that was crushed from a total colectomy, i.e., removing the large intestine including the rectum, then several months later, a J-pouch. It seems impossible to comprehend that the first surgery was in 2004. So I dodged the bag. Now, back to SBS and 2016, this latest hospital said, "Easy, two stitches to place 2 pigtail 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's where 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.R.P.E., GARDNER'S SYNDROME. (I'm an overachiever) 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 PICC line in my chest wall. Think port for chemo. I had that taken out and have had 8 PICC lines in 2 years. P.I.A.! The reason for 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 have 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 at home once a week, supplies delivered every Wednesday for the week. My lab work shows my creatinine is too high, my potassium too high, my BUN too high, etc. So I'm interested, they give me hydration and I'm on an opioid that I change the patch every third day. I have breakthrough medicine for me which is new, since December this year. I don't claim to understand all of what you're 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 an inoperable soft tissue sarcoma entwined intra-abdominally. That's from the Gardner's syndrome. I'm not complaining, just giving all the facts or what I can fit in here without you falling asleep from all this. 😊 I 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 on 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 surveillance and if they find something 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 didn't know we had. I had no clue I had a birth defect that would hurt my children. I suffered from 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 PICCs because the doctors on Long Island had no clue what I had. When I came across a picture that matched mine I called Johns 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 with no solutions? The person, whoever he was or is, carried this gene that caused this mess. They say people don't usually make it 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, I'm 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. Once I had the first surgery, I couldn't put 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't keep my ileostomy bag on longer than 25 hours. I was a vegetarian, now to get protein because of potassium being high and SBS I need to avoid vegetables, potatoes, bread, I'm frustrated. 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 can't with this PICC 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 potassium where they had to give me potassium. With the hydration, my potassium until last month was dangerously high. I asked them a natural question, can you remove potassium 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 there is an alternative to this hydration nonsense (though 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 life. I can live with all this if I had more choices on two items. Please help me find another way to stay hydrated. I was drinking all the fluid I could, but it went right into the bag. But it's still happening. I'm not in the hospital nearly as much as 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, etc. Help? Thanks for reading. I hope I didn't scare anyone. 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 chocolate. Not that I did much of either but take away my veggies. UGH!!
