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Purplepower Purplepower

Life after suffering necrotising enterocolitis (NEC) as a premature baby

Hi,

I am looking to find somebody (anybody) who, as a baby, premature or not had suffered necrotising enterocolitis. I was born 10 weeks premature and had necrotising enterocolitis, I had at least 3/4 of my small intestine removed and have been living with the 'aftermath' ever since. I'm 26 and the side effects of NEC have left me with constant diarrhea, which apparently no doctor can do anything about, or prescribe anything to ease this - anybody know anything about this??

Hopefully I will find somebody else who has gone through the same smile and is living with it...happily!

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  • Cleigh2012 Cleigh2012

    Hi my name is christy Reynolds and I am 32. I had necrotizing Interocolitis as an infant and I had 1/2 of my small intestines removed. I'm glad I finally found someone else! I have a lot of issues with going to the bathroom more than other people and I have trouble keeping weight on. Do you have this problem as well? I recently had a baby, and I gained weight for that it afterwards, I lost it all. Just curious if you have this issue as well. I am so tired of people saying that I'm so lucky to be able to not gain weight, but I never know if what I eat will send me straight to the bathroom! And my addiction to nutella... Anyway, wil be praying about your issue- I totally understand.

    Sincerely,

    Christy from San Antonio, tx

    • annemarie55044 annemarie55044 Denise59370

      Hi Denise my name is Annemarie I've suffer with NEC and was born ten weeks prem I went under lot of ops to remove small intestines and some large I am now 28 I have two beautiful girls but now am suffering from IBS and now overgrowth in baterica sibo but am currently undergoing investigation as from having my second daughter I've been fighting with siob I Carrie red normal had normal develiver s hope this give u hope xxx

  • Purplepower Purplepower

    Hi Christy, it is lovely to find somebody with the same problems as me, I was beginning to think I was on my own! I lost almost all of my small intestine, so, like you I also really struggle to gain weight and to keep it on. However, I requested to go to a dietitian, and have since been having some luck with gaining weight using drinks called Enshake (it's a drink like a milkshake)

    It is not so much the going to bathroom more than other people, as I am not sure I do really, it is the kind of 'bathroom' movements I have to cope with that is more embarrassing that anything else. Do you find this?

    I am glad to hear that you have a had a baby, congratulations smile I was worried that because of where my scar is it would not be possible.

    Thankfully I am not a fan of nutella :p but I do love curries!

    I was also prescribed Codine Phosphate as a remedy to the toilet issue - maybe this is something you could inquire about? I am not sure how good, or safe etc it is, but it may be an option smile

    Thank you for replying to my post, take care and look after yourself smile

    Hopefully hear from you again soon.

  • bonez1989 bonez1989

    i was born 13 weeks prem and developed NEC, i had a serious case where it affect both small and large intestines aswell as the valve that conects the two, i am now 24 and still suffering the side affects i was diganosed not long after surgery with Short Bowel Syndrome..

    After reading your stories i have a become over whelmed that i am not alone and the only one having to go through this..

    I live in Australia where this condition is rare and not many understand it, let alone the diet i have to stick to

    i am on a low protien no sugar and no fibre diet and i cant take any medications to help me through any problems.

    i am Hoping that i can meet or even talk to people with similar condition or same condition as i have.

    • Purplepower Purplepower bonez1989

      Hi Bonez1989,

      Nice to 'meet' you smile

      That sounds awful, as I stated previously I only had about 3/4 of my intestine removed, but do suffer a lot of side effects due to this. I can only imagine what it must be like to also have to stick to a strict diet - admittidely I am also supposed to stick to some form of diet, but it is so difficult as I also loose weight very easily!

      Have you seen any specialists at all? The only medications I have been told to take are anti diarrhea pills, but they don't always work, and sometimes cause more problems!

      It would be lovely to meet more people with the same problems, I know one lady with the same issue, but it does not appear as harsh.

      Hope you are well, other than the obvious smile x

    • sam70248 sam70248 Purplepower

      Hi 1purplepower

      Nice to meet you smile

      Firstly i would like to say thank you replying to me... it means so much to finally meet someone that has same condition as me... honestly u are the frist person i have spoken to that has dealt with this condition from birth...

      I do see gastroenterology doctors as this year alone my condition has gotten worse.. i was taking anti dirrorah medication but agree with it doesnt work that well... i also have to have regular B12 shots and extra salt as i have a definacy in both... wieght has always been a problem as well ( only perk to being tiny is cheaper clothes lol )  the only thing that i have noticed that does help to retain some wieght is a ensure supplement drink and having 6 to 8 small meals a day..

      Like i said before u are the forst person i have meet with this condition but i would love to meet many more just so we can share our stories and help other people or parents with child that are born woth this comdition... ( as it is rare and generally unheard of )

      If u would like to contact me thru email u r more that welcome to

      Hope u are doing good and everything is as well as ot can be smile x

      Emis Moderator comment: I have removed the email address as we do not publish these. Posting your email address on an open forum can result in spammers getting it. If it is still required by other users please use the Private Message service to exchange these details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages ;

    • Purplepower Purplepower sam70248

      Hiya smile 

      Good to hear from you again!

      Just a quick reply as I'm at work (hehe naughty) 

      I am doing well, or as you say, as well as possible. 

      I have given up on pills, they either don't help or cause other problems. 

      I have recently been in touch with a lady who had her colon removed and she too suffers really badly. 

      I used to have those drinks, they worked well but thankfully I am able to keep my weight ok as long as I never skip a meal!! 

      I hope you are well and keep in touch smile 

    • sam70248 sam70248 Purplepower

      Hiya 

      I am doing well some what, just trying to improve each day

      ( one day it ends up improving some what lol )

      For some reason I can't eat much now cause I am always full.. And I find my self thirsty more than I should b..

      I don't take ensure anymore as it did help in the beginning but doesn't now 

      I have to have regular doctor and Hostipal appointments for now until they find out a weigh of controlling it all as I have gotten worse in the last couple of months it's at the point I can't work ( which I do miss)  and I generally spend most of my time at home.

      Hope u r well and I will defiantly keep in touch 

  • steve94397 steve94397 Purplepower

    Hi after reading ur story I felt good to know that not only am I the only one but I thought I wud share mine

    I was born 13 weeks premature and had NEC and had to have 1/2 my bowel removed and the rest of it has tears in it, I'm now 24 years old and am constantly going to the toilet 10 minutes after eating a small meal. Can't seem to get any nutrients from the food which I'm eating and feeling tired and weak all the team as well as not been able to put on weight..I have noticed blood in my bowel movements but doctors can't seem to tell me anything

    And was wondering if u had any advice or does it get worse as u get older 

     Sorry my names Stephen and I reside in Scotland 

    Hope to hear from u and hope ur well

  • angela57257 angela57257 Purplepower

    Hi, thank you for your post, I have a 4 year old son who has suffered in the worst way with NEC, he had 4 operations, was left with 12cm of small intestine, which grew to over 100cms after his 3rd operation, and had most of his valve removed, along with disease of the large intestine also.  He was born at 24 weeks, it took over 6 months of hospitalization before I could bring him home.  I remember the doctor who delivered him telling me "this was just the beginning", and he was so right. 

    My son suffers with loose bowel movements, in the medcal world it is described as a 7 (the loosest kind of stool), he does not have allergies but has intollerances such as sugar, all dairy, and gluten.  As a result I give him cold pressed home made juice every day for maximum nutrition absorbtion, I do this as I was told that fruit and veg will have an effect on his stools due to the fibre, removing the fibre allows for maximum absorbtion, he is a thriving stocky little boy, truly a miracle, I believe that if anyone is having nutrition absorbtion problems take a leaf from our experience and juice the nutrients yourself, forget pills and potions, they never worked for him, he looked pale and sickly, now he is happy, healthy and you would never know hed been ill despite the loose stools he still has.  I hope this is of help

  • nfom16 nfom16 Purplepower

    Hi i have never come across anybody who has children who have had NEC let alone adults who have previously had it.

    My daughter is 3 was born at 28 weeks & had to have 12cms removed, she had a stoma and after a few months it was reversed she recovered and not had problems until now!

    For weeks she has been having really loose stools at first we thought it was down to her ear infection, but it's been almost a month now We thought it was a milk intolerance so removed all dairy with no success. So finding this thread is helpful Thank you.

    Any dietary advice will be really helpful as I've found suggestions on removing protein, fibre , dairy but what would that leave her to eat??

    Please help !! She also has cp so is immobile and just started nursery.

    • zoe781 zoe781 nfom16

      hi ya, my son is now 10, he was born early with the same condition,he has 88% bowel removed plus all his colon was removed as well.the last 10 years he has basically been on the loo!

      He had a mini button fitted at the age of 3 for tube feeding as he was and still doesnt gain any weight. On the 3rd july he is gonna have a hickman line fitted as the hospital are very conserned about his progress 

  • matty098 matty098 Purplepower

    Hey there Purplepower.

    My name is Matt. Im a 30 year old from Vic Australia. I was born 12 weeks prem and developed NEC. I lost half my large and small intestines and have never had a solid stool.

    Its so amazing to find out there are more people out there like myself. I would love to talk more about any issues any of you may have been having.

    I recently had to install a hose to our toilet due to how irritated my bum has been getting due to all the wiping i have to do.

    I have also struggled to put on any weight. With muscle being the only exception.

    So i have spent a lot of time in the gym. I also have noticed the last couple of years i seem to be dehydrated and lethargic a lot of the time.

    Was wondering if anyone else had these issues?

    • Cleigh2012 Cleigh2012 matty098

      Hi- my name is Christy and I had nec back in 1979 when my chances for survival were slim. I struggle to gain weight but since having kids, it has helped. I had a hard time carrying them because I couldn't handle that much weight, but I do struggle with fainting from not eating because I don't take care of myself as I should. I have 1/2 of my small intestines and I go to the bathroom more than most people. I have learned to live with that issue. Do you know if certain foods don't get absorbed for you? I know if I eat steak it goes right through me. What kind of foods do you eat that seem to stay put and get absorbed?

    • sabermantoo sabermantoo Cleigh2012

      Hi Christy:

      When I was very young (I'm a few years older than you), I was constantly going for tests and was told that wheat/gluten and fat did not absorb well. Everyone is different, of course, but you might find that your body can handle leaner meats and rice based starch - like brown rice pasta.

      I hope that helps.

      Best,

      Shari

  • sabermantoo sabermantoo Purplepower

    Hi. 

    My name is Shari. I was born nine weeks early and had necro entero colitis that resulted in having most of my large intestine removed. I am lucky that I don't have a bag.

    Anyway, when I was younger I suffered many of the things listed here - not able to keep weight on, having to drink ensure, etc.

    I'm over 40 now. For better or for worse, weight is not an issue.

    But lately I have had an issue with being dehydrated. And whenever I get sick, i get a heat rash. I understand (from a nurse practitioner) that heat rashes can be caused by heat or from being dehydrated. I've also been getting leg cramps more often than usual (also can be caused by dehydration) and as someone recently posted, I can feel physically lethargic at times when there is no reason to feel that way. Again I think this goes back to the dehydration issue. Also recently I had a mild UTI (never had one in my life) - those too can be cause by...dehyrdation. 

    I'm not sure what to do about it, but I am so glad to find this group. According to my parents (who may be exaggerating), I was the ninth baby to survive this surgery at the hospital where I had it. It's been a lonely road as my parents wanted to protect me from being a guinea pig so I was never in any study groups, etc.

    Anyway, if anyone has figured out the key to staying hydrated, let me know.

    And yes, I drink mostly water. :-)

    I'm going to try drinking coconut water as I believe this helps with dehydration, electrolyte imbalances, etc.

    I'll keep you posted on how that plan goes. No one seems to have an answer though all medical people are sympathetic. 

    I see many people here are a good decade younger than me. I'm no medical expert...but I might have some insight from the patient side or at the very least complete empathy for you.

    I purposely vote agains the anti-diahrea pills. They don't really do anything and quite frankly long term - that stuff is not good for you in other ways. (Again, not a doctor...just my own humble opinion here)

    For diahrea and weight issues:

    I stopped eating any gluten. I have to say that did wonders for keeping weight on - and I am not celiac. This is all the digestion thing. I stopped two decades ago and really have been feeling much better. Just an FYI that it takes about 3 months to get that stuff out of your system so it's not an overnight remedy.

    Avoid food coloring, avoid too much caffeine (coffee makes everyone go to the bathroom, but for us it's worse - I do drink coffee but carefully planned...), avoid a lot of sugar (I see someone here already posted they don't eat sugar - good for you! I haven't completely cut it out - but that inspires me to do so) 

    I still find that I am constantly hungry like I am craving something but I can never put my finger on it. Anyone else have that? My guess is it is related to not having enough hydration as it has been happening more lately.

    Best,

    Shari

     

    • Cleigh2012 Cleigh2012 sabermantoo

      Hi Shari!

      I too suffered from nec as an infant in 1979 so I hada rough"Guinea pig" experience, especially for the doctors. I eat just about anything but I'm addicted to caffeine so I know that needs to let up... I am curious about the Gluten free option. I tried p90 cider and that was a hard one to digest- literally. I also had to drink ensure to gain weight. I will try to cut out more sugar though. I don't drink enough water but I have suffered from painful constipation, and with my condition, I've ended up in the emergency room for it. I was born 7.5 weeks early, but I'm still here in my mid-30's. Any advice would be helpful

    • sabermantoo sabermantoo Cleigh2012

      Hi Christy:

      Just saw this...replied to your previous comment. Yeah - I love caffeine too. My advice is treat it like some people treat alcohol - for every cup of coffee you drink, have a glass of water so that you stay hydrated. :-)

      The thing with the gluten free option is that you have to give it a few months to clear out of your system. It did really help me. Also, as mentioned in the post I wrote earlier, avoiding fatty foods and eating leaner meat will help keep you absorb more things your body needs as it will slow down how quickly it all goes through your system. At least that's my theory. :-)

      I should (and really have to get better about) take vitamin B complex. This is a vitamin your body may not be getting enough of due to the surgery. Some people need shots (depends what part of your intestines they removed) but I find if I (remember and) take high doses of vitamin B enough gets absorbed.

      Keep me posted as to how things go. You're going to live until your 95 at least. :-)

      Best,

      Shari

  • j33032 j33032 Purplepower

    I am so excited to see a group dedicated to this. I was born in 1979. My birth weight was 3lbs. I was 8 weeks early, and was a twin. I also suffer, and have always suffered from chronic diarreha. I had half of small and large intestine removed. I was diagnosed with short gut as well. I was also curious if this puts us at an increased risk for Chron's or anything similar.

  • Purplepower Purplepower

    Hi everybody,

    I realise I started this discussion a while ago and have not since responded to it - disgraceful on my part!

    It is so great to see so many people discussing our condition and how best to manage our symptoms etc. It's also extremely interesting to see that although it is a very rare condition (or was when I was born in 1986 apparently) that so many others are out there.

    All of the different advice is great - even some doctors don't even know what to recommend so that's great that we can help each other smile

    I'm always tired so I thought I'd try out the coconut water recommendation see how I get in with that smile

    I also meant to ask, does anybody else have trouble in the sun / heat? Do you find that this seems to exacerbate things?

    Thanks again for all your comments,

    Kind regards,

    Amy

  • wayne66026 wayne66026 Purplepower

    Hi Guys 

    My name is wayne and live in wiltshire uk, I was diagnosed with Nec when i was born in 1978 and was considered a miracle i survived at one point being given my last rights, Unfortunatly thats all i know all the records to say if i had any surgery ect have been destroyed due to the hospital closing a long time ago leaving me with small snippets of info on what happened,i dont know if i have short intestines or have had part of my bowls removed as all you other guys do,So for 37 years i have been shooting in the dark with local gps not even recognising what i had or still have,all i know is i had  always been a sicky child stomach bugs ect i just thought it was a nervous thing, Ive been through quite alot losing a child at 4 days old as she was very ill, preassures at home with kids family ect and always dealt with it fairly well, untill about a year and a half ago when i had some sort of stomach breakdown or something shivering,diareah, not feeling right in my mind and ever since then ive not been to the toilet properly maybe 2 weeks of normal toilet i changed jobs as i thought i had had a nervous breakdown,My weight or the lack of it has always been an issue for me and its really conforting to know others suffers this problem too, My brother in law is a jockey and says i would make a good jockey as i keep the weight off but i want to put weight on i shiver in the winter and still in the summer cant sit in the sun long ect ect, So my questions are 

    1. How i know that anything has been changed to my internals?

    2. is there any information on long term effects in adults with nec ?

    3. any tips on how to gain weight i find there is a cut of to my weight usually 10/1/2 stone before i start losing again.?

    4. i now take rpobiotics and aloe vera daily and have found this works in controlling the stomach pains in the mornings and fibregel 1 daily to bulk up my stools this is soluble fibre which may make me loose weight too 

    5. I was prescribed 40mg omeprozole and domperidon 20mg daily for 4 years is there any evidence that this could of made my condition worse.

    im truley greatful i have found you guys and any help would be great thanks take care all.(sorry for any spelling or grammer i dont usually write as much as this lol)

  • Giging Giging Purplepower

    Hi everyone. I have a 14 yr old who was born at 30 weeks. 3 days in he got NEC. He spent two weeks in intensive care but never went through an operation and hasn't had any bowel or intestine taken away. Do you think he could still have problems though. He suffers with stomach pains n goes through bouts of very loose bowls. He doesn't suffer with weight loss, if anything the opposite, although he is going through a growth spurt so weight is begging to drop off. Any thoughts would be very kind. X

  • clara89261 clara89261 Purplepower

    Hi my name is Clara, I'm 22 years old, and I was born at 25 weeks. I had necrotizing enterocolitis but if any surgery was done it wasn't major or else I'm sure I would know that answer for sure. It's so hard to find any information on lasting effects for nec. For me personally I've always had digestive issues but doctors aren't really sure what's going on exactly. In recent years is when the diarrhea started to be a big issue for me along with some other symptoms. I've been on omeprazole and also took cholestyramine but nothing was really helping. I've had a colonoscopy but what they thought was colitis ended up not yeilding any kind of solid (insert stool pun) results. I'm having a lot of thyroid issues and doctors think I've got an autoimmune disorder on top of everything else because I have issues with what they think is psoriatic arthritis and getting infections easily (I know I sound 100 years old) but we haven't found anything yet that explains everything I'm going through, not for lack of trying/testing. I'm actually not able to lose weight, like at all, but that's the thyroid mostly. Whether my issues are related to nec or not, it's just nice to find a page that is actually talking about this topic in general. I'm just wondering if maybe some of my digestive issues are actually linked to nec. I just feel like no matter how minute or severe everyone's situations were, it's still a big deal and is definitely affecting all of us.

  • chandrell25 chandrell25 Purplepower

    Hi, I was looking for information on necrotizing enterocolitis in newborns. my daughters was born at 33 weeks premeture and at 2 weeks she had an bad infection and had to get in operation on her bowels where she has already gotten about half of her short bowels taken out. she is still undergoing the prosedure as they have her stomach open with the vak tub hooked up to her and they dont want to do another surgery as she has already has 3 surgurys. can anyone help me as what is to come and what long term problems my daughter might have in the future???? please help!!

  • katlin65202 katlin65202 Purplepower

    My name is Katlin, I'm 26 turning 27 next month. I was two months premiture and also have a twin, he was healthy. Spent my first two years in the hospital, consisting of three major surgeries, small and large intestine removed.

    Chronic anemia, due to internal bleeding resulted in several blood transfusions in elementary school. Followed by iron treatments up until highschool. Since highschool I've had a kidney stone and gallbladder stones that had to be removed surgically due to my bodies inability to break down nutrient's correctly.

    Healthy I thought, now I can live life? We anyone with NEC I'm sure haS IBS, and throughout life has struggled with chronic diereah, however two years ago I got a blockage that almost made me septic..... This girl who can count on one hand how many solid stools I've had, had a blockage???? Well recently I've been experiencing the same symptoms, instant bloating after eating, extreme gas, pain in my stomach, as well as no longer feeling empty after I go to the restroom. I was curious if anyone in this group has gone through this or experiencing the same problems later in life?

    Thanks!

    • Purplepower Purplepower katlin65202

      Hi Kaitlin,

      My Name's Amy and i'm now 30yrs old - I was so pleased when I started this discussion, how many others there are out in the world that have experienced the same or similar.  Although, obviously, it would be nice to say that nobody else has suffered this as it is not the most plesant smile however, it's good to have support for each other.

      I too had chronic anemia, they never did find out what the cause was, they thought it might have been polyps but never found any. That has now changed to pernecious anemia so goodness knows what changed inside. 

      I too get instant bloating after eating - regardless of how healthy the food is, extreme gas seems to be a given however, oddly, I had to go for an colonoscopy recently and that seems to have sorted that problem (albeit temporarily no doubt) the stomach pain is also something I live with - I also often feel like somebody has put a tight band around my chest (just under my breasts) and find that I bloat from there too, its painful too, sometimes so much so that I can't face to move or eat, is this something you suffer from also?

      With regards to the loose stools, I have yet to find anything that helps, some of the discussions above mention pills etc but these only seem to make me more bloated and unable to go. 

      Do you have much of your intestine left? 

      Thank you for getting in touch and look forward to hearing from you shortly.

      Take care,

      Amy

    • katlin65202 katlin65202 Purplepower

      Amy,

      I lost four inches of small six inches of large, and the valve inbetween. They to could not figure out where I was internally bleeding from.

      I am no longer anemic, however in high school we started doing in-fed iron treatments. My mom actually went to school and became an RN as a result of my illness.... She was my advocate and usually told the doctors what we were going to be doing.

      She asked me to ask you if you've had the size of your red blood cells checked? They may not be maturing fast enough to thrive. I suppose that's why we did the in-fed iron, which really worked and gave me energy.

      I'm greatful you've started this chat. I've NEVER been able to relate to or talk to someone with the same illness!

      I do get the bloating when I eat, I've gotten to the point that if I don't "feel" empty after going to the restroom for a few weeks, I take laxative... I'm not sure if I have scar tissue built up in my intestine. I do get that pain high in my chest, usually on my right side, I've always associated it with gas....

      Do you take iron pills? Or anything of that sort? How much intestine do you lose and where?

      Best reguards and thank you for the reply, my mom said if you'd like to discuss with her ever she would be willing to do we brain storming.... Anyhow looking forward to hearing from you!

      Katlin

    • annemarie55044 annemarie55044 katlin65202

      I am 28, and ha NEC as a baby I am currently undergoing investment into sibo small overgrowth in baterica it left me to the stage where I be sick gas bloating and now I've never took on any special diet when I was baby aye but as I got older I just eat what I like but it has affected me now as I've IBS AMD now over growth I find hard to keep weight on or something I go opposite I hope this help xx

  • KatlynWhit KatlynWhit Purplepower

    Hi,

    My name is Katlyn and I am 17 years old and I was born 12 weeks premature and I was diagnosed with NEC 2 days after I was born. I had alittle over 6 cm removed the first time at only 3 days old and they patched up a hole.

    But that wasn't the beginning of the surgeries. I haven't had any problems with my weight or what I can and can't eat but I eat cautiously anyways.

    When I was 5 years old the hole reopened without any warning and I had to get another surgery to repair it again. The doctors still to this day 12 years later can't give me a reason why it re opened.

    It is so nice to read about people that have the same disease as I did and to read all of yalls stories.

    I still have to go yearly to the hospital to get checkups and monitored to make sure it doesn't reopen. Doctors told me that babies with NEC usually don't live normal lives but look at all of us beating those expectations!

    Thank you for yalls stories and help tips!

  • anc44 anc44 Purplepower

    I had NEC surgery as a preemie, and I'm 28 now. The surgery left me with a huge abdominal scar that goes from boobs to below navel... and then across navel the other way. I started having bowel issues when I turned 25. I've been having worsening chronic constipation since then. Before, it'd be a few months in between episodes. Now it's a daily struggle to stay on top of symptoms. I have lower abdominal discomfort that begins right at the bottom of one of my scars - and my skin feels like it's on fire sometimes. This skin feeling has begun in April.

    I see a physical therapist for Pelvic Floor Therapy, who has worked on my scar tissue. No one has ever touched it before, doctor-wise... no one thought it'd ever be a problem. I guess I have all kinds of adhesions. It's a painful existence - one that I wouldn't wish on anyone. From the outside, I look fine - but no one has a clue half the time how I really feel.

    I've been seeing a GI doctor for 3 years. They have me on Linzess and it's just... so frustrating. It's not enough. I'm always worried I have something more sinister going on. I'm trying to make an appointment with a new GI in a new practice, just to get a new opinion. Had a clear colonoscopy two years ago, have had clear CT scans and x-rays that always show Constipation only...

    Basically, it's been a weird thing. I had no issues growing up. Nothing super wrong until turning 25 and I'm 28 now. I'm also looking into endometriosis.

  • kaylin2011 kaylin2011 Purplepower

    Hiya,

    I'm Kaylin, it is really great to find this! I am soon to be 24 and I have been dealing with almost all of these issues my whole life but more so this past year or two. I was a premie with my twin sister and I had almost half of my small intestine removed and some of the large intestine.

    It feels like my life has been a medical nightmare with no explanation any doctor can tell me. I get agonizing pain for days to weeks , I've been told it's gas, heartburn,even a appendicitis ( joke was on him mine was removed with the intestines) but no one can tell me why I get this painting or how to help. It feels like it was described above like a tight band just under my breasts. I have noticed though it does hurt worse when someone pushes near the gallbladder but I don't have gallstones so no dice there sad

    I have had constant diarrhea for almost a year now and I'm 90% sure I'm anemic. It just gets so tiring hearing over and over nothing is wrong or its gas or heartburn ect. I know what my gas pain feels like and my heartburn pain feels like but no one will listen to me. It is impossible for me to even get to a GI in any time under 6 months. I'm in the Navy and every time I even try to get help I basically get shoved out the door because they think I am just making this up.

    I also get the random burning pain under my skin but I also noticed it is in different spots on my body like it's completely random. I mean there must be some doctor out there that has looked at the long term effects by now haven't they? I just wish I had answers instead of the general diagnosis because it's the easy route

    • Purplepower Purplepower kaylin2011

      Hi Kaylin,

      Lovely to hear from you and welcome to the group smile

      I too have that pain described under my breasts like a tight band. I recently went to hospital A&E with it, I was in for a few days being dosed up on pain killers and starved. They finally came up with the idea that it was probably food that had become trapped in my bowel due to abrasions and scar tissue. However, I also went for an ultrasound and they found that my gall bladder pipe was slightly dilated which was allowing more bike than usual to pass. I'm not sure if this was the cause of the pain. I was also told never to eat dried fruit such as raisens or dried apricots etc.

      I know how you feel with being fobed off though and it's very frustrating!

      I hope you find somebody that will help smile let me know

      All the best,

      Amy

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