not making it up!

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carebear25
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/28/2007 8:43 AM (GMT -7)   
any one out there relate to fact that when you go see new docs or to hospital and have to explain and reexplain colonic inertia or any thing like it that is rare...and you get the ocmments, so is that becuase of an eating disordrer??  i am very thin and have been healthier with ostomy but since my ostomy was removed for colectomy i have lost good amount of weight.  i am not sure as it could be many factors...but now docs are telling me maybe just go back to ostomy for life if it helps you eat, gain wt and be healtier
 
ok well what if i am screaming inside becuase i really had hard time with ostomy.  i don't think i have an eating disorder but i know i struggle with body image issues with having a bag again...i know i like to stay fit but it's mostly stress that wears my body out.  i can hang in there with pain but i have recently lost a best freind this year due to simliar illness, my sister is ill alot and well, tryig to keep up with college workload too.
 
i have a psychology major and now working on art.  so i know enough to know i have a tested diagnosed condition called colonic inertia...but i guess i blame myself more when i get comments like stop tryign to get attention or get sick becuase your sister is sick...or just gain weight and eat more food that's your problem
 
my small intestine has slow motility too so i get full fast and can't eat alot at once...but i get frustrated and get sick when i give in to too many cravings...so yes i do get sick but i just want to be able to eat and poop and be normal.
 
i am most scared to go back to ostomy emotionally like i am going to lose it and get really depressed.  i am strong but lately i feel so overwhelmed and that is making me want to puke more.  i am not bulimic but i know i am struggling with things....
 
i am scared....and i have to decide about school and srugery by next Tuesday....when bills are due for semester....i do find some herbal supplements help me go without needing to many laxatives but i think over time it's jsut wearing trying so hard to "go"
 
i live on Starbucks and my diet sucks!  by evening i crave comfort things becuae i want to cry so i paint and paint and watch movies, call friends....but i am in my early 20s and most of my close friends say they couldn't deal with an ostomy
 
i have done it before but granted 10months was my peak.  i was sooooo ready for it to come out and this time would be for life....i wish i could deal with flashbacks better and triggers from being sexuall assaulted in college with ostomy and then to not think i am trashy and ugly with a bag or without it
 
how do you feel good about yourself with an ostomy if you struggle without one?i am sorry to vent but i don't know where else to go and i need to let it out
 
carebear

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/28/2007 10:56 AM (GMT -7)   
Carebear,

I can relate to a lot of what you talk about. Nearly every Dr I go to says that I have an eating disorder. After having a TC, which caused me to vomit because of my motility issues, I was accused of self-inflicting the vomit. I have never, nor do I have the desire, to make myself puke. UGHH, just thinking about vomiting makes me feel sick. However, because I was very thin (before my ostomy), I was always accused of having an eating disorder. I used to make my husband come with me to the appts so he could validate that I was not making myself sick. The Drs never accused me of having an eating disorder in front of my husband which ticked me off even more. The last episode had really left me feeling bitter. I went into the hospital last Saturday because my heart rate was elevated, I was short of breath and having a hard time breathing and my stomach was severely distended to the point it was painful and hard as a rock. I called my Dr and she told me to get to the hospital asap. I was in the hospital for 4 days and they could not find the cause of the problem. Therefore, the problem must be in my head and they said I had an eating disorder. They called a psychiatrist to come speak to me. I was livid. Like you, I have a psy degree and I felt very insulted. I agree that I like being fit and I did not want to gain weigt with an ostomy. I teach fitness classes and I like wearing my clothes, I like exposing my abs when I workout, I like the complements people make on my body. I have gained about 5 pounds since the surgery and I am trying to feel ok with that. I cannot wear anything that exposes my belly at the gym and I am fine with that. I have to be careful when I teach at the gym because when I reach my arms high in the air to stretch with my class, my bag will show. OK, so I have some vanity issues..I can admit that. However, I do not want to take medication for this. Everyone in the world stuggles with some sort of dysfunction and this one is mine. It does not mean that I go without food or make myself vomit it just means I work very hard to eat healthy and workout to stay fit.

Here is why I am glad I had the surgey, for the first time in nearly a decade I ate a full meal with my family during Christmas dinner. That was great! That made it worth having the ileostomy.

Carebear, you have to learn to let your body image go. You are not going to get fat with an ileostomy. You are going to get healthy. Don't deprive yourself of health just because you might gain 5 pounds or so. If you do that, you might having some type of imagine complex that may require you to seek professional help. I hope you have the surgery. This forum is here to help you get through these tough times and we will be here after your surgery to support you.

I have my photos up at photobucket.com. You can look there and see what I look like 3 weeks out of surgery with my extra 5 pounds. I bet you no body can tell that I gained weight but me. So, now it is our little secret...ha, ha, ha.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


carebear25
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 12/29/2007 8:25 PM (GMT -7)   

Thanks so much Amey for your post and response to mine....thank you as yes, i made hard sticky decision to go back to the ileostomy actually surgery date is Feb 6th 2 days before my b-day...i am trying soooooo hard to just take it with a smile and postive attitude. cuase last timtet i had alot of nausea with the ostomy and lots of leaks, skin irritations and such but i am hoping now going to a different hospital and new stoma nurse be more assistance and advice availuable

i appreciate your honesty about your own experience and feelings.  i too tryi to see this as what i need to be as healthy as possible.  i feel peace of God not going back and forth on deicison anymore but i can't say i am not scared.  I know God is going to walk on water with me and just asks me to take first step out of the boat and trust Him.  AFter past 2 surgeries and some bad experiences it is hard to trust again and not feel afraid of more infecitons and near ICU trips...but i have a new surgeon and going to a didfferent hospital and hoping this will be better experinece.

i withdraw from school for the semester this Wed and that will be tough but ok. i do see a counselor for preivious trauma stuff but she has a medical background so helps me with medical issues too.  i am going to use this site for support and i will suirely need it too!

i thank you for your support and i am soooooo happy you got home for Christmas and that you got to eat Chrismtas dinner.  i guess i am looking at positive things i will be able to do again like eating with less fear of constipatoin.  granted, you and i both have slow motility over all but it was better some what with the ostomy before.

wow, i gained over 20 pounds over 10 months last time had bag but also was very very malnourished and so it was a good thing.  i also was on a simple sugar. low residue diet so it was easier for my gut to break down carbs and put wt on easier....what kinda things do you eat, same as with colectomy or more restricting now that have stoma?

i don't eat raw veggies or fruits, only nuts when chew like crazy and can't do alot of carbs cause it blocks me up faster.  i live on Starbucks and chocolate. with ostomy did alot of souops, icecream, smoothies, cereals, oatmeal, crackers, soft stuff but often high caloric...i was in dorm too so i ate by myself very embarrassed of my ostomy leaking often with output but i think being home this time will help.

i reallky don't know if i made right choice because i look so good on outside and so strong and people don't get why i need srugyer if i look fine.  or just thin always been so.  but i have had friends with similar illness die due to poop issues and blockages and that may sound crazy but true.  peeps don't realize how much we taking going to the bathroom for grainted and how sick it can make you if you can't evacuate toxins out of your body

i guess for me i woke up early this Thurs already deciding going back to school and then it hit me.....the problems the meds the pain not going away.  i cuold distract myself with art, school work with keeping busy with comfort food, exercise, etc but it was still my reality.  the test results came back ok no obstructions so i thoruhgt hey, i am fine...but deepin my heart i woke up knowing i need to take care of this before it gets worse....or before i really start beliveing more and more the lies that this is my fault or an ed or in my head....

i am gettin more stressed trying to hide my bowel issues and say it's ok...and living off laxatives...i don't want to take anymore!  yeah i look ok but i am very thin and i know that in this culture it's ok but i hate passing out feelign dizzy and that's not ok!  it's not a bodyimage issue for me or an ed. i have a real illness,that is rare but i am not making it up.

thanks again as your email validated me too and i feel less alone AMey

thanks again

carebear


danaalbertine
Regular Member


Date Joined Apr 2007
Total Posts : 34
   Posted 12/30/2007 2:02 AM (GMT -7)   
Hi carebear,
I don´t know if you have read any of my postings in the colonic inertia thread, but I had anorexia when I was 12 and got dysmotility problems in all of my gut afterwards. I went from one doctor to the other and ALL of them said that I was just making it up and that I still had anorexia...this went on for over 10 years!! Two years ago I did some more tests and they showed said my stomach, small and large intestines are way too slow. But still now, most doctors say that this is just a side effect from my past history of the eating disorder. I was in various treatments and therapies and none of them helped, so they even sent me into the psychiatric ward where I wasn´t allowed to leave!!
I am very underweight because I also suffer from malabsorbtion and I have had a feeding tube that goes right into my small intestine for two years now. I wish I could get a total colectomy but the doctors here( I am from Germany) don´t understand my condition and since I am so thin, they wouldn´t do it in first place.
I am very frustrated right now because it seems to get worse and worse. I have to take more and more laxatives and they just don´t do their job anymore. I have tried everything without any results. The pain is incredible.

Anyway, I just wanted to let you know that I totally understand you and that you are not alone in your situation.

Hugs,
Andrea
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