# new in new jersey, feeling very alone in the world...



## Shannon April (Aug 5, 2015)

Hello,

I try to keep my spirits up but I write this with tears streaming down my face. 5 years ago, i had internal bleeding from unknown source. i literally woke up bleeding. i was taken to hospital a few hours later and flown to city hospital a couple days later. a day or two after that i had a complete colectomy, small intestine attached to my brand sparkly new surgically created rectum. the surgeon considered it a success after a year. officially they believe i had diverticulitis with no symptoms until the bleed. i spent 40 years eating what i liked when i liked. i have not had a day of peace since the surgery. i have terrible sharp pains, no hunger pains (stabbing pains instead-said to be nerve damage) ive had one sx for bowel obstruction and adhesion since. i cannot eat any gluten at all (i never had one day of gluten intolerance before) i have extreme gas and diarrhea or constipation, i am constantly self conscious and if i am not throwing up because im sick, im throwing up because i make myself as the pain of food is unbearable. i eat terribly as a result, not at all during work because i am afraid of what will happen to me, and terrible foods when i am not working. i can't eat veggies, i can't juice, i can't have fiber AT ALL, i can't eat wheat, alcohol leaves me on the toilet for days, i feel like i always smell like feces or gas (im pretty sure i don't - im VERY self conscious and VERY careful hygienically to the point where i use bleach cleaning wipes---yes. it's come to this) never a small woman--i now have thrown myself into a fat prison because if the 18-20 hours of not eating 5xs a week. i have tried one specialist who did a barium xray (it took 4 hours and remember.... NO COLON to go through) and a colonoscopy (again---no colon??) /endoscopy where i was told everything looked okay. i am not okay. i am in pain, and mentally i am suffering so horribly. i can't get close to anyone in a relationship because---how do you explain? how do you feel sexy? i feel like my life has been ripped away. i don't have answers or honestly as a single mom the time to track down answers and medications. i think i just want to know that i am not alone, that there is someone else out there to whom this has happened. it would be such a comfort just knowing that.

TIA-Sapril


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## Jen37 (Nov 10, 2011)

Tia-Sapril,

I just wanted to chime in and say I am so sorry you are struggling. I cannot say I have went through what you have, but I have been through a whole lot health wise in the last 12 years. I got sick with a odd virus back in 2003 ( 2 weeks after getting a flu shot) that attacked my whole upper throat. Out of the blue within hours my throat felt like it was on fire. I am not talking about a bad sore throat. I mean it felt like someone was holding a torch on high down my throat. I suffered with this for over a year and half( had to stop working and even ended up at Mayo clinic trying to find out what was wrong). Long story short, Mayo clinic told me I was sick and that I definitely had something going on, but they were not sure what! Yeah, $10,000 later and no answer. What a joke that was. The throat burning finally got better after a year and half, but then other stuff started happening. I would eat only a few small bites and feel like I ate a whole turkey. I would get severe bloating and pressure. I was literally living off of baby food. After about 2 years suffering with this I decided to go Gluten free since nothing else was helping me. After being Gluten Free for 4 months I started being able to eat more. So gluten was definitely aggravating things for me. However, I also during this time started having horrid bladder pain. It was like I had the worlds worst UTI, but constantly. It felt like I had 1000 canker sores in my bladder with lemon juice poured over them. Suffered for a few months before I was diagnosed with Interstitial Cystitis (IC). It is a nightmare disease. I have been dealing with it since 2005. Three years ago I started having loads of pain, soreness and cramping in my intestines. It was to a point where I was literally glued to a chair with my heating pad all day almost. Went through many tests which came back fine. GI doc dx me with IBS. What was weird is that my BM's were completely normal at the time, no diarrhea or constipation. Just severe pain all the time. Well fast forward to the beginning of July, I woke up one morning went to use the bathroom and had a bout of water diarrhea, I have not been the same since. I have intestinal pain and cramping all the time. Thank God I have been only using the toilet once a day ( though I would be going more if I were moving around, but due to pain I am literally sitting or laying around with heating pad for a little relief). IC and diarrhea do Not mix. I am Very prone to getting nasty UTI's so if I get the runs a lot it means a definite UTI! A UTI on top of IC is like a living nightmare in terms of pain. I cannot even describe it.

I will say I can relate to your wiping yourself down with the Clorox wipes. I don't do that, but when I have a BM I have to literally wipe and wipe and wipe until it is super clean. Then I bottle wash for good measure and have to take a shower even after all that! I was told by a doctor that due to my risk of getting UTI, I cannot get diarrhea. ( Yeah, like how does a person control that???). I was told to shower thoroughly after each BM, which is why thank God I have only been going once, but when I do, it is nasty messy( sorry if TMI), and then afterwards I am in agony for hours. I worry I may be getting worse and I cannot imagine having several BM's a day, I would have to live in my shower!!! It gets exhausting, but I sure do not want a UTI. And believe it or not, I still will get a UTI Dealing with so many painful issues is exhausting in itself. I lost my life 12 years ago. I was an energetic outgoing person before becoming sick. My husband is very supporting( thank God), but I know it must be hard on him too. I went from being an active member of society, holding down a job, taking care of my family to being in pain daily( sometimes pretty severe) to a point where I cannot even get out of my PJ's ( except to take a shower). This latest thing with the loose stools( I have not had a normal looking BM since July 6th), horrible pain and dealing with all my other health issues is just to much. I just wanted you to know that you are not alone. I am sorry you are going through all this, I really am. My heart goes out to you. I pray somehow you will find something that will give you some relief. Oh, I wanted to mention, did anyone ever test you for gastroparesis?? This is where the stomach does not move adequately, the peristalsis is too slow. I believe a gastric emptying study is the test they do to check for this. People that have GP ( gastroparesis) will eat and can feel sick afterwards due to the food not moving through the stomach like it should. Just thought I would ask. Hang in there hon..


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## jaumeb (Sep 1, 2014)

I remember there was someone with no colon in the btvc-scd yahoo support group.


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