Hello,
I've been in and out of so many GI MD offices, ER's and hospitalizations in the past 1 3/4 years that it sickens me to even think about worse yet, I'm heading right back.
Living in the outer boroughs of NYC, I figured, "this time I'm going to MT. SINAI for treatment of my severe constipation (where I just "do not go" and up until a month ago, high tap water enemas w/Mineral oil preps got me sometimes a little relief. However, it's been over a month and nothing but barely some diahrea as I no longer can even expel 1500 mls enemas, even the mineral oil dissappears within me.
I recently asked for my records of my tests from MT SINAI and little did I know (cause my GI MD put in charge didn't tell me) that I suffered from "Severe Global Colonic Inertia", with impaction and Divertulosis in Sigmoid area, in left side (could be more but they only did sigmoidoscopy) so my right side, proximal colon which causes the severist pain and is ROCK HARD...well, when I got my records it all made sense. What didn't is, why they released me. I went to 3 local GI's and even a local surgeon and all said "you need immediate Surgery" some combo of colostomy or possibly anostomosis w/colectomy...
So not only do I have NO TRANSIT (from a 120 hour, extended from 96 hour test) called, "SCINTIGRAPHY" to measure colonic inertia from GP, SI to LG instestine. In that by 120 hours, the dye was still at my cecum w/some small portion heading towards transverse colon. But, he made no comment to me about the results and made no acknowledge of in his records. Yet, the attending "rushed" to give me this sheet of paper to wife and said, "do something about it quick". But we didn't know...what that meant...until all these recent GI appts all explained to me, just why I'm suffering so and what surgeries might help.
The worse yet part, is that I have some kind of Outlet Obstruction too. This may sound odd...and it's still odd to me, but, nothing comes out, unless I"m STANDING? And I barely get the water out from enema.
I'm frightened. Now my wife, who left me last year cause of my health issues...is threatening to leave again because and I quote, "can't go through another hospitilazation again", whatever happened to "for better or for worse and in sickness and in health"?
She tends to blame all my problems...on me? As if I"m causing them, despite medical evidence of real problems.
I'm so disgusted..........so alone....and on top of everything, there's no support from loved one's...but anger. Tried to get her to support group...she won't have it.
Meawhile I"m facing a possible double surgery, haven't a clue with what to do and now I have to worry about this once again.
Total nightmare...and Well, I just had to share it with anybody who'll listen/read.
Sorry for the sob story and I pray for all of you who are suffering right now...for nobody should suffer like this. I can barely leave the bed let alone apartment for MD appointments...and at still relatively middle aged, I still have a lot of life in me and yet, I'm so tired and so weak, I just want to give it...except I don't know how to "give up"?
PS...lost so much weight cause eating hurts me so much/nausea etc...6/1" tall and down to 123 lbs.
Anyway, love and prayers,
Jay (NYC)
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double colonic surgery ahead and can't get a break
- By JCatGuy
- Posted September 7, 2008 at 2:29 am · 10 replies
- In Dealing with the fear
- Shared with the public
Explore topics in this discussion:
Systemic sclerosis Cancer Surgery Barrett's esophagus Ulcerative colitis Interstitial cystitis Pneumonia Ostomy Scleroderma Osteoporosis Osteoarthritis Colonic inertia Pulmonary hypertension Stress Breast cancer Constipation Hypertension Pain
10 replies
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- Newest first
- By Charlotte1
- Posted September 7, 2008 at 8:14 am
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Jay,
My heart is breaking for you. No one should have to deal with a choice between their health and their marriage. I know that I am blessed by my husband who has stood by me thru thick and a lot of thin.
Please come here and vent as you need to. You will find people that care and will listen.
You are in my prayers.
Charlotte
- By Kate1
- Posted September 7, 2008 at 8:33 am
- Report post
Jay- I am appalled by the way your GI doctor handled your situation. It is horrifying to think how negligent some doctors can be. I hope that you are getting better care now that you have sought other opinions. It must be so scary to be facing surgery and dealing with all of the problems in your marriage at the same time. This is when you really need someone by your side. Please come to this site to vent as much as you need to. I hope it gives you a little relief to at least have some where to go to unload some of this.
Kate
- By jacy1
- Posted September 7, 2008 at 2:21 pm
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jay
This is a great board to vent and to get help from others in what they are doing to cope etc. Sorry that your illness is causing marital issues. I too am so lucky that my husband has been great during all my issues with the extreme constipation and outlet obstruction. What you describe was my life all of 2007, aslo had the outlet obstruction and loosing weight, getting sicker and sicker etc. I ended up with a permanent colostomy as a fecal diversion. While living with a bag takes some getting used to, it worked for me and I have a life back. Surgery was done thru by laporoscopy , was in hospital for five days, but recovered well and am able to do anything except lift weights or do heavy abdominal workouts. If you have any questions I'd be happy to e mail you. There is also another discussion board that I am on for people with ostomies - www.uoaa.org.
jacey
- By spook1986
- Posted September 7, 2008 at 10:15 pm
- Report post
Jay, have you been seen by a colo-rectal surgeon? I am having my colon removed Sept 15. The plan is to leave the rectum, but who knows. I'm hoping I'll have no bag.
The vows are 'for better or worse.' We can only hope your wife will have a change of heart.
I'll post when I get home from the surgery and let you all know how it turned out.
Linda
- By JCatGuy
- Posted September 8, 2008 at 2:06 am
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To Kate, Jacy, Spook, Linda...(and the board).
Thank you so much for your kind words and support. I wish I can wrote more right now, but pain is quite severe for as usual my mineral oil over night prep 60 ml and MO enema, followed by 1500 ml Tap Water enema, produced nothing...barely got the water out and I'm in so much pain.
Just got chewed out that "it's all my fault" and "my attitude" and if i just just jump up and be more active, I can cure my "Severe Global Colonic Inertia" by myself.
If that were only true. 4 GI/MD's already have clearly stated, it's my only chance at a normal life (or life at all).
But, well...unfortunately I went to a surgeon who was great (head of NShore in Nassau) but he put me off to a collegue who just got her General Surgery degree and is practicing under him and she wanted me to re-do colonic transit but doing "sitz marker" when I've been through all that and via Nuclear Medicine, the Scintigraphy cleary showed after 120 hours that the isotope, stayed bet. my Cecum and Transverse colon, when after 48 hours it should've been in my rectum (geometric center 6.4) and mine was 1.0 and 72 gone completely (my Geometric center of activity was only 1.4) mostly still in Cecum and some heading towards transverse colon.
So, well, since the pain is so severe can't even eat...even barely drink, I have such rock hard impaction/fecolomas in proximal colon that I'm just in tears from the pain, plus...I'm so very hungry too!
But, it's all my fault, someway, somehow...and always.
Yes, for better or for worse, and in sickness and in health and i was always there for her osteoarthritis and fibro pains over the years...it's unreal.
So, I heard of a Dr. Bonapace (Motility expert), if I can make it to appt. on Tuesday, I'll try to go. However, I already think I know what he'll tell me and unless he has a waay to disimpact me (since Goltye and high enemas don't work)...there might not be possible and so even though he's using "electrical stimulation" at the 4 pts. of colon...I might no longer be a canditate.
But I"ll continue to write and thanks again for your warmest of words and concerns and suggestions...
Jay (NYC).
PS....I'll look into that colostomy website too (thanks)
- By JCatGuy
- Posted September 8, 2008 at 2:09 am
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Forgot...
I was told by several GI MD's that I'd need first one surgery and then anostomisis(?)...HOWEVER, I have this strange outlet obstruction where (unlike pelvic floor), where my rectum is like an accordian...what a nightmare!
Jay
- By Kate1
- Posted September 8, 2008 at 8:34 am
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Jay- I hope you are able to get to your appointment on Tuesday, and please keep us posted. I also wanted to ask if you are on TPN or anything for nutritional support? I can't believe how low your weight is. My doctors worry about my weight when I fall below 110 or so, and I'm just a 5'5" woman. And if you can barely have fluids, too, I'm really concerned. Anyway, good luck getting to the appointment and I hope the doctor is able to offer you more hope. Hang in there and vent as much as you need to!
Kate
- By carebear422001
- Posted September 9, 2008 at 4:51 am
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Hi Jay, I just wanted to let you know that I know exactly how you feel in both situitations, I was 18 and diagnosed with ulcerative colitis and chron's , I also had a daughter that was born with spinabifida and six minutes after my precious angel was born my so called husband walked in and told me she had too many medical problems for him to deal with and he just left me. I was devastated myself being sick and now this special needs child that was expected to live was my sole responsibility, anyway she lived to the age of 12 and died in my arms in 1999. I had taken great care of her but let my health go. After my daughter died I had to have my gallbladder romoved in 2000 and on Sept.11,2001 I had to have the first part of my colon removed, this was to be done in 3 different surgeries with the hope of reattaching what I had left to my rectum well it turned out that It had gotten so bad that when I would stand up I would just loose so much blood that I would pass out needless to say they couldn't do the surgery to reattach everything instead they had to remove my entire colon and rectum and I ended up having to have a total colectomy and I now have an illieostomy and I have to wear a bag. I also have to wear an ostomy bag on my left side to because the doctors put my first j- tube in and didn't make the tract long enough so they pulled it out and now it drains bile daily to the point of having to empty it usually 4 times a day. I'm only 40 years old and am now on tubefeedings 24/7 and have other problems too. I got married a second time before my daughter died to a man that was 12 years older than I was and he left me because the doctor's thought that I had cancer and he told me " he couldn't go throught anymore hospitalizations either, well anyway he went back to his ex and she was diagnosed with breast cancer and he stood by her. I can't tell you why we have to go through what we do but I know from experience from all of the times that I was told it was my fault, I could do something about it if I just tried. I often wonder what happened for better or worse too. The only comfort I can offer you is that once your health is doing better you can deal with other things, and if you wife isn't going to be there for you then you don't need the added stress and agravitation of somone who doesn't care and understand what you are going through. But there's one saying you can bet will come true and that is "what goes around comes around" and your wife might not have any health problems that keep her down now but you never know what's in store for her in the future. Just know that we are all here for you and I will definitely say a prayer for you Jay and for God to help you get throught this difficult time and to help your wife to be more caring and compasionate and understanding so you won't have to go through all of this by yourself without any support . At least you have your friends that are here for you too lean on and to come here and vent to. If you would like more information on the surgeries that I went through you can e-mail me offlist at carebear422001@yahoo.com. Take Care and God Bless You Jay!!!! I hope you start to feel better soon!!!
- By pepperann26
- Posted December 23, 2008 at 1:35 pm
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there is a GI at buffalo general hospital, his name is Dr Merril Dayton, he was here in Utah and he was my doctor. He is fantastic, you can also go to www.google.com and type in Dr Merril Dayton.
He did all my abdominal surgeries, I think 7 but I lost count LOL
- By nogo
- Posted December 23, 2008 at 3:03 pm
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Jay,
Wow - I feel for you! I also relate. I sometimes feel like no one could possibly understand the things I've been through - maybe you can. When a spouse is so self absorbed that the health difficulties of their mate are an inconvenience and bother to THEM - it's a problem. I'm always amazed that there are so many people that self centered. I was married for 27 years to a very abusive man. Anytime something happened to me - it was a hassle for HIM. He hated hospitals so wouldn't visit - or if he did he made sure I knew he was upset. When I was giving birth to our first child, my labor was 22 hrs and he didn't want to have to stay. He said that I had the comfortable bed and he had to sit in a recliner! He complained about me making him stay for years - telling people how selfish I was! When I broke my arm and was screaming in pain - he wouldn't take me to the hospital until he showered, dressed, etc. The stories are endless so I won't bore you. He broke several of my bones and blamed ME for it- even blamed me for "putting him in jail" when he attacked me for the last time - pushing me to the ground and choking me with one hand while raising a clenched fist with the other saying threatening horrible things - I thought I was dead. I managed to reach up and grab his shirt which made him let go. He went into a massive tirade about how I stretched his shirt! How could I?! Then he lunged at me and tore off all my clothes - ripped them into shreds. I stood there horrified, shaking and crying. It was time to call the police! They saw the evidence and took him to jail - it was mandatory under the law. He put himself in jail - not me! So you see - you can be blamed for anything - it doesn't matter whether it's your fault or not! Now I have Systemic Sclerosis, Interstitial Cystitis, GP, Barrett's Esophagus, Scleroderma Esophagus, Pulmonary Hypertension, chronic aspiration w/ pneumonia (food comes up from stomach out the nose & into lungs when I sleep), osteoporosis, hypothyroid, and now MS! I've had a foot of colon removed during a rectal prolapse repair but it didn't stop the horrible constipation. I'm considering a total colectomy, but not able to see colorectal surgeon for months. A friend of mine with Scleroderma had to go into the hospital periodically to have stool removed - they put tubes down her nose and up her ____ and managed for a while - but now she has a colostomy. I imagine you've tried that route before? The choices are difficult because you are never sure how your body will heal and react. Drs that want a million tests that you've already done make me very mad - several GI docs have been that way with me. It's so frustrating I know. I'm so sorry you're going through this!
I thought I was in for an emergency removal recently when I developed an impaction that I thought would kill me. I was in so much pain, I was afraid the neighbors were going to call the police. I couldn't stop screaming even when I called my Dr. I had given myself 5 hot water enemas with no results and didn't know what to do. I had no car and couldn't have driven anyway. I don't know why I didn't call an ambulance but I didn't. Several more enemas later I got enough relief to get some rest. I got better but it's headed nowhere!
I am so glad that you pray - I assume you're a Christian. It's what has gotten me through all I've been through. I'm alone and on SSI and foodstamps and if it weren't for my faith and my church I wouldn't make it. My prayer is for you to feel confident God is in control (of the truly important things) and that you be blessed with a caring and competent doctor. Keep venting - I know it helps me. Your wife is missing out on a great relationship. She's the one losing here!
In His Love, Jan
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