Feeling so lost, please help!

Eric, if you are having angina with only light house work, it is definitely time to follow up with your cardiologist. Maybe you need angioplasty or something, I don't know. Only after that is sorted out should you consider returning to work.

13 feet of small bowel should be plenty to absorb the nutrients you need. If I remember correctly, transit time needs to be less than 30 minutes to cause short bowel syndrome. Unless you are constantly losing weight, you should not need TPN. Certainly, it has to be frustrating and tiring to be emptying your appliance so much, plus it is a constant reminder of your loss. Regardless, this is a good topic to discuss with Dr. Cohen, so he can order tests to diagnose or rule it out.

Have you considered major depression as a serious complication of your surgeries? I wonder if it is blocking your recovery, in addition to your physical problems... Perhaps you have not fully accepted your ostomy yet? I could be way off base, but could you even be having panic attacks about work? Excuse me if you definitely have angina. Still, it is possible to have both. I'm not so great on the mental health stuff, so maybe others here with similar experiences can advise you better. Plus, another topic to discuss with Dr. C. Major depression can definitely prolong your disability, so if you have it, it should be adddressed.

Returning to work can be a great thing, as it helps distract you from your problems. But it also is a big change. If you do want to go back to work now, I'd see about part time at first, a few half days a week, then work back up to full time.

Good luck, Eric!

Jan

Eric, I have very little to add to Jan's wise counsel, except to suggest you think hard about your statement "no hope of ever getting strength back." That just doesn't seem medically correct. Has your doctor told you that, or are you just feeling hopeless? Those are very different challenges.

Eric there are lots and lots of things that can be tried to slow down the transit.
My ileo #3 was super high output and super fast transit but I was fortunate that I found a doc who specialized in nutrition issues in people with IBD and she put me on a very strict program. I learned quickly, because once I followed it I felt so very much better.

It is pretty much an "anti-dumping" diet. Look it up... its designed for people after gastric bypass surgery. She explained in some crazy chemical scientific manner why it would work for me.. so of course I cannot explain it back to you, but here are some of the things she made me do.

immodium - up to eight a day - 2 at a time 30minutes before each meal and two before bed
benefiber (not metamucil - benefiber is a differnet type of fiber) - one huge tablespoon with each meal
eliminate ALL sugar and any foods with sugar
tincture of opium - three times a day
nexium
do not drink when eating.
sip a true WHO electroylyte beverage all day, no gulping
elimate all hot liquids - no soup, no broth, no coffee
eat a ridiculous amount of protein.
eat 5 or 6 small meals a day rather than 3 normal meals. And include protein as the focus at each of these 5 or 6 meals.

you could have chest pains from dehydration, not absorbing, but it could also be something far more serious.. should you see a cardiologist?

Also if everything has been flying through you for awhile.. do you have a gi doc involved checked all your blood work for anemia, dehydration, etc.. When I finally found the doc I referenced above.. she ran tons of blood work. Turned out I had been "functioning" on severe dehydration and was severely anemic. I had to get nine iron infusions. crazy.. that other docs just let this stuff go. I don't know if you have a gi doc on your case or just the surgeon. But in my opinion... I don't think a surgeon checks for the whole body picture if you know what I mean.

and lastly... you clearly are not ready to go back to work. I think you need to get your yet again newly revised anatomy to be functioning better for you before you go back to work. Staying on disability a little while longer.. does not have to be permanant. Instead it lets you get things better under control so you can get on with your life and back to work.. healthy.
best wishes.
liz

Thanks Jan (Scott too) for the response...first of all, my apologies, I toyed angina like, but the like vanished, again, bloody autocorrect!! I'm having a stress test done to determine what the cause is, but during my last surgery my biological mother flew in from Vancouver to be with me. It's only the second time I've talked to her face to face (met her in 2001). She told me that no man on her side if the family has lived beyond 50. They all developed heart disease and dropped from a massive coronary before 50. Why she decided to tell me this while I was recovering from surgery I'll never know, but subtlety is not one of her better qualities! Now, granted, most of the men, from what she's told me, were raging alcoholics and drug addicts, I'm neither, and generally take pretty good care of myself, but with this new chest pain happening, it's got me really concerned I'll let you know what the test results are, probably have a holter as well. As for having no hope, I'm sorry for misleading, it's not a fact, but how I'm feeling. After being ripped apart by my surgeons for so many years, and being so sick, it's hard to maintain a positive attitude. Speaking of which, Jan, I do suffer from, have been diagnosed with, and am on medication for a deep depression and chronic anxiety disorder, I have been for the last three years now. I'm also on Atenolol to lower my BP, which was up due to my crippling anxiety. I'm not being dramatic about that, it's the truth. At one point, it was so bad, I couldn't leave the house with being in sheer terror, but for what I have no idea. It's the worst feeling opinion the world, having indescribable terror for absolutely no reason. I couldn't drive, work, go anywhere, or do anything without my heart racing, and feeling like I was going to pass out. With medication I can function with minimal symptoms, but, it definitely hasn't made dealing with everything any easier. I have accepted my ileostomy, in fact, I've come to love it, simply because I'm no longer in agony with acidic butt burn with my horrible pouchitis like I had with my old J pouch, or, I'm not leaking stool everywhere like I had was with my K pouch. Sooo....I'm just really concerned with my complete lack of energy and the chest pain. Either way, I just can't see myself returning to work out of pressure from the insurance and my employer, my health comes first. Money is tight living on LTD, but I have enough to pay my bills, I'll just have the delay the trip to El Salvador I had planned this summer, until Christmas, no big deal (it's Freddy's country, been there five time already anyways). Jan, you've given me hope, from what you've said, I'm beginning to think that my energy levels will return in time, maybe it is simply because I've had so much done in a relatively short period of time, if I can get the chest pain issue resolved, then I can relax, but as always, thank you for your wisdom, and your advice and cool head, you're my angel, always have been, always will be xo

Thanks to you too Liz, I was posting when you were responding! Thanks for the info, VERY helpful!

hey eric. pm me if you want more info. I really think that if you can get things to slow down your energy will return, and hopefully your heart problems will go away (but go to a cardiologist anyways.

quote:

I have accepted my ileostomy, in fact, I've come to love it, simply because I'm no longer in agony with acidic butt burn with my horrible pouchitis like I had with my old J pouch, or, I'm not leaking stool everywhere
like I had was with my K pouch

You do have very positive thoughts underneath it all !! Try to be positive and stay positive. I wouldn't worry about 'only' having 13 feet of small bowel - that is 4 metres, and that is actually double the length of mine !!

Hey sweetheart,
Just been surfing and happened on your post...I am so sorry that this whole situation is not getting better but worse...I do know how bad it is and how bad it gets sweetheart and you need a close loved one to help you walk your way through this all.
I started having those chest pains a couple years back...just like you I had started to clean my house when...Boom, chest pain, couldn't breath and then panic...turned out that in my case it was my galbladder that had gone balistic on me and need out, NOW. Please check it out if you still have one. My doc told me with all of the wacky dietary limitations, fasting, I.V., Ice cream etc that my galbladder had been stopped up and growing like a new-born. They pulled it out at 1kg.! Ready to burst. Make sure that they rule that one out before looking at other possibilities.
As for the exhaustion...I am with you 100%. We have had our bodies cut, chopped, emptied, stapled and abused...and it is letting us know how unhappy it is with us. Please have all of your numbers worked up with blood work, let them go detailed with your iron etc and make sure that your body is getting all that it needs.
You are going to feel that way for a while and then some...it took me 2 yrs to really go back to work full time and I still have days when I call my hubby and tell him that he needs to come pick me up because I am sitting on the floor by the subway and can't get up and move another inch.
He comes running (God bless the man, he has come a very long way)...we are paying the price for all of the surgery + the disease. You may need to start back at 2 mornings a week and work your way up...that is what I did...kept adding a 1/2 day at a time. Now I am up to 4.5days/week...it is really hard and when I am exhausted I am empty but...there you are, at least I am out and about and earning a living more or less.
Give yourself a break but you also need to push a little (very little) and give yourself goals.
Make sure that there is no underlying pathology first then work your way up.
Huge hugs and I hope that you are going to get to the bottom of this and feel better soon.

Sharon

The products josh mentioned are good. But taste DISGUSTING. I have tried ceralyte.. it is a true WHO solution. But I couldn't tolerate the taste. I now use Jianis Brothers packages of oral rehydration salts and mix them with crystal lite. This is very cheap too. That is ALL I drink (well other than the occasional wine or beer!)

Also yes.. peptamen. I was on that with that ileo #3 that I wrote about earlier. Peptamen Prebio is the one Dr. Shen put me on. Extremely expensive, but he knew the sales rep and somehow I ended up with several free cases... good ole Dr. Shen. The stuff had to be the grossest tasting thing I have ever put in my mouth. I had to drink 2-3 cans a day... in addition to 5 or 6 small meals for about 6 months.

so in summary.... what josh said just reiterates what I went through SUCCESSFULLY. So you can do it too eric.