A Year following Total Gastrectomy

My name is Glenn MacKinnon and I live in Cape Breton N.S. and am 39 years old.Last year I had a Total Gastrectomy followed by an additional surgery for a bowel leak and several post-operative infections.I am a RN by profession but don't feel I'll ever be able to work in the same capacity as pre-op.I still receive nutritional assistance but still have chronic nausea which is being treated with Zofran,I do see some improvement.My problem is regulation of B12 injections for which I take every seven days due to symptoms.I also suffer from low blood sugars regularly.I do minimal physical activity because I get so tired so quickly.I can do some yoga but again,get tired very quickly.I feel very depressed mourning the life I once had!!!!I know things will never be the same but has anyone ever feel like this?Some people may think I'm making this up but they have no idea.My caloric intake remains around 1000cal/day.I just want to talk to someone who shares my experiences.I still have about another year and a half on disability before reassessment.My doctor feels a more sedentary job title which I do agree but not for quite a while yet.Is this normal to still be getting so tired from minimal activity not to mention other important aspects of normal living.I don't feel my quality of life is great but I do remain positive.Would someone share their experiences with me to help me cope with my limitations.I'm only 39 but feel like a senior because of my regular rest periods and lack of many everyday experiences.Each day is different but I just can't help but feel useless!!!Did anyone ever not resume their regular job due to weakness and low caloric intake.Any life experiences would be greatly appreciated.Some people have said I may never be able to return to work.Please if anyone can voice their experiences would be great.

By katbrow
Posted September 24, 2009 at 8:57 am
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Hello Glenn:

I feel your pain. I am older but have had gp for approximately ten years, undiagnosed. Now I am gravitationally dependent for sustenance to go through my system. I don't know if I even get 1000 calories a day anymore. I will have to measure it one day and see what I am getting. I too am tired as I am sure the rest of those with gp are. I have learned to do what I can and not fret about what is left. There is always another day. I have broken my chores down into doable things and divided them up into days instead of hours. I do still work though I am exhausted at the end of the day and usually have a nap or just lie on the couch and read. My husband is very supportive of me, which I think is one of the most important things we need in our lives. I do medical transcription. Since you are a nurse, it may be easy for you to cross train into that and find a position on line that will take a newby in the field and train them in their procedures. I enjoy my work and hope to continue to do it at least part time after I retire, I am 64. If you want to look into transcription as an option in your life go to AHDI.com. They will help you find an online school to train through and voc rehab would probably pay for it.

I am sorry you are having such a rough time at such a young age, but I learned when I was 30 and my stomach hemorrhaged that some things are not that important. There is always tomorrow to accomplish that task in and nothing will keep the sun from rising on each day.

Kat

By gdmk
Posted September 24, 2009 at 10:54 am
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Thanks Kat,your very sweet,it means a great deal to hear from others.I guess my expectations of myself are too high because before this all started in 2007 there was nothing I would do or try.When I'm ready to return to work they will place me in a position I can handle but my 20 years of bedside nursing may be over.Better days ahead though,I'm staying positive.

Thanks Again
Glenn

By Einstein
Posted September 24, 2009 at 11:25 am
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Glenn,

I am 19 and in nursing school (trying anyway)

I have gastroparesis and CIP as well as some unkown immune dysfunction. I perfectly understand what you mean by being tired. Just getting out of bed and getting going in the morning is enought to make me ready to crawl back in bed. I can't do normal activites either, even sitting through class is a major hurdle. Can't go out with friends, can't stay up paste 8, can't sleep past 8, ( have to get started on eating ) etc. IT SUCKS! I am getting ready to have G-J tubes put in so hopefully this will help with energy and also with quality of life, allow me to have more freedom. I definitaly feel 90 rather than 19. Have spinal fractures for osteoperosis and everything.

Hope things work out for you.

Einstein

By prayer
Posted September 24, 2009 at 12:18 pm
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Glenn
What is a gastrectomy? Also, of course your tired, you had major surgery. The tiredness can last for a good year or more. I too have issues and dont eat alot
since my surgeries but I work a full time job now. I also have to take B12 shots monthly. YOU ARE NOT USELESS AND YOU WILL GET STRONGER. It is normal to feel the way you do but remember it is temporary. It will pass and you will get better everyday. Im living proof. Let me know how you are doing

By ablevac
Posted September 24, 2009 at 1:16 pm
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1991 was the day i had a total removal note total not part. i have to do b-12 and folic acid for every. i still have trouble eating chicken. it toke 2 year to eat normal and what is nice i do not threw up but i can not know when i over eat. i went to work full time 1.5 years after and made my own company and had a store for 16 years.

By gdmk
Posted September 24, 2009 at 3:04 pm
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Thanks so much,wow 19!!!!!Our road ahead is going to be long my friend.I just went out for a little drive and went to Walmart for about 30 minutes now I'm totally exhausted,I'm only 39 not 139.lol.Hope to talk again.

Glenn
PS,Good luck with your studies!!!!

By gdmk
Posted September 24, 2009 at 3:08 pm
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Gastrectomy is total removal of the stomach,since then my life has changed so so much!!!!What I use to take for granted!!!!!It's been over a year and I still get tired very easily.I'm an RN but don't think I'll be able to resume my old job,I did hands on for 18 years!!!!I think that's something of the past.Thanks for your reply.

Glenn

By NancyL
Posted September 24, 2009 at 3:23 pm
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HI Glen,
Welcome to the group! You will find lots of support from all the wonderful people here who know what is like to have your world turned upside down by GI issues. I had major surgery almost 3 years ago now. And I did not begin to start feeling like myself until this year. I still do not have the energy or drive that once was such a part of me. But the overwelming exhaustion has subsided most of the time. You have a fantastic attitude and that is the toughest part of having your life change due to illness. Before I got sick I felt young for my age. Now I sometimes envie people in thier seventies and eighties because they can do so much more than I. Don't expect that you are done healing from the surgery. You will continue to get better for at least the next year so don't lose heart. There are many different types of jobs that do not require all the energy that nursing does. Perhaps a whole new world will open up to you. I have a friend that works out of her house taking orders for QVC and reservations for car rental companies. She can log onto her computer anytime day or night and work when she feels like it. Just one example. I know it is not the same as when you have worked and trained in a profession and are not able to use that education and experience.
Nancy

By gdmk
Posted September 24, 2009 at 3:33 pm
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Thanks Nancy,really appreciate that!!!!!I will continue in the nursing profession just not hands on,my union
says they have to find a job that matches my limitations.I don't plan on going back anytime soon.Thanks again for your reply.

Glenn

By LizAA
Posted September 24, 2009 at 3:57 pm
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Glenn,
I along with everyone else am there with you-no I haven't had a gastrectomy, but the gastroparesis leaves me with limited caloric intake. I've been a pediatric nurse for 13 years and went to a part-time nurse with a wellness company reading lab reports and calling participants with their results. It's very hard-I loved pediatrics and the place where I worked!!! I also have a 4 year old hyperactive autistic son, and a husband who is deploying for the 2nd time to Iraq. So there are days where I am overwhelmed and crying wondering how I can do this. Then I look up to heaven and tell God, everyday take my hand and get me through this day. I've made it here so far, trusting Him.
I guess that's my best advice to all of us here!!
Good luck Glenn, you and all of you here at Oley are in my daily prayers!
Liz

By Clementine2
Posted October 24, 2009 at 5:03 am
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Hi people,
I had a complete gastrectomy a year ago and am doing very well - finally. I can't face normal meals and have lost a lot of weight but I think I am finally on top of that problem now. My dietitian would be appalled but I've found that regular snacking on fudge and toffee, interspersed with well-chewed nuts, banana, and very small portions of soft or liquid foods (scrambled eggs, soup, etc) keeps my energy levels steady and most days I feel almost like the old me again. I'm actually able to exercise regularly again as well as working full time as a writer and looking after my two children. If I do get guilty and cut out my regular sugary snacks (I have them 6 or 8 times a day) I get weak and watery very fast. I've decided that trying to eat ordinary big meals is not worth the effort as I get exhausted for hours afterwards as my body struggles to a) swallow the food (I have narrowing due to scarring at the top of the oespophagus) and b) process it. My unusual diet is not an ideal solution and won't work for everybody in our position. It depends if you are able to tolerate sugary things. I won't say it's helped me gain weight but I haven't lost any more in the 4-6 months I've been doing this weird eating routine and I'm not malnourished. Of course it sets a very bad example to the children but it's keeping me functioning and that's the most important thing right now. It think it helps that sweets simply dissolve in the mouth and provide a quick fix, while needing little digestion! I should point out that I also have B12 shots every 4 weeks.

By Gailete
Posted October 24, 2009 at 10:05 am
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Glenn, As you know even though hospitals shove you out within days (which makes everyone seem to think that means they are better) it takes a year to 18 months to truly recover from major life altering surgeries. Yours was a significant one that not only to you have to get over the surgical implications but the nutritional ones. Without decent nutrition it is hard to gain strength back. I have arthritis and GP and as my arthritis got worse, I kept looking for nursing jobs that wouldn't bother my knees as much. My last nursing job was in utilization review (although I loved hands on nursing as you do). One day I was so sick and in so much pain I had to go home. I never have returned to the office. However I have managed to keep myself busy in those minutes between resting and napping by starting a small on line business that generally cheers me up immensly and give me contact with the outside world.

Your world will never be the same again, it will be different and maybe in some ways better. I learned to not identify myself as a nurse. Who I am is ME! Once you can get past the "I'm a nurse I have to do nursing", you can see other venues of things to do. Thank God for the internet as it provides outlets and communication with many people that otherwise wouldn't be available to us if this was happening 30 years ago.

I wish you well as you continue healing. You are not alone.

By gdmk
Posted October 26, 2009 at 9:57 am
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Thank you so much for the input.My most recent trip to the Dr.s office was very upsetting because he told me you are what you are!!!!By this he meant I'll never have the strength to return to a physical nursing job rather a sitting position within the hospital,when the time comes to return,if I ever do return!!I still get very depressed because I feel like I'm in mourning for the person who once was very productive.I also explained that I was having memory issues which is new as of the past few months.I'm now taking my B12 shot every Tuesday because symptoms start at 7 days.I still get so exhausted doing minor duties around the house.When I'm out walking a short while,my blood sugar seems to drop.I still never feel hunger and still get up every few hours during the night to eat.I'm so glad their are people to speak to here because little is known about living post gastrectomy here in Cape Breton.I'm going to see a social worker for some moral support and to talk about all my life changes because I can't say the word disability.My Dr. thinks I need to realize,life will never be the same again and my working days as an RN may be over.I'm on LTD right now but I try so hard everyday.The chronic nausea is a real problem too,I take Zofran Tid or Gravol.I get so upset when some people say WHY DON'T YOU JUST EAT!!!!!Eating is not a comfortable task either.I never expected the post living would ever be like this but I have good days and bad.I for the most part stay positive but I'm human!!If only one of these people could walk a mile in our shoes!!!!!Thanks for the reply,I really,really appreciate it!!!!!Glenn

By Gailete
Posted October 26, 2009 at 11:53 am
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Glenn, I know just how you feel in regards to your job. I went to nursing school in my thirties, was close to top of my class, worked as charge nurse and even relief house supervisor at times. Then the arthritis started claiming my knees and I kept changing jobs to accomodate them, and then one day I could no longer work at all. Financially it was horrific and at times it still is. I've just gone through a really rough month as my Gastro paresis diagnosis was about 2 months ago and one month ago I started crying every time I tried to talk (bad side effect of reglan). Thank God for my hubby who helped me figure out what was causing that depression. I'm doing better today somewhat although feel completely overwhelmed seeing the stack of dishes that need done and a floor to be swept--this from a person who at times worked a 60 week and still kept up with kids, laundry and the house! It is very hard to accept the new reality of our life. Watching the Shawshank Redemption helped me with the lines "get busy living or get busy dying". Okay, you can't do bedside nursing anymore, start your brain going on what you CAN do still. Even if it isn't something job related, what can you do? Then start doing it. Mourn if you need to for what you have lost, but keep looking at what you can do and pat yourself on the back for EVERYTHING you accomplish!!! You mentioned taking a walk even though it tired you. I would love to take a walk, but my titanium knees are hurting too bad now to go further than the mailbox, I wish I could walk. This weekend has been so bad, hubby offered to pull my w/c out of storage but I refuse to give in as I am scared I'd never get back out of it, so I hobble around the house trying to do what I can. Little by little you will develope a new life that maybe isn't what you planned, but in some ways can be better. I wish you peace.

By ablevac
Posted November 5, 2009 at 12:39 pm
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make sure you have b-12 and folic acid blood test when you see dr. you sound very low you can ask me as i got a new job 6 months after op they tought i ran .

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