Life worth living with severe GP?

• By Kristin_F
• Posted February 8, 2009 at 8:29 pm
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I completely understand how you feel, but that is NOT the case!!!! I am currently in counseling for the depression that has come from my gastroparesis, and I am currently take antidepressents. My husband tells me everyday that he would rather have to help me do things sometimes, and occasionally have to change or alter plans, or even not plan ahead then not have me around. I know that hearing those things don't always make you feel better, but think of the good days. Your family loves you and doesn't want to lose you NO MATTER what small changes they have to make to help you. If it were one of your family members would you think of them as a burden and wish them gone?? I'm sure you wouldn't!!! Please seek counseling if you are feeling like throwing in the towel. Do not let this disease get the best of you. I have a feeding tube, and am learning how to live with it. You can do it, trust me. Most people on here are asking ques. because they need answers and that often makes the disease seem more scary then it really is. Some days are hard I won't lie, but not every day is bad.

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• By carebear422001
• Posted February 9, 2009 at 4:21 am
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Hi LizAA, Living with severe gastroparesis is bad but like Kristin F said it is manageable. I live with a feeding tube also and I have the nausea and vomitting and pain daily but I know that my family wouldn't won't to live without me even if they have to make some adjustments. I had a daughter that was born with a birth defect called spina bifida and she was very sick, but I got to be a mother to an angel yet she had to have care 24/7 she wasn't a burden she was a blessing and I'm betting that you are a blessing to your family also. The gastroparesis does limit some people and I'm one of them and of course I get depressed too and I'm on anti-depressants too, I've seen a counsellor too when I was able to make it to the appointments but now I just take the medications and use the coping techniques that I learned when I was going to the therapist. I not only have a feeding tube, I have an illieostomy and quite a few other health problems to go along with everything else but I wouldn't wan't to put my family through losing me and I'm sure that you don't want to put yours through it either. If you would like to chat you can e-mail me at carebear422001@yahoo.com
Living with gastroparesis is manageable my parents even had to build a kitchen outside to cook so that I couldn't smell the food because smelling things makes me very sick, as a matter of fact I had a computer tech guy come to my house the other day to fix my dad's computer and I also had a doctor's appointment the guy had so much aftershave on that I got violently sick and had to cancel my doctor's appointment. I hope you take Kristin's advice and seek some counselling and maybe get an anti-depressant to help you with the depression.You take care

Tina aka carebear422001

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• By Andrea1
• Posted February 9, 2009 at 9:32 am
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I read your post and just wanted to let you know that I am going to pray for your situation. And with Jesus Christ there is hope, if you don't already know Him. Call upon God - it's that simple.

Andrea

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• By LizAA
• Posted February 9, 2009 at 6:51 pm
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I don't know what it's like yet to have full blown gastroparesis like you both do, and don't have a feeding tube yet (although it probably isn't far away since the amount I can eat is shrinking, and I'm tired often.) But from what I gather from reading people's lives, you spend your days laying in bed, retching every few minutes, in unbearable pain, no able to leave your home, or do housework or hobbies. Is this how it is? Can you drive? If not can you ride in a car? Can you cook, clean, and take care of your children? (I have a 3 year old, and my husband works late) Can this be done with severe GP? I spoke to a lady with severe GP and she said she vomited constantly all day and night , passing out, and on TPN for 3 straight years before she got the pacemaker. How does a person even stay alive like that?

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• By Novagrad
• Posted February 9, 2009 at 7:18 pm
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LizAA:

Everyone is different and everyone handles their illness differently. Things happen progressively, if that makes any sense. I spent my 20s working hard in graduate school and obtaining two master's degrees. Had the job of my dreams and was doing very, very well. I did have to give it up. For now, at least. It was hard. But I know that my health is the most important thing right now. I survive on assisted nutrition (was on a feeding tube but now am on TPN) and there are some good days and some bad days. Life may not bee the same or be exactly what you want it to be, but your family loves you and they will support and protect you. You will find a way to care for your child and yourself. It just might be different than the way you were doing it before. Just know that right now your health is what is most important. Get that taken care of. Once you have proper nutrition and anti-nausea meds, you will be able to handle life a little easier. I'm on chronic pain meds and don't get around well because of chronic spine problems that are a result of malnutrition. I ignored a lot of symptoms early on so that's why things got so bad with me. It sounds like you got this taken care of early so hopefully you won't have as many chronic problems. We are all here to help you and encourage you! Hang in there!

Mimi

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• By Novagrad
• Posted February 9, 2009 at 7:20 pm
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LizAA:

I just found out that we are around the same age and in the same profession. Hang in there!

Mimi

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• By Kristin_F
• Posted February 9, 2009 at 10:44 pm
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By no means do I spend all day every day wretching!! That has been one of the biggest benefits of the feeding tube! With the feeding tube I don't have to eat, and when there is nothing in my stomach I don't throw up very much. Because my bowels are slow I've had my tube feedings back up, but my Drs. had me disconnect my tube for a few days, and within 24 hrs. of disconnecting it the bloating went down and the naseau subsided. Thankfully smells don't make me sick. My Drs. want me to continue to take food in orally, so I make sure that the days I eat I can just stay home and know I may not feel good. Even with all my medical problems I can still drive. I have to be more careful then other people with gastroparesis because I also have a sleep disorder related to narcalepsy, and type 1 diabetes, but just the gastroparesis alone does not prevent me from driving. I always carry naseau medicine with me, and if I am out the first sign of naseau I take my medicine. I learned you don't wait. If I take it when I first start to feel lousy it usually works really well. Yes, you can still have a life, you just have to learn what will work best for you. Today I felt really good, and I needed to talk to my niece about her diabetes that she has decided not to take care of. So I went and picked her up, and brought her home, and we took my dogs for a short walk outside while we talked. I had a couple of rough wks recently with my diabetes, and my tube, and depression, so last weekend I told my husband we needed to get away. So Sunday we drove from Rockford to Chicago and spent the day shopping. I knew we were taking a trip, so I just planned not to take anything by mouth. If I needed to treat low blood sugar I put sugared pop through my tube. We had a really good day!
Yes, some of my hobbies have had to change. I no longer go running around a soccer field playing hard core soccer with the boys, but I haven't done that since the GP started. That isn't solely because I got a tube. And no I don't plan to do any wrestling any time soon now that I got my tube. But I can still hang out with my friends, and go shopping, and read, and cross stitch, and I still play with and watch movies with my nephews who my in-laws babysit 5 days a week. My husband and I even still have sex:) A very good life is still possible with GP! I can't work right now because the GP has made my diabetes a full time job to control. I can do housework, it just sometimes takes longer then it did before. If my husband is home I have him do anything that requires lifting for me, because lifting makes my tube hurt, BUT I CAN DO IT, it just helps if he does it when he's here. Everyone is different, but from my opinion you will be able to maintain a fairly normal life. You may not be able to hold a job, so that you can have enough energy to take care of your home responsibilities, or you may feel great, and feel like a new person and be able to do it all. So many people with GP have many other health problems as well that make it difficult to maintain a normal life. For example diabetes, MS, etc. If my only problem were my GP with a feeding tube, I would be able to return to work, and still have a life at home. I would have to have time off work when I had issues with my tube, but things would be soooo much easier if that were my only problem!! You can be a good wife and mother with your problems, it will just take a little time to adjust. When I first signed on here I felt like my life had ended. I felt like I was the only one with my problem, and was severly depressed. Now that I see that other people understand things have been a lot easier! I still have my down days, but my counseling helps, and my counselor has given me suggestions to put my thoughts in order, which some of those things have become new hobbies. My last gastric emptying study showed 100% retention at 5 hrs. In other words none of my food even began to pass through my stomach til after 5 hrs., and my first test showed the same thing. At the 6 hr. mark small amts of food began to appear in the small intestine, so needless to say my stomach is pitafully slow, but that won't stop me!

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• By Kristin_F
• Posted February 9, 2009 at 11:00 pm
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I wanted to add two other things. One is I just read your profile, and am glad to hear you have faith. My faith has really helped me through. I finally returned to church last Sunday. And second I wanted to tell you that the problems I have with leaving my house right now are more psychological then physical. I am worried about what people think of me when they see me, and about running into people I know and having to answer ques. I have posted that I don't go out a lot, and I don't right now unless my husband is with me, because I feel more secure when I am with him. But it's not that I can't physically go out, it's just I'm having difficulty emotionally. My husband is my support beam right now with everything, and I don't know what I'd do without him. Ok I've blabbed way too much, but I hope it helps

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• By chewy1
• Posted February 10, 2009 at 2:33 am
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LizAA,
I was reading all the other responses and although I don't really have much to add I did want to chime in and say that I agree with them. You can definitely still have a life with GP...
I know you are concerned that your symptoms are going to continue to worsen until you are forced to have feeding tubes and such, but that may not be the case. I developed GP in late 1999, along with it I have developed several other health problems too such as fibromyalgia, severe GERD, diabetes,pelvic floor dysfunction, increase in migraines, among a few other issues. I have also begun switching from delayed emptying to rapid dumping which causes the same nausea, vomiting and pain. But, dispite all this I have not reached a point where feeding tubes or anything of that nature has become an issue.
I do have flares which can last several weeks, which do usually require frequent trips to the doctor's office or ER for IV fluids for dehydration and sometimes a hospital stay. During those flares, my depression really soars and I begin to wonder if I will ever get back to being able to function again. My latest flare has lastest longer than most and started in late Nov. and is just today shown signs of easing up.
When I'm having a flare, I do spend more time in bed, but even then it's not constant vomiting. You eventually learn when you are having a flare, what your stomach can and can't handle in the way of food or liquids...you learn when is the best time for you to do the things you need to do too. I know for me that if I have something I need to get done, that mornings are the best time for me because by afternoon, my energy level is down. I have learned that if I need to drive somewhere that I should hold off on some of my medications until I get home or if I'm going to be out I may choose not to eat before I go unless it's a very light snack and something I tolerate well.
I still go out to eat with friends. They know my situation and are not insulted if I don't eat, and understand that their are some restaurants that just don't offer something I can eat.
I am good at scoping out all the nearest restrooms when I go somewhere too so if I have an emergency I can get their quick. Thankfully, that hasn't been too much of a problem.
Even though I know I'm not dealing with as severe of symptoms as some people, having been in this latest flare that has lastest so long, I have some idea of how awful it is...I haven't had solid food in so long now that I'm actually scared about trying to eat again. I have lost 35 lbs during this flare and have had to have most of my meds compounded into suppositories, topicals and a few nasty liquids. But, it's doable. And, I still enjoy life...the computer and this website has helped me tremendously. But, I still have family and friends who call and come see me, I still venture out to Wal-Mart some (not as much as when I'm feeling better but it's nice just to be shopping), I read, watch t.v., and I do crafts when I am not sleepy from my meds.
You do make changes in how you do things, but I think some of the stories you read that have scared you so bad are the "VERY EXTREME". Having been a member of this group for over a year now, I have read so many stories of people who do have feeding tubes, pacemakers, drain tubes, etc. that do still have the really bad days, that are on many medications, get infections easily...but they are still functioning! Some are going to school getting their college degrees, working, raising their kids and grandkids, and doing a good job of it. It's a challenge but they are amazingly determined and are refusing to give into the fear and frustration.
I'm not really sure if any of this makes sense or not, but I just hate to think of how scared you are and want you to know, that it doesn't have to destroy your life. There will be days you think it is a losing battle...but hang in there...and in the meantime when you feel overwhelmed use this site and all of your new friends on it to vent too and get support from....
Judy

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• By JenD
• Posted February 10, 2009 at 11:25 am
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Hi Liz,

I just wanted to say please don't live in fear. Live in the moment and enjoy today. I have severe GP. I have nausea most of the time, I'm fatigued, I have migraines, neuropathy, fibromyalgia, generalized dystonia (I use a wheelchair to get around) and I have a g-tube for venting, j-tube for meds and am TPN-dependent. I no longer take much of anything by mouth.That said, I am a wife and Mommy to a three year old who is the joy of my life and I am a full time graduate student working on a double major PhD in Neuroscience and Psychology. It is going to take me longer than my peers to graduate, but I just take one day at a time and go in to work on my dissertation when I'm feeling well enough. I enjoy life, have friends, work on my dissertation and go to the park with my son and husband. I also have a retired service dog who has helped me through my undergraduate and Masters degrees and still works hard and helps keep me emotionally grounded. Although every day is hard and I constantly have challenges, I enjoy life despite my illnesses and am determined to find success in spite of GP and disability.

Life with GP is difficult, but it is most certainly worth living. Hang in there and know that you can get through the challenges of GP no matter how hard it gets. You are not alone.

Peace, Jen
http://www.caringbridge.org/visit/jenelle

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• By booters
• Posted February 10, 2009 at 12:31 pm
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Just wanted to add that if you can gain control of your nausea with the right meds life can be very normal. One has to be proactive with this and if you aren't feeling great I understand that you might not have the oomph right now to press your doctors for different solutions. I wish I had been more persistent earlier (two years ago) because since I have found meds that work for me (domperidon for motility, ondansetron for nausea) life looks pretty normal. I initially thought that because the first couple of meds I tried were so unpleasant that I had no options. I also understand that everyones body is different, and the severity of GP differs. I am also a Christian, have seen wonderful answers to prayer and I will pray for you, Bonnie

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• By LizAA
• Posted February 10, 2009 at 12:37 pm
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Thank you, you are all very encouraging. What about being in the hospital all the time? I read that between the problems you experience with the feeding tubes/TPN and "flare ups", that you spend half your life in the hospital. This is all so overwhelming. I'm sure it is for everyone when they find out they have this disease and may experience all of this.

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• By JenD
• Posted February 10, 2009 at 12:53 pm
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Hi Liz,

Last year I was hospitalized three times. Only once for GP issues, the other two times were for dystonic attacks. I am fairly stable as long as I get my TPN, take my meds and sleep when I need it. I was in the hospital a lot more often before I was on TPN because I was malnourished, dehydrated and couldn't function. If you can get your nutrition optimized (whether it be through tube feeding or TPN) you can be healthy and live a healthy life.

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• By LizAA
• Posted February 10, 2009 at 7:15 pm
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I am on Domperidone right now, and it has helped me go from living on chicken broth and crackers to soft foods. I still feel bloated though with small meals. Do you experience this? I'd eat more, but I'm afraid I might slow down my stomach.

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• By Gajudy
• Posted February 10, 2009 at 8:29 pm
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The people on this site are wonderful. I'm bursting with pride just to be a part of this 'family'. I know how scared you are. You really do have many more happy times ahead. I know I'm one of the very lucky ones who don't have a severe case, & I thank God for that. But I know from reading on here that most of the people have happy, fufilled lives in spite of it. Maybe even because of it, because it causes them to go deep into themselves to bring out that inner strength. Please don't give up.
Gajudy

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• By booters
• Posted February 10, 2009 at 8:39 pm
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Saw Dr. Lacey in New Hampshire some weeks back and he doubled the Domperidon dose my local GI doc had put me on. I now take 20 mg 4 times a day (3 times before eating and once before bed). I have had a few times where I have had the bloating and needed to take anti-gas meds but so far on this dosage no nausea. I have been eating more, including some vegetables and fruits and one night I had a small hamburger. I still limit my fats but I feel healthier and my anemia is much better - my blood tests are much better. I hope this helps, Bonnie

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• By mardog
• Posted February 11, 2009 at 1:12 am
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today i just wanted to come home and pull the plug, so to speak.
I rely on the feeding tube and often think of injecting it full of morphine.
This mysery would be over.
No one know how bad it is but it shakes me to my very core.
I am active-I go to work,I goto my charity things, I meet friends for lunch, but I am just pretending. Having this illness is neverending.
I am 50 years old and have lived years with Chrohns.I now have an illostomy and rely on a feeding tube for nutrition. I throw up most days.I can't take it anymore!
What is the point of keeping me alive.
50 years ago, I would be dead.
I just feel done.
I need to be pain free and even with all the drugs they give me, I can't find that state anymore.
Please, don;t everyone get freaked out, because I am sure you all have days like this and I just need to say it.
How I yearn for release from all this. I want to set my husband free from all this.

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• By LizAA
• Posted February 11, 2009 at 7:33 am
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You are definitely in my prayers. It's amazing that you manage to have a life-work, visiting friends, charity, in spite of the problems you have. But I know it must be tough. God, please give us the grace and relief we need if you keep us on this earth. Please give this beautiful lady relief from her sufferings.

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• By lindalee
• Posted February 11, 2009 at 9:08 am
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I have severe gastroparesis too and it is moving down into my small intestine. I understand too what you are saying, but since I quit work my days are so much better. The nausea is more controllable and the stress of not working has helped my nausea too.

I have been on TPN and j tube feeds. I also have a PEG tube in my stomach to drain and decompress and that is my lifesaver. If I did not have that I don't know what I would do. It makes the nausea more controllable.

When I get depressed I just look at my grandbabies and I want to be around for them and to see them grow up.

Just hang in there and take one day at a time. Now I have more good days then bad. The nausea can be controlled too with meds given around the clock. At tone time I was on Zofran, Tigan and Compazine.

Good luck and just hang in there.

Linda

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• By LizAA
• Posted February 11, 2009 at 9:27 am
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Don't all these nausea medications cause drowsiness? How do you function and continue to do your daily activities?

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