Should the feeding tube be painful? (Christine or somebody?) Mine mostly wasn't, and when it did hurt badly, we determined it had to be replaced ... it had mis-seated itself inside or something. (And that pain was at an I'm-gonna-die level.) It's not comfortable, but I'm not sure painful is the word either. I know we all react differently, but that makes me nervous. Though the constipation makes sense. To this day, that's where I hurt the most when I have tummy issues, and I'm all healed up.

What kind of feeding tube does your husband have? Most patients begin with whats called a PEG tube. Thats a single tube directly into the stomach. Im asking as there is one type of tube (J/G tube) that has an inner post that goes into the intestines which may be something bothering his stomach but thats not used very often and its pretty rare for it to cause issues especially since its been ok for weeks.

Constipation should NOT cause feeding tube pain. I know constipation can make some patients very uncomfortable. If he's using the feeding tube, ask his doc if you are allowed to add things to the formula your husband's taking. Is he using bags and the pump to deliver the formula over several hours while hes relaxing in a recliner and or sleeping overnight? To me, thats the easiest way to do feedings... no bloating, stomach aches, etc. Remember your husbands medical team is available 24/7 even in the middle of the night and on weekends. Dont hesitate to call them if you see dramatic changes or your husbands condition declines dramatically and he isnt lucid. Watch for fever too. If the feeding tube site is red and has discharge around where it goes into his body that could cause a very nasty infection that requires medical attention. If you ever feel your husband is "too far gone" for you to manage his care dont be afraid to call the docs and if you think you cant transport him to the hospital an ambulance or people to help you with getting him to the ER. Malnutrition and/or dehydration can hit patients and hard!!! I felt so bad when it happened to me I thought I was positive I was starting to die. Pay attention if possible to if he is still going to the bathroom (#1) as thats a sign of dehydration too... you cant pee if you arent taking in enough fluids to do it. His constipation/feeding tube pain could be something to pay close attention to! I forget if your husband gets visiting nurse check ins or not but if he just all of a sudden got much worse he could need an ER visit. I have to remember he is not on pain meds either so its possible he is just feeling the effects of everything pretty much all at once.

Theres so many little tricks that can help make feeding tube easier and the formula easier to tolerate. Usually patients develop problems tolerating the formula due to the delivery being too fast and the formulas too thick. Almost all issues are helped by slowing down the rate of delivery and watering down the formula. Constipation can be helped with adding fiber to the formula, even if it already contains it. Check with doc before making any changes to what your husband has already been doing.

Im sorry to hear your husband is starting to feel the effects of the rads!!! The ups and downs are what many patients experience. Most patients hit the wall towards the end of rads when they begin feeling really bad. The nausea, fatigue, mouth pain all seem to hit them and they're staying in bed 15+ hours a day. This is what led me to be hospitalized for malnutrition and dehydration the first time. Everything caught up to me and I started staying in bed 20+ hours a day. I set my alarm to go off a few minutes before my kids came home from school then went and sat watching tv on the sofa so they didnt know Id been sleeping all day. Pay attention to just how much your husband is sleeping and taking in as the more a patient sleeps often will directly correspond with what hes taking in. Same with his weight... its a sure sign he is NOT doing what hes supposed to do if hes losing weight like crazy every week. Right about now is when intake becomes the most important and if the patient is playing the "make-up game" then they are heading down the wrong road. If he skimps on his daily minimum numbers (at least 2500 calories and 348-064 oz of water) this is when you will really notice it with lower energy levels and weight loss. Many patients (myself included) have thought, tomorrow I'll do better and make up what I was short today. WRONG!!!!! Tomorrow never comes as the next day they will feel even worse from skimping on intake and its even harder to take in enough. This quickly becomes a vicious cycle leading to hospitalization to get them back on schedule. Patients have also been known to be sneaky about it. I considered many things to help hide my weight loss... wearing progressively heavier clothing and shoes may work a couple times but his medical team Im sure are right on top of everything with him so they'll notice this. One patient when I first started would put rocks in their pockets before heading to their rads (and the scale). I had considered doing that myself to get the nurses off my back about my intake. They started weighing me every other day and then daily as I quickly went downhill losing weight even by the day. One important thing most patients do not consider is along with losing weight they're also losing muscle which can be almost impossible to get back. Luckily your husband is still getting hydrated every other day! This may need to be changed to daily if he continues to get worse.

Hang in there!!!! This is almost over then let the heeling begin!!!

Because he is struggling with constipation, everyone on the medical team thinks it is why his feeding tube bothers him and it has bothered him from day 1. I had noticed he was rarely going to the bathroom for several days this week. I haven't asked if the constipation is gone or not. He's sleeping most of the time and I just let him. I figure his body is trying to heal and weekends are a big break for him from treatment.

The ENT doc did tell me his stomach is full of marble sized cysts probably from years of taking prescribed meds for indigestion. They were not cancerous. But I can't figure how he could eat much from having probably 100 of those in his stomach. I saw the pictures from afar.

He does have the PEG tube. I just wonder if the above complications are an issue for not being able to keep much down. Not sure. That's why they increased IV fluids to 3 times a week though, he just can't get enough to stay down.

He has lost 30 lbs in 5 weeks. I don't know if that's good or bad. They are not concerned about it much. He started at over 300 lbs and while that doesn't matter really, he will not be skin and bones at this rate.

We do not have any nurses or anyone to check on him. We live 1 hour door to door from the cancer center. I know he calls them often about stuff and they tell him that it is going exactly as everyone expects. Of course, this is old hat to them, new to my husband so he worries.

My allergies have kicked in again. Not sure what is coming out of his body or respiration but my eyes have been matted shut the last 2 mornings. I apologized and told him I have to wear a mask around him. I can't pinpoint the allergen but it's most obvious there. With my long history of illness due to this reactions, I have to take care of myself. One of my friends commented on how sick I used to be...I thanked her for acknowledging that and saying I'm not crazy!

I notice he is up and about a bit more today probably from the radiation break and fluids yesterday. The past 2 days, I would look in and see him in the fetal position.

I have 2 real estate classes right next to his cancer center this coming week but I'm having a friend of his drive him those days so he can get home and get back into bed quickly. I just can't get away from driving to that very neighborhood in West Des Moines 5 days a week! I'm actually looking forward to listening to someone drone on and on about Law and Ethics for 2 days. Sad but I long for the days of a "normal" life again. I'm fortunate that some people on the private fb group have commented how they understand the difficulties of being a caregiver and I so appreciate that. I'm not dealing with the pain, but I am dealing with the stresses I don't even tell him about like my son whom I was close to calling me abusive for raising him in a Christian home. Really? 2 of my 3 children (1 living at home yet) have deserted me through this journey. My oldest is 31 yrs old and he has stepped up to the plate so I'm thinking it's the maturity level kicking in. Most people have no idea of how horrible all of this is for caregivers and patients. I did not buy a front row seat to this journey but I hope I take all of my learning/experiences forward to help someone else along the journey in the future.