In need of gj tube info

[Sara_Jane]

in need of gj tube info

I am not officially diagnosed with crohns but my doctor said he can't rule it out yet. I do have diabetes, chronic pancreatitis, GERD, NASH, gastroparesis, IBS, and a bout of erythema nodosum that refuses to end (almost a year now with the painful bruised lumps in my legs)

I have lost a lot of weight and have found myself in an ongoing attack/cycle of pain, vomiting/nausea and diarrhea. At my last two doctor appointments I was asked to consider a gj tube. I'm not under weight yet (I started out a little overweight) but have lost 50 lbs or so in the past 8 months and my weight loss is continuing.

My doctor said the j tube would be used for feedings so it would bypass my pancreas and let it rest and give me some relief. The G tube could be used to drain/vent my stomach during the times of bad bloat and pukies. I have vomited so much that I have tears in my esophagus and a very irritated stomach now which is causing bloody pukies.

At first I was avoiding a feeding tube at all costs...but now my current level of general miserableness and constant pain, etc. has out weighed the fear of getting a feeding tube. I called my doctor and requested to get it scheduled and haven't heard back from them about when yet.

My question is how horrible is it? Do you feel hungry? Does it hurt alot? Are you still able to go about your day as usual? Would I still be able to work with it? What kind of complications could happen? Is it hard to adjust to it?

My doctor said it would be a minimum of six months on it and I couldn't have anything by mouth except water. I can't eat much now but when I do I enjoy every bite. I'm already in a lot of pain so I don't think that part will be too bad. My job is mostly a sit down job and includes a lot of driving.

I'm just really scared and it's big decision. I want to be as prepared for this as possible. If any one could share their personal experiences with a feeding tube I'd like to hear from you. People who have been there can tell me things that doctors may not mention.

Thanks in advance for any help.

 

[scotishcanadian]

Having a g tube myself, I can say having the tube isn't bad. I had it put in this past March. It hurts a lot in the beginning after the surgery during the healing phase, but after that it doesn't really hurt. Oddly, when I get hungry it tickles a little bit around the site. I've also noticed that if I get some gas in my stomach it like hiccups. Really weird sensation, but I digress.

As far as the not eating thing, yeah, I'm not gonna lie to you, it's Hell. But, you just have to balance it out with how your health is doing and if it will help you. If you know for just about certain that this will give you some awesome relief, then do it. But DO NOT make this decision lightly. Deciding to do no food by mouth for that long [shoot, even a week] is a full time job both mentally and physically. Everything about our society is centered around food. When we're not eating, we're thinking about eating or planning what to eat. We live in a food saturated world because, well, it's natural to want to eat. BUT, if you need to do this for your health, then do it. I was pretty much without food for three months and survived. [Slightly neurotic at certain points because of the desperation, but I survived.] As far as a physical hunger goes, the drinks will take care of that, but your appetite does not go away unless you already don't have one.