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So not sure how to start a new thread my brain's dead lately. Do any of you have a "Go" bag. It's something we did in the military. Bugout bag was another term. I've started one for the hospital stays. Just curious so I don't have to think and I have enough jamies and clothes to keep a few sets in a backpack. Just wondering.
 

cmack

Moderator
Staff member
Hi Jane,

I never worried too much about what I took because it was all emergency surgery, besides two. I found that 2 or 3 sets of cheap earphones were great because I would fall asleep and ruin a pair all the time. I also wished I would have had some kind of water ready, anti slip sandal for the questionable floors and showers. I needed a few bucks to buy things in the hospital store, like magazines and newspapers and such. Also I used a black sock to put over my eyes so I could sleep with the lights on or during the day. Books are good too. I always needed earplugs too. It sounds like you will have your own room but sometimes people are so loud they wake you up at night. There is more I just can't think of it at all. I'll try to help you out as much as possible.
 
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I take a nightshirt my doggie(stuffed) phone I pad charger diaperssomething to were home and meds hidden in case they mess them up.
 

cmack

Moderator
Staff member
Hi Julie,

What a terrible thing that we became experts at having surgeries. I wish we would have never had to go down that road. Such is life, at least we survived. I'm here for support if you need it.
 
Thank you so much cmack. Have you heard of a small intestine enteroscopy? They found a stricture but can't quite figure out its exact location to remove it and the want to tattoo it? They say other than the capsule which will get stuck. They did the patency one and it was stuck for 48 ish hours. It's the only way to see the inside of the small intestine with all of its twists and turns. They said I will need general anesetheia and it will take 2hoirs. Doesn't sound pleasant did u know about this one? Or does anyone? ThanksπŸ’œJulie
 
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I have been authorized for the medicine Entyvio but not the hospital where I will be receiving it. The hospital has to build a profile on me and it will probably be next week before I get Entyvio. I was told to give myself Humira today.
 

cmack

Moderator
Staff member
Hi Julie,

I have heard of the pill cam procedure and the patency test. My entire bowel was mapped using an MRI. I'm soon due for another image. I will be discussing that with my GP at the next meeting. I have never had small intestine enteroscopy. Most of my issues aren't in the top end.

I hope you are doing OK buddy.

Best wishes,

cmack
 
Wasn't feeling well this afternoon so went for an X-ray guess what?blockage! And dehydrated will talk to dr tomorrow about what we are going to do if I make it that long
 
Wasn't feeling well this afternoon so went for an X-ray guess what?blockage! And dehydrated will talk to dr tomorrow about what we are going to do if I make it that long
Just went through this myself I'm sorry, sending prayers. I went really liquid at hospital. The envivio has been helping with inflammation so hoping with this trend once I have surgery on next Friday.
 
Thanks all I finally got the blockage fixed last night at the hospital now back to water! Pt! 2surgeries in Tampa then entivio and hopefully life will get better! JANE hope same for you. Sending thoughts and prayers. πŸ’œJulie
 


Wow why can't I insert picture with the URL ok how did you do it? It's so frustrating being able to insert a picture on this site....I know you have to be smarter than the URL.
 
Hello all, I'm new to the forum.
Just venting a bit!
The anemia and fatigue this disease have caused me is making me miserable. Going on for 3 years now. Stay home most of the time in front computer because too drained for mostly anything. Exercise? Cant do that with resting heart rate of 100. Easy to lose motivation for life and try to take the easy way out(suicide),
 
Hello all, I'm new to the forum.
Just venting a bit!
The anemia and fatigue this disease have caused me is making me miserable. Going on for 3 years now. Stay home most of the time in front computer because too drained for mostly anything. Exercise? Cant do that with resting heart rate of 100. Easy to lose motivation for life and try to take the easy way out(suicide),
Welcome,

Most of us have gone down that dark alley before when we just get so fed up but think of your family. When every I glance down that alley I think of them and how much it would hurt them. Ask your doctor for pain management or group therapy, we have a pain group at our VA or just therapy it's ok to seek that with all that we go through.

I found water walking was great for me and my fitbit gets me at least walking so I can challenge my daughters with their count. I also have a helper that gets me out of the house at least 2 times a week. Even going to the library a change of pace helps. You can message me anytime. My family has gone through the pain of suicide with a family member, it is never forgotten. Seriously message me anytime. Thoughts and prayers.
 

cmack

Moderator
Staff member
Hi Glockola,

welcome. I understand the symptoms you are having. I was very weak for the better part of a decade. I got a new doctor and he helped me get on the right track. Things do get better once you find the right balance of meds and diet. I hope you choose to stick around. I have had people I know give up and kill themselves. I was angry with them for choosing that way out. Please don't be one of them. I know it is hard but just think of how many people who care about you who would be devastated by such a thing. Feel free to come here for support any time you feel the need. We all are very understanding folks around here. You can pm me if you like as well.


Welcome again, I look forward to getting to know you,

cmack
 
Hi glockola
Welcome. Please I've been there and go there a lot but my therapist and these wonderful people help me. Feel free to pm me if you like. I can always talk. 😊
 
Thank you all for the kind words.

Was at my local GP today. As I have to wait a month before I can meet with my GI doctor.

Was complaining about how my fatigue is making me housebound. Causing a lot of mental agony. The bastard would not prescribe me anything for the anxiety, insomnia or the fatigue.

Even during so called "remission" some of us are still never going to absorb nutrients normally and therefore remain tired. Maybe some ignorant doctors just look at labs, and think it must all be in our heads? I guess the lingering diarrhoea have nothing to do with it.

Some physicians way too stuck in their own heads. Don't move to Sweden if u suffer from chronic disease. Communism doesn't seem to teach people to use their own brain.
 
I wish I was living in the US. I can see a therapist every four months, and even then, they just pat you on the shoulder and hand you some Prozac. See u again next autumn.
 
Have anyone here ever tried modafinil? Helps with mental alertness and also none addictive. I would love to be able to work at least part time.
 
Sorry not that one. Tramadol helps with my pain and energy some and Trazodone helps me sleep. Hydroxyzine helps with my anxiety a lot.
 
Hi Jane, tramadol is really great for pain and energy. I had it prescribed while living abroad.

Too bad they wont give anything for me in Sweden. Not wishing for miracles, just a decent life on the weekends.

I think most of you are US citizens. Living in Sweden it is like being traped in one single confederate state.

We have only the government to seek help.
 
Hi Jane, tramadol is really great for pain and energy. I had it prescribed while living abroad.

Too bad they wont give anything for me in Sweden. Not wishing for miracles, just a decent life on the weekends.

I think most of you are US citizens. Living in Sweden it is like being traped in one single confederate state.

We have only the government to seek help.
Sending support
 
Trazodone is great too. A tricyclic antidepressant. Helps for sleep. I got that one too, take before sleep. Some physician prescribed while I was living abroad.

Honestly guys/girls, I think this disease is manageable although miserable.

I think most members come from the US.
Some states are probably backwards just as in here. At least you have something to choose between if feeling beyond hope.
 
I'm sorry if it wasn't illegal I'd mail you mine. Any medical places longer away and then just work with having your meds mailed that's what I do as my VA Hospital is hours away from where I live.....guess I understand why my great grandfather left Sweden now. Sorry.
 
Yes, we could bash sweden all day long couldn't we? Socialists ass holes =).. it is illegal to receive narcotics from the US, that's true. Thank you for the support and listening.
My wish is to survive this ailment, and just keep on living decently and hopefully with my family intact.
Thankful just for having this forum where we can listen to each other.
 
I'm going to Tampa usfhealth for new procedures with my specialists specialist Pt vey I've been so sick. Hope they do the resection soon if I have to. I'm tired of being in bed. Love to yaall! Feel wellπŸ’œ
 
Well I passed out from the pain a bit better but tired today. I wanna try to make it till wed when I go to Tampa for my procedures and see super specialist and surgery or hospitalization. Pray I make it.. thank you so much for caring I wouldn't have made it without you guys! Love u allπŸ’œOh a little tmi I had diarrhea this am so I know it's not a blockageπŸ’œJ
 
Please don't be alone when you're so sick ! I really am scared for you to wait till Wednesday. That is too long ! Praying for you ! XX
 
I don't know how. I'm just sad. I can't wait till they help me. I hope I fall asleep tonight. Thank you so much for caring wish u were closerπŸ’œJ
 
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