oldcrohns

[oldcrohns]

So it’s been while since I’ve posted. It’s been a difficult few months. I have had several flares resulting in two hospital stays. During the last my GI wants me to have a second colostomy. I had one 20 years ago. I know this have changed but I have I said that I would never have a second even if it killed me. I talked to my wife and am looking for anything but that. However if it’s that or die I need to be here for 9 more years until my youngest is in college. Also discuss was having a pain pump put in. In the us states are really making it hard for anyone with chronic pain. I not crazy about it but I think it many be the best. Do any of you have or know someone that has one? At the hospital I asked for help with my crushing depression and crippling anxiety(have had since I was a kid). I was then deemed a sucked risk. Crazy, they took me to the mental hospital in a police in and handcuffs as is state law. I spent 8 days there. It may be a great thing. The last four years have been hard. I loved my work, I worked hard to get were I was very hard. 8 years of college and 20 years busting butt gone. Disability sucks, not just the little money but it is lonely. I’m not sure how much the staff did to help but the people I meet did. I met normal people like me going through things like me. I got to see and meet people who have it worse. I met people that understood and were really helpful and supportive. People that don’t have a chronic illness the guilt that comes with it. My wife is amazing and does so much. She is the bread winner, helps with all the kids activities and is there when I need to go to the hospital, doctor, or gills in for me when I’m the hospital. I feel so bad that I can’t be what I want to be for her. Mental heath is forgotten I think. Doctors rarely ask. I have always had panic attacks but they are getting worse. I have hard time making phone calls or ordering at a drive-thru. I will post soon, I get more info soon

[oldcrohns]

Test Flight with number 3. Any good stories about that plane or something crazy you made it back for as either a test pilot or just getting broken in. I would love to hear. If it happened before 1992 I can likely corroborate

[oldcrohns]

One of the original 7 test flight test beds. I believe this is leaving St. Louis McDonald Douglas’s( before the Boeing merger), line. Most likely getting ready to to Pax River. Feel free to ask questions, I takes me some time because I get the answers from the McDonald Douglas engineers. This just the first one that I have. It is all over things will get better.

[oldcrohns]

Love the 33rd

[oldcrohns]

Mini Swoosh auf dem Nike Air Max 1 – Pure Platinum! 😍

Übersicht: https://ift.tt/2uia7p7 https://ift.tt/2KXKK69

[oldcrohns]

Love this! Multitasking!

Shared from @one_spoon_at_a_time_: Bathroom crafting! What else am I gonna do? 🤷‍♀️ . My body is trying to adjust to having less intestines (again) and trying to flush (pun intended) out all the medication I’ve taken this month! . #crohnssurgery #recovery #postoprecovery #keepingitreal #macrame #bathroomcrafting #crohnsdisease #smallbowelresection #inflammatoryboweldisease #IBD #IBDawareness #crohnsandcolitis #colitis #ibdsuperheroes #instacrohns #spoonie #spooniecommunity #IBDsuppprt #crohnsadvocate #spooniemom #crohnsmom #spooniewife #crohnwife #crohnssucks #invisibleillness #chronicpain #chronicfatigue #anemia — view on Instagram https://scontent.cdninstagram.com/vp/269e2c493431a18a476467f5841b7089/5BA6CFDD/t51.2885-15/s640x640/sh0.08/e35/34649707_973474142827828_7147553860968513536_n.jpg

[oldcrohns]

Captured Fw 190 at Farnborough

[oldcrohns]

Day Three

Still at the hospital. Pancreas enzymes are still high so still no food. I am getting some clears but and least it’s progress. MRI tomorrow to check for stone in the pancreas. If all is good and numbers start to go down then full liquids here I come

[oldcrohns]

When you can list the meds the doctors will order for the nurse.

In this day in age you are frowned upon if you know the pain meds and how they work for you. It’s frustrating when a doctor insists on morphing instead of hydromorphone or Fentanyal. These are metabolized differently by each. Be active in your care and speak up if you are not sure or don’t understand. They are putting chemicals in our bodies to help but they can harm to. Ask questions stay safe

[oldcrohns]

Back in hospital!

High lipase levels along with low K(potassium) in the blood has gotten a minimum sentence of 3 day but will must likely be a 5-7 day stay. Since first being diagnosed in 1998 I have had on average 4 stays a year.

[oldcrohns]

Things no one told you

Pricing new teeth. For 12+ years I have been on Remicade,Humaria,Cimciza, and as of now ENTYVIO. I knew that I would need to be monitored for osteoporosis, which in my last bone scans showed the beginnings in the left hip and femur. So it should make sense that that can wreak havoc on your teeth. The first sign of trouble was on vacation in Belize one of the local men gave me some local snacks. I bit into the snack (local heart of palm) and my tooth broke in to 5 or 6 pieces of varing sizes. I was on hour from the nearest airport and about 2 more from a dentist. I choose to stay and was treated by the local guide that had given me local the snack to me. When we got back to the lodge I was no near closer to a dentist. With only 3 more day I stayed so I didn’t ruin my wife’s trip. I have had to cut to many vacations and trips or drive to the store in the 15+ of marriage to ruin this. Luckily an orthopedic surgeon arrived in the camp that evening and was able control the pain of this exploding tooth. The crush into to its self like a hotel imploded in Vegas. The tooth was robbed of Ca and the structure of the was gone. Now have three missing teeth and several more broken off just below the gum. I was always proud that I took good care of my teeth, no cavities until 6 years ago. Now every tooth has damage and I am ashamed. My teeth look like a meth addict. The dentists(5 so far) have all recommended the all on 4/5 methods of implants over dentures because of the likelihood that I will have more bone loss in the future. Once the teeth are removed the jaw will lose bone(happens to anyone with no teeth), the difference is that there is much more bone loss with dentures. Prices are crazy $40,000, foreign prices are more reasonable but still a lot for me, $8,000 plus travel and lodging for two trip to the country. I set up a go fund me but I’m not sure what and how to anything. I know some of you are thinking “I could never go stay in the jungle.” I have a hard time driving to the store. It was not easy but I was not as bad as I thought it could be.

[oldcrohns]

Complications from Crohns. Pancreatitis is my nemesis. Everytime I get it they want to change the Crohns meds.

[oldcrohns]

Help us, HELP YOU raise #IBDAwareness! We feel there is no-one better placed to raise awareness of #Crohns & #Colitis than sufferers themselves! We love sharing your posts, but would like you to help make sure we see them! 👇 Include hashtag #IBDSuperHeroes in your Instagram & Twitter posts! ALSO, did you know we have a Facebook group? Pop along and join us! #IBDWarrior #CrohnsDisease #IBDlife #Spoonie #UlcerativeColitis #IBDvisible #IBD #Ostomy #InflammatoryBowelDisease #Stoma #UC #IBDproblems #InflammatoryBowelDisease — view on Instagram https://scontent.cdninstagram.com/vp/b79508af286d185f546c9f6ed85cddae/5B5726A3/t51.2885-15/s640x640/sh0.08/e35/29738650_436887130104050_5340750819933290496_n.jpg

[oldcrohns]

Regram - @jamie_0910: Some days are tougher then others , Not all battles are visible on the outside …be kind always #YouAreStrength #ItsOkayToNotBeOkay #Truth #BeKind #MentalHealth #InvisibleIllness #EveryOneStruggles #MyLife #CrohnsDisease #IBD #StayPositive #IBDSuperHeroes 💜 — view on Instagram https://scontent.cdninstagram.com/vp/c79678d2f02ff197abed48de9e7adc64/5B56800C/t51.2885-15/s640x640/sh0.08/e35/29715196_218952592207003_6737341620426899456_n.jpg

[oldcrohns]

Regram - @jamie_0910: Some days are tougher then others , Not all battles are visible on the outside …be kind always #YouAreStrength #ItsOkayToNotBeOkay #Truth #BeKind #MentalHealth #InvisibleIllness #EveryOneStruggles #MyLife #CrohnsDisease #IBD #StayPositive #IBDSuperHeroes 💜 — view on Instagram https://scontent.cdninstagram.com/vp/c79678d2f02ff197abed48de9e7adc64/5B56800C/t51.2885-15/s640x640/sh0.08/e35/29715196_218952592207003_6737341620426899456_n.jpg

[oldcrohns]

ENTYVIO yesterday, just bla to today.

[oldcrohns]

If you are going through this let people take pics(friends and family) I wish I could show my kids and wife. Don’t be ashamed. I was and it only hurt me.