Ok. First of all you were not lying. That is a lot of shit going on. Hate it for you man. I definitely see how that can literally be killing you.

You are a tough dude who seems like you are always trying to do the correct thing. The problem is that has put  you into a monotonous tail spin.

I wish I could tell you to throw everything in that shit van. Sell everything else and head to the East coast. Try the beach, warm weather, and a better VA clinic. But you still have the daughter and mother to deal with and care for.


I do think you need to get to a place where there are more veterans and people who give a shit. It may be possible to bring your mom but I have no idea about what to do about the daughter.

I do think this place was the right place to air all of this. Hopefully some local med guys can read over this and give you a third or 4th opinion.

This is not really my area of expertise but there has got to be something that can be done to help improve your quality of life. Cause you are correct your pics show you deteriorating and you are too young for that.

Keep your head up and keep searching for someone to help out. There has got to be an answer. Don’t give up bro

And definitely keep us updated.

My prayers are with you man. I know how you feel and face some issues similar to your, though not nearly as severe.

You are doing a great job dealing with all of that.


Keep fighting the VA, You need help and they should provide it.  It almost sounds like you need a disk replacement or back fusion. That might help

For what it's worth, my grandfather had significant bowel issues (including UC) and was ultimately fixed after a bowel resection. I think he might have changed his diet slightly, but I definitely had beer and wings with him in the 20 years he lived after that.

Enemas are sometimes used to treat UC, even daily, but I have never heard of multiple like this.

God walks with us, so he feels all our pain.

This is going to sound crazy…. Some will get it.

Your pain glorifies God.

Stand strong. This is as close to hell as you are ever going to come.

Our church is praying for you this morning.

There's always a choice. It may seem like there isn't, but there is.

Sacrifice is a test, nothing good in this world comes without sacrifice.

You can win. God and America both love a fighter, a man who just keeps getting knocked to the fucking ground. Over, and over again, bloody and battered. And every time that man gets up again, everyone knows how much it took for him to do it, and it helps all of our humanity. And every time they think he has to be done, he staggers to his knees and rises again.

Get.

Up.

Smashy,

My 14yo grandson had his colon removed entirely to severe UC and infections.

The surgeon commented that the colon was one organ you can live without.

Has this ever been suggested in your case?

Thank you to everyone for the support being shown here. It does help. I want to clarify a couple of things so I don't mislead anyone. I'll try to remember the points, too many posts to quote.

As hard as my life is, I'm not completely disabled. I work full time. I have to, gotta support myself. I still go to work every day, after I've dealt with my usual routine (at least as long as my leg and foot keep working). But my life is exhausting. I feel like I've been pulled through the wringer by the time I'm done doing what I have to do, and then I have to go to work. So it's a challenge but I still do it every day.

Someone mentioned earlier getting disability. With the VA I'm already getting 30% disability. It's only a few hundred a month but it helps. But years ago when I wasn't as bad off as I am now, I looked into getting that raised, but it won't happen. I was told there are certain limits for certain disabilities. For various gastrointestinal things like mine, it's capped at 30%. That's the limit for things like this and the VA won't go any higher.

I am getting some help from the VA but it's a very slow drawn out process, and the fact that there aren't enough providers and funding means we (the patients) often get farmed out to other providers in the community, or set up with telehealth providers in other parts of the country as I am. I was recently seen by the neurology dept, I had to drive up to the Portland VA for that since there are none anywhere else. A trip like that is difficult, given my issues. I have to prepare for it by not eating for three days to reduce what I have to deal with when I go up there. I often do the same for things around here where I live, if there's something I want to do on a given morning. I have to plan these things in advance and deal with it in my own way. I can't just tell someone I'll meet them for breakfast at a restaurant at 7am. That's not happening. Anyway, getting sidetracked. The neurologist ordered another more comprehensive MRI on my middle and lower spine, which I'll be doing this week at a civilian hospital here in town.

They also ordered a nerve study on my legs and hips. That's scheduled for third week of October, but I have to drive up to Springfield for that to another outside provider. About an hour and a half away. I can do that, as long as I can drive. For those who don't know, a nerve study is when they stick needles everywhere and zap you with electricity to determine exactly which nerves are having trouble and where, so they can figure out what is going on. It's the same thing I had done on my wrists. I have severe carpal tunnel in both wrists. Back in March of 2020 I had a nerve study done on both hands up in Eugene. That showed that my problem was almost at the worst and I needed surgery. I was waiting for the surgery to be scheduled when covid happened and all non-essential surgeries were put on hold indefinitely. When that finally became a possibility again a couple of years later, I was too busy dealing with other issues and I couldn't do that, so it never happened. Getting sidetracked again but it will be the same thing on my legs.

Since the neurosurgeon in Springfield declined to see me, the VA is now sending my to see our own neurosurgeon for an opinion, but that's up at the Portland VA (about 3 1/2 hours away) and not until late October. It's not ideal but it's something down the road.

My brother and his wife will be taking me to that. They went with me to see the neurologist. His wife is a nurse who's really good, she wants to be there to witness the exams and ask questions that I won't know to ask so they can get a better handle on what I need. They live two hours away. I drive to their house around mid-day, and from there I ride with them up to Portland. It helps because that long of a drive would be really difficult, especially now that my car has died and I have to use my van. They've really been stepping up to help as much as they can. They're willing to come down if I need a ride for a procedure or something.

I have a few more points but I have to go do something. I'll add more later.

Smashy, I've been thinking and praying for you since early this morning, I watched this sermon this morning (my favorite preacher BTW) and I thought about you throughout the message, The preaching begins around 30:42 , give it a listen if you can, and may God Bless you sir.

You definitely have my prayers, and the Good Lord will hear yours and bless you....

I pray for your healing

I really don’t know what to say. Your situation sounds awful. I’m so sorry you’re going through this. I’ll be keeping you in my prayers.

Not a medic here by any means but I agree that the use of enemas is probably counter productive.

As to the lack of bowel motility I wonder if the spinal/nerve issues aren't the root cause? Maybe ask your doctors about that.

Per Martin Luther:

"I don’t share the opinion that suicides are certainly to be damned.  My reason is that they do not wish to kill themselves but are overcome by the power of the devil. They are like a man who is murdered in the woods by a robber."

Yep.

Smashy, I cannot pretend to know what you are going through.  I have no doubt that the temptations are strong and may even appear rational, but some of the brightest minds of Western thought have grappled with this issue and found it unacceptable.  If love for self and family are not enough, let fear of the Lord do the work.

You can read a short article on the topic here.

There is value in suffering and may we all bear our crosses with honor.  If there is anything I can do to help, please PM me.

Nah.

But I hope medical advancements make you as comfortable as possible.

Well I’m glad you are getting some help and have people who are able to assist. However I hope some people are able to reach out and help. You should not have to enema the hell out of yourself every morning.

Like someone said earlier. Keep getting up and fight. It’s got to get better.

Praying for you. Im on the east coast but I’ll help if you need something.

Oh really? Book chapter and verse. I dare you.

What a stupid ass reply.

Smashy, from the little I’ve looked through this thread it appears you are a believer. Remember God’s strength and grace is made manifest in our weakness.

I pray that the Holy Father God Almighty gives you, Smashy the strength to persevere despite all the adversities you face and that he gives you comfort in your pain. I pray that The Lord Jesus Christ's takes some of your burden and helps you with your tribulations. May God shine his face upon you, may his Holy Spirit touch you and may peace be with you. In the name of Jesus I pray, Amen.

I have a GI doctor, been seeing her for a long time. She's the one that's been prescribing the various drugs to try. She's aware of my use of the enemas. Every doctor I've ever seen over the years has been aware of it.


No, it's not. No doctor has ever told me to stop using them. It doesn't aggravate the issue. It's the only way I have to deal with it.


No. The doctors are aware of all my issues. The UC symptoms started over 30 years ago when I was in Saudi. My back injury that's contributing to my current leg issues happened 18 years ago. They're completely unrelated.

That's an understatement. Although I'm still trying to stay involved in different things. I love going to my church. I went to watch a baptism today. They had a big one at the river, a bunch of people getting baptized. It was great to watch and support them.

But dealing with the everyday issues is wearing on me. I don't know how much longer I can do it. My body is getting older while the symptoms keep getting worse.

Again not trying to be an asshole but if you’ve been seeing that GI doctor for a long time and you are still dealing with this why not step out and get another persons opinion.

I’m not a doctor, but my brother is and I feel like he would say something like WTF if I told him you were doing 10-12 enemas a day.


Again don’t get frustrated just throwing that out there. Again I hope you turn the corner on this thing and get back the quality of life you were used to before all of this occurred.

SavedByTheBlood is correct- suicide doesn't sin people to Hell- the ONLY thing that does is rejecting Jesus Christ

Not trying to derail this thread but I am compelled to address this.


1 Corinthians 3:16-17

Do you not know that you are God's temple and that God's Spirit dwells in you? If anyone destroys God's temple, God will destroy him. For God's temple is holy, and you are that temple.


Seems pretty straightforward to this layman.

The VA rates Crohn’s disease as follows:

Diagnostic Code 7323: Colitis, ulcerative

100 – Pronounced; resulting in marked malnutrition, anemia, and general debility, or with serious complication as liver abscess
60 – Severe; with numerous attacks a year and malnutrition, the health only fair during remissions
30 – Moderately severe; with frequent exacerbations
10 – Moderate; with infrequent exacerbations


Sounds like you are 100% according to what you described.  Maybe a Veteran Service Officer can help you get an increase in your rating.

Smashy:  lots of smart folks here on your side.  I can’t help with medical advice but I’m another voice in prayer to God for you. Please keep hanging on.

OP as to your situation i have nothing but empathy.

I myself deal with physical afflictions every day. I have been diagnosed with venous reflux disease and venous deficiency.

Basically the blood that flows down to my legs doesn't like to flow back up to my heart. It causes my legs to swell and everyday it feels like my legs are on fire and I'm in constant pain while I'm on my feet.

I've met with the top guy regarding my situation in my area and basically there's a procedure thats 50/50 with a whole host of side effects and thats it. I've elected to not do that and just carry on.


So you're not alone. A lot of other folks have issues to. I'm not saying this to make light of your situation,  just to let you know you're not alone.


Feel free to PM me and I'll be glad to chat or if you want to exchange numbers, talk.



God loves you and so do I. I'll be praying for you brother.

If he is real I sure fucking hope so.

Getting another person's opinion would be an option that would require resources I don't have. The VA has provided me with a GI doc, that's all I need (in "VA think"). But we started talking about a colostomy the last time I saw her. My next visit with her is in a few weeks and that's what I'll be asking about in more detail. She and I are on the same page that there's nothing else left to try, now I need to get more info on that. My brother's wife will be there for that appointment because she wants to meet the doctor and ask her own questions about it and find out about this step.

@Ninjaman

I'm sorry to hear it. I know the feeling. It's been 17 years and I still miss her.

My favorite picture of her:

Attached File

I've only been sleeping upright like that for the last few months. The other issue has been around for over 30 years.

Might want to try a correct translation.

If any man defile the temple of God, him shall God destroy; for the temple of God is holy, which temple ye are.

It's not a standard treatment, and not something a doctor told me to do. It's something I found that works for me. It's not easy, in fact it's very hard on the body. But not doing it is worse. I'd be dealing with my issues all day. It's not making the condition worse or anything like that. My doctors know it's the only thing that works for me. We've been through all the drugs and they aren't an option. The only thing left is a colostomy, which I'll be looking into at my next appointment with my GI doc.

Just going off my experience helping and treating injuries fixing poor sleep is one of the quicker ways to claw back some quality of life.

Been going through a lot of stuff with my Mom for a long time.  

Lack of sleep was a huge complication for her.  Of her several issues she crushed several vertebrae in her low back making it impossible to sleep normally.  That was compounding lots of things over time, especially mentally.

We got her a recliner that felt good to her, and it worked for a few years.  What really helped eventually was an adjustable base bed with a sleep number mattress so she could customize the angle and support as needed each night.  It was an investment, but it greatly reduced the impact her back injury has on her.

A trick I use on an adjustable base bed with a memory foam mattress to decompress her discs in her back is to bring the head and foot up and lay down and let the mattress mold to her shape for a bit, then once she's sort of held in place she can lay the bed flat and it will stretch her back out as much as needed to reduce the pressure and pain.  Since your problem seems to requires compression you might be able to reverse that process and sleep with your head/foot modestly elevated.

What are you sleeping on now?  Is there something that you think might be better for you?

I'm not going to derail OP's thread.

If you and your KJV want to debate PM me or start a topic in the Religious forum.

A chair. A recliner to be specific, but not reclined. Just sitting upright. Can't think of anything else.

I've actually been sleeping in a recliner for several years. I couldn't sleep on a bed or couch because it aggravated my old back injury and I was in constant pain. I tried sleeping in a recliner, reclined back with feet up, and it worked. It was the right shape to provide my back the support it needed so I didn't have lots of back pain every day. I started doing that every night and it was great. I could never go back to a bed, I tried and the back pain returned. So I've been sleeping like that for several years. It was okay until the last few months when this issue started with the nerve causing leg pain. Now I have to sleep upright to prevent that, and the chair is the only way I've found to do that.

That was a good message

Can't sleep again. Like most nights. Weak and exhausted.

Foot numb.

I was going to suggest carnivore, it’s done wonders for my health. Gut, BP, inflammation (which UC is inflammation based).  


OP consider trying this for a bit.  


Is there no one who can help navigate the VA.  Shameful how poorly this seems to be run.

Hang in there, my friend. Can I call you that seeing as we've never met or conversed outside this thread?

Yours is a tough row, I'll not discount that. I don't pretend to have any answers, but I do recall a guy who had this years ago and he too had a section removed. Went from miserable to normal. It does seem like there should be something between where you are and colostomy. (However, back in the early 90s a buddy of mine's father had that. And he ended up with a SMOKING second wife, so it can't be too inconvenient if that was the case 30 years ago. lol).

I'm encouraged by most of the responses in this thread. You've obviously made an impact on people whether you meant to or not and the hive here is counting on you continuing to do so. I imagine your local community is even more so. If you went to see a river baptism, I'm sure there were people there that know and love you.

Please hang in there as yours will be an amazing story to tell once you reach the other side of this hell.

Brother, it looks like you have good family members helping you out.

Consider asking for pain meds. I toughed out neuropathy pain in my entire body for 2.5 years. I turned down gabapentin 3 times, then when I finally could not take the constant pain anymore, I tried it. Wish I had tried it years ago.

Take one day at a time brother, medical stuff does not happen quickly, it’s a slow process. You have your SIL nurse looking out for you and you have appointments with specialists. You will make progress moving forward.

Keep the faith one day at a time.

Get away if you can. I know that sounds weird but move to Texas or Cancun. It sounds like you have been doing the same thing the same way for 30 years.
Time to change the bat. Break all new body parts. Your rusting in-place, literally.
You are not promised the next second, minute, hour or day so treat each one as fucking magical.

Absolutely this.

Find another GI expert to consult.

Smashy, hang in there my brother.  Per your confession, you have been purchased with the blood of Christ.  You've been made holy in the eyes of God.  He values and loves you more than you could ever imagine.  Try to find hope and rest in this.  Regardless of your current circumstances, you will one day have a perfect body with no pain or sickness.  

Now, let's talk about your medical issues.  I'm not a doctor, nor have I played one on TV.  However, I can relate, to a degree.  I have Crohn's disease myself, which is pretty similar to UC, except Crohn's can affect any part of the digestive system, whereas UC only affects the colon.  I had a stricture of scar tissue in my small intestines that caused me to eventually be on a liquid diet.  I dropped a bunch of weight like you and was in a lot of pain.  This led me to eventually seek surgery to resect the diseased portion of my small intestines, and I've lived a 99% normal life since with the use of Humira.

You need to get your colon removed yesterday!  You can't have UC if you don't have a colon, i.e. you'd be healed completely of your UC.  Being ablet to eat and fuel your body again will help with your other issues.  This likely means you'd need an ostomy bag, but they can do a surgery these days that leaves you with a "j pouch," which would allow you to continue having BMs.  I'm extremely surprised your GI doc hasn't suggested this years ago based on the severity of your disease.  If I were in your shoes, I'd be pressing HARD for this surgery.

Now, for the back issues.  My wife had a bulging disc that used to compress her sciatic nerve.  It caused excruciating pain.  She couldn't get comfortable sitting or lying down, and sleep was difficult.  She had been told the same as you: that surgery could be hit or miss, and that some steroids, physical therapy, and chiropractic should sort her out.  None of that had any lasting effect, and she eventually force the issue of surgery.  I'll never forget the look of pure joy when she woke up from surgery and realized her back no longer hurt.  

I can't imagine the frustration the VA is causing in your life.  Sadly, this seems to be pretty common.  I urge you to do whatever you can to find some doctors that will explore the options of surgery and hopefully get you fixed up.  You're in my prayers, and I'm asking God for an overwhelming sense of hope that there's a light at the end of this tunnel, relief of pain and symptoms, and doctors who have the knowledge and wisdom to help you out of this hole.

Romans 5:3-6
3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

I did carnivore. I had to stop eating everything. MeatbNd everything else. It all aggravates I tried humira. It caused horrible side effects. CaNt take any immunosuppressant drugs.

Crying everymorning. Hate this life. Brither will come if I need a ride but that's all. I hate living this life alone. Misery