I made it 6 months: A new record!

I've been enjoying my time in the outside world, but I'm back in the Big House😔

I've always had trouble getting to a high rate running tube feeds. I was finally able to reach 70ml/hr. Things were great until this last month, and now I've hit a wall. Feeds thru the jtube are extremely painful and I get very very nauseous-I've bumped down to 25/30. With the tissues and muscles of my throat not working, I can't vomit, hiccup, or burp. I'm able to vent my stomach with the gtube, but it provides little relief. Plus I'm getting pretty severe spasms in the upper part of my throat-kinda like a charlie-horse. Also, I've only had 4 bowel movements this past month. It's not narcotic induced constipation, it's the tissues and nerves not coordinating.

Sunday I finally reached my limit. I hadn't run feeds in 2 days and the throat spasms pretty constant. Taking a deep breath is very difficult, I actually passed out earlier in the week. Abdomen pretty rotten as well-like take it out and toss it in the trash hurt. Overall pain at a 7;

Luckily I'm very well known in the ER. Pain was addressed while waiting for surgical and gi consults.

Admitted for pain control while my medical posse here and Duke come up with a plan. The main thought is that the autoimmune diseases are going haywire. I've received two rounds of Cytoxan and Rituxin last month with the hope that something can stop this freight train. One thought is to transfer to Duke for another few rounds,maybe added an additional cycle.. I'm not due until the end of August.

Surgery is waiting to see if gi feels the intestinal blockage needs surgical removal. This past month I e used 3 bottles of mag-citrate each week mixed with Miralax thru my Jtube. Drs are doing the same here at an extremely low rate. The hope is that the enough fluid can be drawn into the colon that my weak contractions will be able to flush it all out.

There's also a full gastric bypass being tossed around, but I'm super really not a fan of this idea.

Also, the immune system is ticked enough to attack the eyes and I have a nasty case of uveitis.

Right now between muscle relaxers for the throat spasms and pain meds for the throat/gi mess is helping. The laxative is running slowly, and with the added help, it's going kinda oK. I just want a fix, any fix.

I've been aggressively trying to lower my pain meds for this exact type of situation. I'm going to have procedures and surgeries, and relief is harder to attain.

I had a long talk with the hospitalist and te posse and right now I have 4mg of morphine q4hrs and my normal meds as well. This has made a big enough dent for my blood pressure and pulse to trend down, and O2 to rise due to being able to take fuller breaths. Valium is also helping to loosen the muscles.

Please cross your fingers that the med posse can figure out what is going on, for the blockage to resolve without surgical intervention, for the spasms/Charlie horse to lessen, and a return to my lower med doses that I've really worked hard to reach.

I also know I'm extremely blessed in that a goal of admission is always pain control. Since I have an obvious novel of progressive diseases, I think docs are more receptive to control.

This has also made me want to find each and every one of your rated "R" word providers and shake them until they get a clue. I spent 24hrs in the ER due to no open beds, and I heard the various conversations in rooms and the hall. It might sound overly dramatic, but my heart aches for those of you fighting with all you who face difficulties. I could hear obvious drug seekers, and 2 people left when they had IV access for street drugs. But I also heard patients that I think we're in legit pain, and depending on the dr, the situation was treated differently. Back pain, unless an obvious new injury, definitely was not taken seriously. Hanging out in the ER for that long did illustrate the current view on ER narotic use. There were posters in various areas with recommended narotic use.

It's an ugly world.

Rocckyd:
I am genuinely sorry to hear that you are having another stay at the hospital.

In being a "frequent flier" to hospital admissions, myself, I find that each hospital stay becomes more
emotionally taxing as my chronic health deteriorates further. And it becomes harder to recover to my prior baseline of health and function, a gradual erosion over time.

I do not know if you are a NetFlix fan, but Season 4 of "House of Cards" was recently released. I use NetFlix as a means of entertainment and distraction from my health plight. Jigsaw puzzles and needlepoint sewing projects also help me fill the hours.

I read that you have had only 4 bowel movements in the past month. That is not typical constipation but a distressing symptom that your lower digestive system is losing neuromuscular competence. A diverting ostomy would be an appropriate discussion and, I would think, be a relief.

I have heard people say, "I would rather die before having a bag" (ostomy pouch). It is unfortunate the ostomies continue to generate such a negative stigma. I have a permanent ileostomy necessitated by a severe intestinal perforation - the tissue of my intestines thinned by years of corticosteroids. My ostomy is absolutely no big deal. It is well behaved and gives me little fuss. Caring for my ostomy is as routine as brushing my teeth. The ostomy products available are amazing, very much state of the art. Ostomy products a thin, discrete, and easy to apply. No one would know I have an ostomy unless I told them.

A diverting ostomy might significantly improve your quality of life. A temporary diverting ostomy can be reversed at a later date, should your condition improve.

I will be watching for your updates. Know that I am thinking of you and sending healing energy.
- Karen -

I hope you've gotten some relief and maybe even some answers, I couldn't imagine the degree of frustration you must be wrestling with.

Oh Rocckyd,

So sorry to hear you are back in the hospital. Hoping and praying that you get a non-surgical resolution to your problems.

I also just want to throw out there that having an ostomy can make life a lot easier. I have nerve damage that also creates trouble with the muscles and stuff. It spasms but doesn't move things along. I had a colostomy 1 1/2 years ago and after losing 1/2 my colon, things are better. They debate taking the other 1/2 of my colon because of continuing troubles with constipation.

Anyway, glad you are getting much needed pain relief and other treatments. Keep us updated if you are able...I think about you often and always hope you are doing ok.

Gentle hugs sent your way...


Sunny13

The ostomy talk hasn't been broached yet, but there is quite a bit of head scratching.

Last night was awful. if it could go wrong, it did go wrong. I felt so bad for the night shift hospitalist. He was constantly in/out of the room. He was a good guy and at one point just pulled up a chair and waited for some meds to kick in. Definitely gets a gold star. He said he'll stop by tonight to check in. Dr Rockstar!

Though at this point is a transfer down to Duke. I'm not a fan of this option. In just seems so pointless.

So-birthday in the hospital again. At least I have good relationships with many of the nurses and Drs. That'll make it a little bit better.

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Rocckyd, Happy Birthday to you!

Now blow out the candles and make a wish!!

Rocckyd:
If you have gastroparesis as well as severely slowed motility of the large intestine, a trial/temporary loop ileostomy would make a lot of sense.

Temporary loop ileostomy: It would involve bringing up a portion of the small intestine though the abdominal wall (a punch hole or key hole), splicing the section of incision, rolling back the end of the intestine like a turtleneck shirt, and sewing the two stomas in place. No resection or removal of intestine is involved, as this is a temporary ostomy to see if it brings you relief from severe constipation.

A loop ileostomy has the potential of bringing you significant relief. Ostomy supplies are quite advanced, low profile, and discrete. I use the Coloplast Mio. The Mio wafer (the portion that attaches to you skin) is composed of an elastic polymer that contours intimately to the topography of my skin and moves with my body. The pouch is a mere 5". No one would know that I have an ostomy unless I told them.

Most people with an ostomy due to pelvic floor dysfunction or slow intestinal motility report that they wish they had opted for the procedure much earlier.

There is a lot of negative stereotyping of ostomies that is inaccurate. The breadth of ostomy supplies is amazing and the pouching options are quite advanced in the materials used. For me, having an ostomy is no big deal. It is similar to brushing my teeth or other activity of daily living. The ostomy pouch is discrete and low profile, absolutely odor free.

Visit the United Ostomy Association of America web site and discussion forum. You can visit and read through the many active threads and posts - without actively joining the forum.

www.uoaa.org

- Karen -

'it is what it is."

That's what I say to the N.P. at my Pain Doctor.

I hope they figure things out rrockyd.

Wishing you a relaxing low-pain day.

Take care.

Rick