Tag Archives: crohns disease

Lets Talk Crohns!

GREETINGS FROM CONFEDERATE POINT: Hey everyone. My sabbatical has been going great, despite rumors to the contrary. My health has improved significantly, and my outlook is positive. To my fellow Crohns disease sufferers, I give a special hello, may you find peace, and power despite the ongoing struggle. I know how you feel. Be blessed in your endeavors.

While I am on the subject of Crohns disease I have some technical stuff about the problem I want to share, and hopefully help someone who is struggling.

First off to my friends in the medical community I need to take you to the wood shed. You have utterly failed your patients if you regularly prescribe habit forming, and mind altering drugs without first exhausting every resource at your disposal. We want good outcomes; do we not? While there are cases where there is no choice but to prescribe such substances, it should always be the very last resource. Some of these medications are very dangerous, and seem to have a way of messing peoples lives up. Always remember to treat the underlying problem, if you can. If it is beyond your expertise REFER the patient. Unless the patient has proven to you extensively he/she can maintain a grasp of the technical details regarding his/her disease/injury/sickness be suspicious, and remember to always be positive with your patients. The power of nature, and the mind to balance the body can be quite impressive, and when you see good outcomes, it will help balance out the terrible things you see on a daily basis. I respect you for standing in the trenches, and trying to make a difference. Perhaps one day I will be able to join you again in the trenches.

To those who are suffering with Crohns and have had terrible/extensive problems with treatments, as well as poor outcomes I know what you are going through, and it sucks. I have found it is better for me if I can maintain as much of a mental hold over my illness, and surroundings as possible; however that is not always possible. I have found that getting with the right doctors, or in those cases where NEW doctors have been suddenly thrust upon me, a good rap session even a couple of hours with the physician opens the door for potentially better treatment . I have found educating the physician, if I can, is helpful. Sometimes though it is difficult to educate the atypical physician, and you must deal with it. This is where keeping as strong of a psychic hold over my illness helps a great deal. I have found coping skills have much to do with our outcomes, and ANYTHING that could potentially undermine said skills should be treated like the enemy they are. I have found it is hard and almost impossible, in the real world to succeed with a disability such as Crohns disease. Kudos to those of us who are working fulltime jobs and dealing with the BS from the Crohns disease.

Thanks for stopping by. This is my offering to you for the day, a blessing, as the dew in meadow let your problems be.

Mark
BLOG OWNER

Sunrise

Sunrise

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Filed under Crohns Disease, Life as a Disabled Veteran, Personal, Technical

Lance Armstrong, Cycling, Etc

“Does Lance Armstrong enjoy cycling? Of course he does! He has a ball!”

I saw this one today, written by Kuruis, on Reddit Jokes, got a laugh, wanted to pass it along, so here it is…lol

I am lurking the web, newspapers, movies, and documentaries mining for material to go into my next blog entry. The jokes help keep things into perspective. Sometimes, I try too hard to come up with an entry, and write a bunch of crap, or nothing at all.

Thanks to everyone who has, and is still supporting me in this time of difficult transition, in my life. Having Crohns Disease, and all the body falling apart problems 28 years of it entails is a harsh reality, in and of itself. Adding the marriage breakup to the mix, makes for some real crappy days. Thanks to all of you for cruising my blog, and sending the well wishes.

This too shall pass.

Cheers,

mark – aka still need a car to get back and forth to doctors’ appointments – armyveteran ūüėČ

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Filed under Blogging, Crohns Disease, Humor, Life as a Disabled Veteran, Personal, Sports

Could Thalidomide Be The Answer For My Crohns Disease?

As I was doing research on treatments for Crohns Disease, I ran across some interesting research where Clinicians are using Thalidomide to treat Crohns Disease patients unresponsive to other treatments. In several studies, even the patients who dropped out of the clinical trials because of side effects, ranging from drowsiness, neuropathy, and constipation, had positive results from the use of this drug, on their disease. The positive effects on Crohns disease were prevalent even in lower doses, with some patients attaining total remission

Thalidomide was banned in the mid part of last century due to severe birth defects, so it would have to be carefully monitored as to who would be able to use it, if approved, and accepted by the Medical Community, for widespread use; nonetheless, for people like me who have had a bad reaction to everything except steroids, to treat my Crohns disease, this may be an alternative I may be able to take. I will be asking my GI doctor. This drug is an earlier version of the new main line Crohns disease treatments, Anti Tumor Necrosis Factor (anti TNF) drugs. I will definitely investigate this.

My GI doctors want me off the steroids, and I fully understand why, but we have not found an alternative yet. We thought we had an alternative, but when I got the prescription, and checked it against my records, I saw where it caused me a significant GI bleed. I was throwing up dry blood from it several years ago, so I cannot use it. Maybe low dose Thalidomide will work, or maybe not. I will keep looking though. Lucky for me, my GI Clinic is affiliated with the University of Florida, and Shands Gainesville, so I get access to treatments before others, if I choose to participate, in clinical trials.

Thanks for stopping by. I still need a car if ANYONE can help me out with a clunker. I would be happy to make payments. I just do not have a down payment. I am planning to move closer to the hospital, but will need a car so I am not stuck, in a new town, with no way to go. I guess we can say getting a car is on my “Bucket List“. I really, really, really need one, and hate to ask, but at this point I am about ready to beg.

Take Care,

mark

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Filed under Blogging, Crohns Disease, Health, Life as a Disabled Veteran, Personal, Veterans Issues

Must Call Doc 2Morrow, & Hopefully See Doc Soon

I have got to call the docs tomorrow, for real. I cannot put it off. I think I busted one of my abdominal surgeries loose moving into my upstairs apartment. Please say a prayer, or three for me. This is painful.

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Filed under Blogging, Crohns Disease, Health, Spiritual

Another Flare of Crohns & Pancreatitis – This Is Crazy

Today is not such a good day. I woke up in the middle of the night, at the end of my first sleep, with incredible pain, in my abdomen. I took medications prescribed for this, to alleviate, and mitigate the problems causing the pain, but all it did was keep it from getting worse. I never got back into the rhythm of my second sleep, and I was looking forward to it.

My Crohns is flaring up, along with my pancreas. It is inflamed, again, so on top of a Crohns flare, I have pancreatitis. It is not bad enough yet, to go to the hospital, and I hope it does not get that bad. I was planning on getting the money to pay my rent here, but they will just have to understand that I cannot function, in society, when I am having these types of problems. This would not be a problem if I got paid for writing about it. ūüėČ Being able to write at all is a good sign I may be able to¬†stay out of the hospital.

I am truly surprised the stress of everything I am going through has not done me in, health wise, already. I am grateful it has not. I have bunches of stuff to do. Finish unpacking, get money for rent, go food shopping, change address with all the companies I do business with. However, I am taking it easy, not eating anything, and pushing the Gatorade, in the hopes I will snap out of this today, hopefully this afternoon.

Someone made a comment they do not understand why I write about such personal things in my blog. I do this because I want other people, in circumstances similar to mine,  to know they are not alone. I also write about the problems I confront as a disabled veteran, a person with crohns, and other health problems because it is therapeutic for me to do so. I am not going to apologise for writing about the problems I have. They are very real, and very hard to deal with. I am always broke because my disability check is not very much, not even for one person. Since I have limited means, I have to get out of myself somehow, hence this blog. In the 25 years I have struggled with illness, I have never had a major collection taken up to help me defray the costs I incur. On a couple of very rare occasions I have had someone give me a few bucks. I am not a beggar, but even if I were, people would make a snap decision, and not give me a penny. This blog is my tool for good mental hygiene, and to educate others about the struggles the walking wounded go through.

As for the people who say this blog is hard to read. Do not jump to conclusions when reading my home page that all I do is talk about Crohns Disease, neuropathy, Chronic Multifactorial Pain Syndrome, Permanent Scarring, Arthritis, osteoporosis, rheumatoid arthritis, bone mineral loss, loss of bone mass, spondylosis of the back, bulging/herniated discs, nerve damage, chronic blood loss w/ iron deficient anemia, requiring at a minimum, monthly iron infusions, and even more problems than I can remember, or even care to list.

Please look through my blog, and you will see  I cover many different topics, including, but not limited to, Art, Black History, Civil War, Creative Writing, Crime, Humor, Local Florida News, Nature, Poetry, Political, Spiritual, Sports, Veterans Issues, and Weather.

Thanks to all who stop by, and read my blog. Thanks to all who pray for me. I really need extra prayers, at this time of high stress, in my life. I am doing my best to stay out of the hospital, and your prayers, and well wishes do a whole lot to lift me up.

Cheers!

mark

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Filed under Blogging, Crohns Disease, Life as a Disabled Veteran, Personal

Thank You!!

Thanks for the overwhelming positive response to my last post regarding the additions of a Page 2, and a Page 3, to my blog. I have never had 50 plus likes on any post I have made. I am ecstatic over the positive reception, to the descriptions, of ¬†additions, I will soon be making to “armyveteran”.

As with so many undertakings, when one is trying to make something better, unexpected things happen.  Delays are the norm when one is waiting for another writer to submit their work. I am hoping to have the work from my wife within a week. Then I will be lining up other guest writers, and making a contribution, or three, of my own.

The “Page 3” material is in a state of flux. Part of this material will be photographs, from a really nice digital camera, I recently purchased. It is the most powerful camera I have ever used, and I have not even put the batteries in it, nor have I uploaded its disk, to my computer. I will just have to get over my fear of this powerful camera, and just use it. Another thing holding me back is the intensely hot weather here in Florida. The weather is the norm, for this time of year. I am just getting older, and the Crohns Disease is robbing me of ever more physical capacities, such as the ones needed to go out, in the heat, and capture summer photographs. The weather will be moderating, hopefully, in a couple of months. I can always go out early in the morning, or late at night, and take my photographs, at those times, until the weather cools down, as I am able.¬†The rest of “Page 3” will be made up of jokes, and humorous essays written by me, and borrowed from other sources. Of course, I will give credit, where credit is due.

Once again, thanks for the great response, to the proposed changes, on my blog. I wanted to let you all know I am still implementing them, but have some issues, which I have outlined in the above paragraphs.

Once again, thanks for all the support.

mark

 

 

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Filed under Blogging, Creative Writing, Crohns Disease, Humor, Life as a Disabled Veteran, Personal, Weather

Quality Medical Care Delivered At St. Vincent’s Medical Center – Jacksonville, Florida

St. Vincent’s Medical Center, Jacksonville, Florida

With some of the negative feedback/reviews of hospitals, and doctors I have posted, I find it only fair, to report, when  positive events happen, at these facilities.

Recently I was urgently admitted to Saint Vincents Hospital, Jacksonville, Florida. From the moment I arrived at the facility, to the day I was discharged I was treated in a very compassionate manner, by highly qualified health care workers.

In the emergency room the nurses, and physicians were attentive to my needs, and listened closely to what I told them had been going on prior to the episode, what was going on at that time, and what I thought it felt like, based on my lengthy history struggling against Crohns Disease. I told them it felt like I had pancreatitis, and I had the same pains I have when I have a bowel obstruction. They were thorough with their questions, and responded to my pain in a very fast manner, not making me go through tests before getting me some relief. I am grateful they did so because I was in extreme grievous pain.

When I was admitted they told me the CT confirmed pancreatitis, and they needed to do an additional lab test on me to exclude something. After a couple of days I was able to give them what they wanted to perform the lab test, and within a day, and a half had the results. They discovered I had an infection that had released spores into my colon causing my colon to become inflamed. I had colitis from this infectious spore problem, and that is what was making me feel as if I had a bowel obstruction.

My Hospitalist was Doctor Sanchez, and she was the best Hospitalist I have ever had. She was very patient with me, and responsive to the problems I was having, including the severe pain caused by the Pancreatitis, and infectious Colitis. Moreover, she fully explained everything¬† that was wrong with me, and did not push me to leave the hospital early. The Physician Assistant, Dawn, who covers rounds for Dr. Abassi was¬† very thorough,¬†with the questions she asked, and the exams she gave. Dr. Abbassi,¬†of Digestive Disease Consultants, Jacksonville,¬†Florida, (904) 388 – 9696, watched over my case closely, and understood when I declined a probe of my pancreas because it still hurt¬†too bad. Dr. Abassi, and Dr. Sanchez¬†supervised a¬†brilliant diagnosis, and miraculous¬†treatment. To sum up the medical care I received, “They saved my life!”.¬†

The entire Nursing, and Associate Care Provider staff was respectful, considerate, compassionate, competent, responsive in a timely manner, and all the other great qualities a person wants from these professionals who have constant contact, and interaction with patients while they are in the hospital.  I am very grateful for all they did for me. From getting my pain shots to me quickly, keeping up with my voluminous medications, getting my routine medications to me on schedule, and watching out for changes in my health, the nurses did an outstanding job. Christa, Jessica, Jose, Gracie, and Denise are some of the nurses who took great care of me. The ACPs did a great job keeping up with my vitals, changing my bed sheets, giving me new hospital gowns, keeping my ice water filled, bringing me juices, talking to me in a compassionate way that helped keep my spirits up, telling the nurses when things were not right, assisting me into the shower,  and bunches of other stuff. The Nurses, and ACPs did an exceptional job delivering top-notch, compassionate care, to me, at a time I could not advocate for myself. I am grateful for all they did for me.

Had they not checked me for that specific infection it would have killed me. People are dying around the world from it.¬†¬†Even my Gastroenterologist’s Mother in Law passed away from it. The¬†weird part¬†of it all is I did not fit into any of the predisposing scenarios, nor did I have any of the risk factors for it, yet somehow I got it. I thank the Good Lord he inspired someone to test me for it.¬† After being on antibiotics for just 2 days I started feeling better, and after the full course, I must say I have not felt this well in a very long time, years even. I still have problems from all the surgeries, and the wasting from the Crohns disease, but the problems from the infectious Colitis were weighing heavy on me, unbeknownst to me, and after receiving the treatment for it, I feel so much better!

Here is a significant indicator things have improved. I have been seeing a Hematologist for 5 years due to long-term blood loss, from inflammation, due to Crohns disease. Over these five years, no matter how much iron was infused into my veins, nor how frequent, my Iron Saturation has stubbornly refused to go into the normal range. Single digit iron saturation values, and a few low double-digit values were the best that could be realised for me, in spite of a very hands on, and highly qualified Hematologist Team, led by Dr. Mary Aplin, and over the past few years, carried out by Ruth Davis, ARNP, at the Department of Veterans Affairs, Lake City, Florida. Guess what happened? Sixteen days after I got out of the hospital, I went to the VA, and had my blood pulled. When the results came back from the lab, not only did I not need an iron treatment, my Iron Saturation Value was 22, in the NORMAL range! Obviously this other problem with the Colitis was causing problems with my blood, over, and above the problems I was having cased by the blood loss from recurring bouts of Crohns Disease.

I thank Almighty God for placing the people at Saint Vincents Hospital, Jacksonville, Florida, in my life, as well as giving them the knowledge, and the skills, to care for the sick. They are His tools for helping people. They use the knowledge God gave them, and He does the healing.  The Hand of God is in all of it.  I am very grateful.

Thanks for stopping by!

mark

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Filed under Crohns Disease, Florida, Health, Jacksonville, Life as a Disabled Veteran, Local, Personal, Spiritual, Veterans Issues