Mom, “bonging and banging”

Another one of Colorado’s beautiful Fall days. Colors are just at the right Peak and I miss the picture posting function. It stopped working when computer crashed due to virus.

Not much difference to report since last posting. I am just trying to breath and eat. I’ve lost more weight since I have so little appetite.  The days run into each other with the same complaint. Pain, nausea, constipation if I take meds, doubling over if I don’t.

The only thing that helps is Marijuana. I still don’t like to smoke it. I don’t like the smell of it, the taste of it so in this sense it’s not enjoyable. BUT, after four puffs, the nausea is gone. A little later, I feel hungry and so I hurry to prepare something that I find interesting enough to eat. It’s a challenge. Portion size has decreased dramatically. Sometimes, I crave ‘junk food’. (Let me state here quickly, that the idea with Baby food did not work. It’s awful. Salt-free, taste-free and just plumb boring. I remember now why babies spit and we unrelentingly scoop up the bits and re-enter it, making plane or car noises. ) I thought I could invent a really good diet for this Diverticulosis but it’s different from person to person.

I decided to ignore my local doc’s advice to forgo Gastroenterologist. I need someone to help me and I need answers. On the last visit he repeated that he thinks it’s the cancer and I should have oral chemo.

Knowing how nauseated I am already this idea is the last thing I want to have reality. Talk about SICK!! There are no Gastroenterologists in this town and so I made an appointment in Grand Junction. Of course, being a new patient, I have to wait until the last of October to get in.

When I wake up, the first thing I check is whether I’m nauseous. The other day, it was really bad and the first thing I did was to go outside and have some marijuana. That stopped the nausea immediately and then I could breath. I experiment with food. Liquid, soft, then more fiber. Doesn’t seem to matter much. It’s really depressing that as a chef I now find food repulsing a lot of the time. When I do manage to eat, it seems to go right through me.

Yesterday, I walked a few blocks to visit the annual Pow-Wow. I sat there and listenend to the strong pounding of the drums and the singing-chanting. Beautiful, colorful regalia of the dancers. Hopefully, today we will see the gorgeous fall colors.

Cameron is getting ready to leave soon and I am torn as I am so used to him being here, especially at night. I know I will miss him terribly but, he has a life and must be able to have some more fun things to do, than listen to me retch.

Missed my grandson’s 9th birthday and the distance seems longer each year. I am delighted by his intelligence, good grades  (looks) and now football. I miss hugging him.

Finally!! Discovery of pain source.

For the last couple of weeks I felt very sick. Nauseous nearly every day, all day. No appetite and still this horrid pain. After these TWO surgeries and now still..

I’d called Dr.’s office in Grand Junction and got the nurse, who said I should make an appointment with my Doc here, as surgeon is on vacation.

The day of the appointment was a particular bad one and I just could not sit still. I was soo sick I was afraid I’d vomit after every second breath. I could not find joy in anything. It was simply too far away. Cameron went with me just in case I’d pass out.

I told Dr. of all these things. We asked if this could be Diverticulitis but dismissed it after he said that I was on a good diet. When I had researched this malady, I was puzzled how I could have this when I walked, ate healthy, etc. Research states that Diverticulitis comes with a ‘typical American diet’.  Little or no fiber, couch potato. That was not me. Dr. was going to rule out Diverticulitis and said, there were so many other things that ‘could be wrong’. Also, that he was not very happy that I don’t have chemo. He gave me a copy of the pathology report whic states the existence of ‘mucinous cancer cells present’.

I remember telling him (and my two other doctors) that ‘if the appendix were on the left side, this would be the very spot of the horrid pain and it feels like someone was stabbing me.’ Also, the lack of appetite.

We were all so concentrated on the scar tissue/adhesions, that everything else went by the wayside. One must remember that I am NOT a doctor.

I went home and even though had doubts, started to research many web sites on this disease. Came across one particular one from University of Freiburg/Germany. What caught my eye and got my attention was the describtion of the symptoms. ‘ Patients will complain of severe pain in the left, lower abdomen. Often they will say: If my appendix were on the left side, this would be the source of the pain. It also feels like someone is stabbing me.’

These two symptoms are the most important to recognize and any good doctor, who listens, will be able to diagnose. Diverticulitis is an Auto Immune disease like fibromyalgia and many others, when there are small pouches in your colon that have filled with fecal matter and has become inflammed. This then, is that excrutiating pain people feel. Nausea, (vomiting) lack of appetite, chills are more symptoms. First thing to do, no fiber! Liquid diet and later soft, easy food. It is manageable with food. The clincher was, that my Vegan diet, which was so tremendously important and helpful for cancer, is mostly the wrong one for Diverticulitis. Too much raw fiber. I couldn’t believe what I was seeing. But, I was so very glad to finally put a name to this and get pro-active. I got stool softeners, antibiotics, pain meds but stopped taking it since it makes me constipated and that hurts a lot.

I got a prescription for an antibiotic for Diverticulitis (‘in case you have it’.) When I took the first pill, I got so sick I ran to the bathroom and …. I felt I was going to faint and called Cameron. He was right there, holding me up and cooling my face and neck. He also heard mecry, late one night when I hurt so much. Role reversal when he held me and soothed me.

We went to the Dispensary, after the doctor’s visit. I was so sick I could barely stand. I bought different things, since I couldn’t eat the oral marijuana stuff due to nausea.

So. Against all earlier protestations, I would start smoking it so it would get into bloodstream right away and deal with this nausea. It took awhile to get the hang of it but then, after only a few puffs, nausea was gone. The world looks immediately brighter and better. 

Now, I am into revising my diet once again to settle the colon. I am working on menu selections for, maybe seven days and then go on from there. In addition of the Vegan diet, which I have these recipes on the blog, I will have some for Diverticulitis as well.

One of the first things I cooked, that really appealed to me, even in this nauseated stage was a home made beef stock. I bought a nice beefy bone (man, is that a turn around from no meat!) and small pieces of stew meat. I also had leeks, carrots, onions, root of celery and green celery, bay leaves, a little tomato paste. I sauteed the meat, veggies, added water and cooked this for over 2 hrs. Then, I strained the broth. I had not been able to eat for nearly three days at this point and was a bit apprehensive that this too, would not be the magical food. I slowly sipped this wonderfully hot broth, that also smelled so good and lo’ and behold, it stayed down. I felt I was warming my whole insides. I had another cup. Wow. I am also adding more Probiotics. I am sure that as time goes on I will have more information how to help oneself.

I came up with ’emergency food’. When I am nauseous, can’t eat much, don’t feel like cooking and need something in my stomach, I will eat Baby food. It’s clean, non toxic and all pureed for the ultimate soft diet.

So. Rather than being done with this blog, it seems that there are more things to help with and share. It’s been over a months since the second surgery and finally I have an answer. I had been in bed most of that time, either dealing with nausea, pain or both. Clutching my heated beenie bag and wishing I were somewhere else. A few times, I just broke down and cried when the pain hit. I’ve not been out of this house, except for grocery trips since I came home. The walls are closing in. I’m fighting depression when I think of the long, long winter ahead. A few friends have stopped by but most of them have not. When I asked where they were, they told me ‘because my son was here that they did not want to interfer’. My goodness.  My son is busy with his coaching and other things and why would that be interference? Hurt my feelings.

 It’s been nearly a YEAR since the odyssee of running down this pain. Surgery was still not in vain because she did cut out a lot of messy adhesions and repaired the urethra. Another couple of days of barely voiding would have shut down everything.

I am trying to go on short walks. I am trying to figure out how to best help myself. I cannot believe that no medical entity picked up on those symptoms!! And so, the saga continues. I am getting bored by it, you may be too.

I thought, when I woke this morning, that this would be a better day but I can feel the nausea starting and sitting in my throat. —-I will stop for today.