Pouchoscopy Results & 3 Days Left
Published: Mon, 08/28/23
About 10 days ago I had my Pouchoscopy done. Today I met with my GI Doctor to go over the results. I will share these results with you further below.
In my last health update, I had shared with you that I was about to get this Pouchoscopy done, and that I was experimenting with taking CDS. CDS is like taking Chlorine Dioxide similar to MMS. In that Newsletter I had made it to the 4 day mark, and I wasn’t sure if I was going to continue on.
Angela’s birthday was the following day and she was having a party at the house. I decided to stop taking the CDS on that fourth day so I wouldn’t be impacted for Angela’s Birthday party.
I didn’t eat any of the food at the party, and I cooked my regular meal. However, I did have a small spoonful of hummus just to test it out.
The next day I was in pain for the first time in awhile. It wasn’t that bad and it was nothing that I couldn’t handle. I had that pain for a few days up until the Pouchoscopy a few days later.
It was my actual GI Doctor who was going to perform the Pouchoscopy/Colonoscopy. When she came to the table to talk to me beforehand, I told her about the hummus situation. She said that a small spoonful of hummus shouldn’t do something like that. After the Pouchoscopy it hit me that it was probably the Chlorine Dioxide that I was taking.
I had posted my last health update on Facebook, and a person very knowledgeable in this CDS stuff wrote back. I had mentioned that I got a soar throat after taking it. I thought it was a detox reaction. However, this person said that you need to drink a bunch of water afterwards or it could burn your throat. That it when it clicked, and I realized that it probably burned my colon too. I thought that may be the reason I had the pain. I started to get upset because, as usual lol, stupid me, takes it right before my pouchoscopy lol. My God. Classic me, right? I’ll never be taking that stuff again.
So I was in this pain, which I could handle no problem, up until the Pouchoscopy.
After the Pouchoscopy, the pain got worse. I feel like this happened, because the procedure is pretty invasive. They did an endoscopy also, and my throat was also in pain from that.
My new fulfillment center is a 6.5 hour drive from my home. My family and I decided to take a road trip up there and surprise them, which happened to be a week after my Pouchoscopy.
I was still in pretty bad pain, but I decided to go anyhow. I was miserable the first half of the trip, because I was totally going out of my comfort zone. However, it ended up being a life changing experience.
Firstly, a 6.5 drive straight through is no fun. Furthermore, I use a handheld bidet at my home. It’s such an incredible tool, especially for someone like me who had surgery, and is sensitive down there. Using toilet paper in the past with no other help from water, always ended up in a disaster for me with my skin down there.
We get to the hotel room after a 6 hour drive. We just went straight to bed. I felt like I was coughing due to the chemicals on the sheets and blanket. The hotel room felt like a chemical mixing board. The chemicals were super strong in there, and It was absolutely horrible. I was so excited to get to the warehouse the next day that falling asleep was the most difficult thing. I finally got 4 hours sleep straight through and unfortunately woke up. There was still many hours before I had to get up. For 1-2 hours I suffered and worked really hard through focus trying to get back to sleep. I was so pissed lying in bed trying to fall back to sleep, because I wanted to function well at the warehouse, and I couldn’t manage to fall back to sleep. In the end, I finally did fall back to sleep, and I got 6 hours of sleep in total. That was enough for a night like that, and I was happy that I would be able to function properly at the warehouse.
About 2 months ago, I picked up a heavy box at home and I ended up with a bad back for a few weeks. I just felt like it was my usual decrepit body not being able to handle much. Since then I’ve just been adverse to carrying anything heavy. However, when I was at that warehouse, I went nuts in lifting boxes, and looking around it was crazy. I hadn’t utilized my body like that in awhile.
Furthermore, my normal diet patterns were completely off during this trip. I would eat breakfast early, and I ate Whole Foods at restaurants. The hotel had eggs and other things for breakfast. I just ate the eggs both mornings with some added butter, along with some fruit and cream cheese that was there. Furthermore, that first night I was deprived of my regular liquids, ,and I had no way of getting any. I was almost “thirsty” as I was trying to fall back asleep. However, I’ve been in situations like that before in hospitals and can focus/meditate my way through it.
As you can say, I was thrown out of my comfort zone big time. I was absolutely miserable at that point lol. Trying to get work done on my computer through all of this wasn’t as easy and pleasurable as normal.
One would think that my pain would get worse at this point, since I had left in pretty bad pain.
However, the pain completely subsided during all of this chaos, and it feels like that I am in 100% remission now. Maybe I do drink too much liquid like the ER doctors said lol. I was deprived of my normal liquid intake during this trip.
My back was completely fine. I now feel like busting out of my regular comfort zone here, and getting my body back to work here. Maybe I’ll start lifting weights and working out a bit.
My skin without the bidet was completely fine for all of those three days. We ended up sleeping really well after that first night as we were all exhausted. I just feel more happy and more alive from this experience. I think most of our issues as humans are more mental than we think. Getting out of my comfort zone was very helpful.
Now the time in between taking the CDS through the end of this trip was only 2 weeks max. These are the only two weeks I was in pain. Before taking the CDS, I didn’t have pain, and since this trip I haven’t had any pain. Keep in mind, the majority of that pain seemed to be from the Pouchoscooy procedure itself.
It’s kind of like the time where I took the blood tests right after I got the flu. I was barely eating and I was worried that it would impact the results. While they weren’t perfect results, they weren’t too bad either.
So today finally, I met with the GI doctor, who gave me my actual Pouchoscopy/Endoscopy in order to go over the results.
One of the biggest concerns is that I have Crohn’s disease and that they did the wrong surgery. Ulcerative Colitis only impacts the colon (large intestines), while Crohn’s impacts both the colon and the small intestines. Ulcerative Colitis only infects and creates ulcers in the large colon tissues, while Crohn’s does that in both the colon and small intestines. Since the Jpouch is made from a portion of my small intestines, if I had Crohn’s and not Ulcerative colitis, then the Jpouch could get infected with the disease. The surgery I had was supposed to heal the disease. However, if I have Crohn’s the surgery wouldn’t work, because the Jpouch is made up of the small intestines, which Crohn’s infects.
So, she started showing me the pictures of the Pouchoscopy and Endoscopy results. The small intestines were clean as a baby’s butt, and my pouch was completely healthy. However, under the pouch, where it connects to something or other, there is an ulcer that she showed me. However, get this, an ulcer being created right where this connection takes place is completely normal and common with people with JPouches like mine. This is where the pain and inflammation comes from. I do not have Pouchitis.
The other two issues that I perceived was that there was a fistula, and there was a narrowing in this bottom area. The GI doctor said that as long as she could get the scope through, she is not worried about that narrowing. In fact, she said that she thought that I would feel better after the pouchoscopy, because she suctioned stuff out of this area. Now to think about it, I do feel better when I go to the bathroom. In the picture, the fistula looked really small to me. There is nothing to even be concerned about in regards to that at this time. She was worried that there was going to be an abscess that was going to need draining, but there wasn’t.
All in all it looked really good.
Next, I asked her if I could come off of the Humira lol. Slowly and weaning lol.
She said that she wasn’t sure if it was the Humira that is making my small intestines and Jpouch healthy or not. However, she said that if I was willing to take the risk of it flaring right back up, that I could come off of it. However, first she wants me to get a Humira test to see how my levels are doing. I’m supposed to take this test the day of taking the Humira, before I do the actual Humira shot. Furthermore, she wants to see my surgery results of the 2nd surgery where they took down the Jpouch to my anus. She said that those scans will help her determine if I have Crohn’s or not. It’s either the scans of the first surgery or the second one, I can’t remember.
After she gets both of these results in, and if the results are in my favor, she will work with me in weaning off of the Humria slowly through weaning, as those were my desired wishes.
I’m feeling really good about this. Over the many years, things were looking down and impossible for me However, I always kept the faith through it all. In the minds of many, it seemed like an impossibility that I could be healed. Some thought that it would be impossible for me to even get off of Prednisone. I just could not give up, no matter what I was told, or whatever a test said.
I asked her why my inflammation markers were so high. She said that I didn’t have pouchitis, and it could be from this one ulcer that is common. She also said she’s seen way worse inflammation markers than mine.
I’ve also been taking a crazy amount of iron, because I keep becoming anemic. She said that could cause ulcers and told me to stop. I have iron infusions going on right now and she was happy about that.
It will probably be a month from now before I get all of my test results done and in. We can then determine if I am going to come off of the Humira. Most times that I’ve ended up in the ER is when I come down with a virus or the flu. Maybe if I get off the Humira, which suppresses the immune system, I won’t be so vulnerable to them.
Furthermore, I will be getting my next Osteoporosis scan done before the next health update. I told my primary doctor that the reason I have Osteoperosis was due to the long-term use of steroids that I was on. He looked at me like I was crazy. He said that when I first came in to him I was completely malnourished and skin and bones. He told me that is the cause of my Osteoporosis.
I did almost fast myself to death multiple times trying to heal myself “naturally” from this disease.
If you don’t remember, here are some pictures of me at my worst.
Yeah, I guess he’s right about the cause of the Osteoporosis. Can you imagine if that’s already gone now somehow? I’ll keep you updated.
It just popped in my head that I have to ask my GI doctor about the fiber thing though. Why do I go into pain after eating lettuce, broccoli and things like that? Maybe it is that one ulcer? I didn’t think to ask her at the time.
Anyway, will I go back into my comfort zone, or bust out of it? Maybe I’ll fall somewhere in between the two? I hope so lol. Will I get to come off of Humira? If I do, will everything be OK? I hope so lol.
If I do come off of the Humira, and everything is ok, then I am healed lol.
I’ll keep you updated on everything, probably next month once all the results are in.
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Thanks everyone for your support!
Sincerely,
Matt