Gravel Roads Only Create Dust

I found this quote by an unknown author the other day and it has become my new life motto. It seems so fitting for this blog post:

When gravel roads are all you've ever known, your learn to find BEAUTY in the dust.

Decisions Made:

I call Dr. Frech’s office to let them know that I have now lost 7 pounds since being off of the feeding tube and that the additional 14 day dose of antibiotics has not worked. I speak with his Medical Assistant and she informs me that Dr. Frech would like to proceed with doing the colonoscopy and we will go ahead and do the EGD for Dr. Rasmussen to verify there is no shrinking around the surgical anastomosis. This phone call happened on Monday. I speak with the scheduler and they want it done this week and both procedures get scheduled for Wednesday morning. I spend the next day slightly freaking out about doing the prep, but am relieved that Dr. Frech said I can use the feeding j-tube to inject the colonoscopy prep!!

Prep Time:

On Tuesday night, I start the prep at 5:00pm. This prep seems a lot less volume wise compared to some of the other ones I have done. It smells awful and for the first time since I have had the feeding tube, I am grateful for it. I spend the next hour injecting all of the prep followed by all of the water. It only takes about 10 minutes for the prep to take full effect and I get to spend the next several hours very close to the bathroom. I go to bed and try to mentally prepare myself for the next day. I get up at 5:00am to do the second split dose of the prep. The process starts all over again. Inject all the prep over the next hour and spend the next 3 hours near the toilet.

Procedure Time (Colonoscopy and EGD):

I am to check into the hospital at 11:00am for a procedure start time of noon. This means leaving my house at 10:00am. We arrive at IMC at 11:00am and I check into the Endoscopy Department. Then the waiting begins. I don’t go into a prep room until 12:30. Once I get back into a room, I change into a gown, get vitals taken and an IV started. I wait for about another 25 minutes before a tech comes to get me. I then walk back to the procedure room and get onto a gurney, it is now 1:25pm. I meet the Anesthesiologist who recognizes me from my last procedure there and he verifies a few things with me. I joke that it is never good when the staff begins to recognize you. Dr. Frech comes into the room and we chat about what he is going to do and apologizes for being 1 ½ hours behind schedule. He will do the EGD first followed by the colonoscopy and says it should take about 30 minutes to do both. He lets me know all the things he doesn't think it could be but also acknowledges with my case, it could be anything. Dr. Frech also wants to know how the prep went using the J-tube. I inform him it was marvelous to not have to drink it and that was the best way to do it! He informs me that I am his first patient ever that has used the feeding j-tube to do a colon prep! I am now all hooked up. This includes heart monitors, BP, pulse oximeter, and oxygen in my nose. Dr. Frech gives the go ahead to knock me out. I am first given fentanyl and then the propofol. I watch the clock and about 45 seconds later, Dr. Frech comes over and puts his hand on my head and tells me to relax and that’s the last thing I remember. It’s now 1:35pm.

The Results are In:

I wake up back in my room and first look at the clock. Its 2:25pm. Almost a full hour later. The nurse comes into the room and takes a last set of vitals and takes out my IV. I go ahead and get dressed and wait for Dr. Frech to come back and give me the results. He comes in just a few minutes later. Result time. The EGD had all normal results. There is no ulcer or any type of other malformation. There is no closure/shrinking of the surgical anastomosis. The size of the pouch is also the same size; it has not increased in size. However, the colonoscopy results were NOT normal. The first thing Dr. Frech mentions is that my colon is full of bile. We will have to decide what to do the fix this, it may be done by just taking Welchol again but this is not his main concern at this time. The second and more pressing issue he found was that in the left side of my colon he could not get the scope around the first turn. It took him a solid 10-15 minutes to work the scope through (a normal total colonoscopy procedure for him is 12-15 minutes). He says there is some sort of malformation that is occurring that is either twisting/kinking the intestine, shrinking the intestine opening, or surgical scar tissue/adhesions on the outside of the intestine that is forcing the intestine to close/shrink off. He also says that it all makes sense that there is pain in my left side and that the pain seemed to slightly subside after doing the colon cleanse. It could be that when I eat food, it can’t very easily pass through this part of the intestine which then causes pain. He seems very concerned and wants to order more testing right away. He orders a barium enema. I have never had one of these done, but it sounds awful. Dr. Frech then informs me that this test is pretty awful (speaking from his personal experience). He also says that this test requires a colon cleanse. Since I am already all cleaned out, he wants the test done the next day. He says to just stay on clear liquids when I go home and the test will be done the next day. I haven’t eaten solid food at this point for 2 days; luckily I am not even hungry at this point. He says that when he gets the results of the biopsy and the barium enema test he will call me and we will decide what to do next. When the nurse comes back she informs me that there are no openings for tomorrow but they can do the test right now. Dr. Frech gives the OK for this and then I am off to radiology.

Barium Enema:

The nurse comes to get me and I am still a bit loopy which probably helps me deal with this whole situation. A barium enema involves lying on an x-ray table and having a tube inserted into your rectum. They then inflate a balloon to keep everything inside of you. Then a series of barium and air is injected into the tube which fills your large intestine. This creates a lovely crampy and bloating feeling, along with pain and discomfort. They take a lot of pictures as you move around. Once they have the pictures they want, they drain the barium back into an IV bag and move you to another room to take post pictures. The tube is still in the bum for all of this. That’s about all I am going to say about this test. I would have rather been sedated for this test than for a colonoscopy.

Waiting Game:

So now that all the testing has been done, I just have to wait to hear from Dr. Frech. Once he gets all the results, we will hopefully get a game plan together and move forward with it. What that game plan involves, I have no idea. I hate this part more than anything. I hate waiting.

Beauty in the Dust:

Even after all this, I still can find the beauty in this gravel road of a situation. I am so grateful the I can call Dr. Frech my Doctor. He is so caring and compassionate with me. He knows when I need comforting and does such a good job at it. I am grateful that my family is always there for me and that my parents always come and hold my hand. I am grateful that IMC is such an amazing hospital and has some of the most caring staff I have ever encountered. I am grateful for modern medicine and that I am able to have these tests done. I am also grateful for an understanding boss and co-workers that cover me at work. I still have my life and that I am extremely grateful for. I keep telling myself that things could always be worse!

Rendezvous with Dr. Rasmussen

I go to see Dr. R for my follow up on the feeding tube and the weight. At his office, I weigh 130 pounds. That’s only down 2 pounds in a week from my visit with Dr. Frech. Not too bad. We discuss everything that Dr. Frech told me at my last visit a week ago. He agrees that taking out the feeding tube right now is too early. He also wants to wait at least a month and then depending on how I do, he will take it out if I can maintain my weight.

He doesn't seem sold on the idea of the small intestine bacterial overgrowth. He said that for the bacterial overgrowth, you usually don’t have a positive fecal white blood cell test which is what I had. And since I have been on a 14 day dose of antibiotics that I haven’t really responded to yet, he thinks it could be something else. However, he wants me to finish the last 7 days of antibiotics and see if I notice any difference. The next thing would be to proceed with the colonoscopy to see if it could be colitis. I also talk to him about the pain I have in my stomach every time I eat. It could be related to the possible bacterial overgrowth or it could be the anastomosis shrinking again. He suggests doing another barium swallow or an EGD to visually see the pouch. I tell him that I would love to hold off on any more testing and just finish the antibiotics out first. If I have to have a colonoscopy again, I want the scope done at the same time and to just forgo the loveliness of swallowing the barium again. Hopefully none of this will have to be done if my body would just decide to heal and respond to the antibiotics.

He agrees with following the FODmap diet but also agrees with me that this is the diet I am basically already following. He says to just keep eating the way that I am and things with my diet will turn out fine.

I also let him know that Dr. Frech cauterized the tube opening with silver nitrate to try and get rid of the granulomas but the granulomas are still there and it is still oozing. He says he can use silver nitrate again to try and get rid of the granulomas and I tell him no way! That was one of the most awful things I have had done!  He kindly lets me know that when he takes the tube out he will also use silver nitrate to close the opening. Not looking forward to this part at all!!

The plan for now is to continue trying to maintain my weight without doing the tube feeds. Finish out the antibiotics and then proceed with Dr. Frech if any more testing needs to be done. Also add in a probiotic once I finish the antibiotic. I don’t have another appointment scheduled. He wants me to call when Dr. Frech has given his OK to take out the tube and come into the office and he will just take the tube out.

I am slightly feeling like there may be a light at the end of this tunnel!!

Feeding Tube and Weight Update

I have another follow up with Dr. Frech to check my weight and to see how things have progressed with the small intestine bacterial overgrowth. I weigh 132 at this appointment; still 8 pounds shy of my target weight. However, we both agree that the tube may be the culprit of all my pain issues. Dr. Frech still feels that taking out the feeding tube at this point is premature and does not feel like it would be in my best interest to do this. Mainly because he is worried that I won’t be able to maintain my weight and the tube will have to be put back in. But because of all of the pain issues I am having, he decides that we can stop doing the tube feeds and try to maintain my calories and current weight for one month. If I can do this, he will give his ok to take out the tube and then hopefully this will resolve the pain issues. There are a couple things that we are going to have to do trial and error as well.

The first being that since I semi-responded to the antibiotic for the SIBO, he wants to try a longer dose and see if I just need more time on the antibiotic. If I don’t completely respond to the 14 day dose I will have to have another colonoscopy. The reason for this being that since I had white blood cells come back positive in the stool test and I haven’t completely responded to the antibiotics, it could be colitis. So hopefully the 14 day dose will work and I won’t have to have another colonoscopy (cause these are always so much fun).

The second thing we are going to try is the FODmap diet. Dr. Frech thinks that this will help me out and allow me to eat more. Not sure why. I basically follow this diet anyways with all the restrictions I currently have. So I have to just chop out a few more things and then I will officially be on this diet.

I also have some granulomas forming around the tube. This is my body just trying to heal around the tube but the tube won’t allow the skin to come together so the skin starts folding over on itself. He decides that he is going to cauterize the skin by using silver nitrate. This should also help cut down on the drainage from around the tube. I didn’t think much about him doing this. Little did I know how painful this would be. I couldn’t sit for the next 2 days. I either had to be standing or lying down. Sitting down put too much pressure on my abdomen and the area that was cauterized. It caused a horrible burning and pinching sensation. Needless to say, I will never let someone use silver nitrate on my abdomen again!!

So now the plan is to follow the FODmap diet. Continue the antibiotics for 14 days to hopefully cure the SIBO. Continue to focus on eating and maintaining my weight. If I can do all this, then I can have the feeding tube taken out in a month. I see Dr. Rasmussen for his follow up part this week. Whew.