As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.
I have tried copious amounts of fluids (I have literally consumed more than one gallon of fluids a day for more than a week and had rock hard stools), different types of fibers in different forms (I’ve lost track between all the types over the years), diet changes, going gluten free (that made things so much worse it was ridiculous), and giving up. I tried Philips Colon Health which didn’t do anything at all, Benefiber which I didn’t think did anything, and I’ve tried to eliminate greasy and fatty foods which has helped me immensely (I discovered I have an intolerance for greasy things, sadly, as I do love those delicious junk foods).
With this GI I have tried:
- VSL #3, which is a high dose probiotic, which I have a hard time remembering to take daily because it’s kept in the fridge. The last time I was taking it daily, however, I also swung all the way to diarrhea, so I am supposed to take it every other day, but that makes it even harder to remember. I’m going to try to get it to daily again, and then maybe switch it so that I take it every other day and then take a kids multi vitamin on the off days or something. I don’t know. Just something to take every single day at the same time so I don’t forget it all the time.
- Linzess. That was a disaster and a half. You can read about that here: 1, 2, 3. Yup. In summary: explosive and violent diarrhea out of nowhere. It caused me to actually have accidents. Luckily, the accidents were in the comfort of my own home and my husband is the sweetest man on the face of the planet and didn’t make me feel embarrassed at all and simply helped by bringing me what I asked for.
- Amitiza. This should have gone a lot better. This came in a lot lower dosages, and was a lot more customizable. I was taking the lowest dosage, and really didn’t think it was doing anything at all, as I was still constipated. I wasn’t having massive stools, but it was still considered constipation. Then, out of NOWHERE I suddenly have diarrhea. It was embarrassing, and it was actually while we were out at the theater (not movies, we were out for our anniversary). Luckily, it wasn’t an accident, I could tell it was coming so I got to the restroom, but I was paranoid all night. I still enjoyed myself but ugh. I called the doc and he thought I somehow picked up gastroenteritis because it was so sudden and I’d been constipated beforehand. He took me off the meds for the weekend, then resumed me at a (barely) higher dose since they hadn’t seemed to be working. After a bit, I randomly get another bought of diarrhea, for one day, then go back to constipation. My nausea starts steadily increasing so that I eventually am forcing myself to eat because I know I need to and I don’t even want to move because I think I’ll vomit. My ever present belly distention and pain starts to get way worse and more painful as well, and I’m not even eating anymore! It’s getting way above 80°F in my house during the day and all I’m eating is soup, ugh. I didn’t actually tie any of that to the medication until I mentioned it to him, because my brain was so hungry I just couldn’t think, and he took me off the medicine. Thankfully, it all resolved pretty fast after I stopped the pills. I’m back to my “normal” nausea and distention/bloating now. (And my “normal” brain fog.)
- Benefiber. I’m supposed to be doing this every day too now, but I have a hard time remembering to mix it into my drinks. It doesn’t even have a taste, I’m just lazy. I’m thinking if I order some pretty iced tea spoons (these Mikasa ones are the ones I want, we have the cocoa blossom flatware), and keep them in a jar on the counter, then maybe I may be more likely to do it? I don’t know. We go through spoons like crazy in my house, for some reason. I also hate getting my finger tips covered in powder or getting them wet with my beverage. Yes, I’m weird. I wonder if my husband will understand this particular oddity. Took me forever to convince him that we needed grapefruit spoons and so far I seem to have actually been more wrong about that one than I’d like to admit… though they have definitely come in handy.
- Align (probiotic). It’s a lower dose than VSL, but it is shelf stable so I was doing a much better job of taking it. It wore off for me though, but it worked for a little while. If I’m going to be traveling, I’ll take it with me. I wish it hadn’t worn off.
I know we haven’t tried a TON of solutions, but my reactions were so violent and unexpected, my doctor is quite worried and confused. He really isn’t sure why my body is behaving the way it is, and he wants to see what the structure looks like to be sure nothing is physically wrong.
Yup, the structure.
That means I get a colonoscopy.
I’m just glad that he doesn’t want to do any sort of exam I have to be awake for first. As I said in yesterday’s post, I have a LOT of trauma, and I am not in a mental/emotional place where I can be awake while someone pokes around down there. I don’t care how many bizarre anuses he has seen, just no. Anyway. I did mention that I have a lot of trauma behind things so hopefully they’ll knock me out before they do any prep work. For my endoscopy they started prepping my mouth before they put me under. I’ll tell the anesthesiologist that they need to knock me out before they do prep work and I’ll mention it again to everyone I talk to, and if they try to separate me from my husband before they’ve knocked me out I may get a little fussy just to ensure I’m at least given an amnesiac first. I don’t like making a scene but I’m scared and I may revert to toddler mode and Dan knows I usually try to be upbeat but he knows I’m absolutely terrified to I don’t think he’ll let them do anything to me that will put me into therapy. I just don’t want to cry. I have never cried during a medical procedure and I don’t want to start now. (Okay, I’ve cried from pain during ONE and I was actually screaming from that one, but that’s it.)
I’ve never had a colonoscopy, in case my previous paragraph didn’t give that away. And since my system runs slow, I get an uber special prep. The normal prep for a colonoscopy isn’t any fun. You can find all sorts of stories about it online. Anyway, long story short is that you normally have to be on a liquid diet for a day then drink about half a gallon of a heavy duty “clear out” solution that washes out your intestines completely. You can imagine how fun that is. “Some Extra-Fun Colonoscopy Prep Tips” by rcb is a hilarious and real look at the process. It’s also pretty much exactly what I expected it to be. But, remember, that’s the NORMAL one. Remember, I get the “uber special prep.”
So what is the uber special prep? I get to do TWO DAYS of a liquid diet! TWO WHOLE DAYS OF NO REAL FOOD WHATSOEVER!!!! YAY!!!!!!!!! (Can you taste the sarcasm dripping from those words? If not, I have failed and I do apologize.) Day one is “full liquids” and “clear liquids.” Full liquids include cream based things like milk and ice cream and soup that doesn’t have chunks in it, while clear liquids are things like jello and broth and juice. Day two is clear liquids only. Day three is the procedure day. Day two is the day I get to start the bowel prep fluid. Remember how I said the normal prep includes half a gallon of a heavy duty clear out? Well, my special prep include a gallon of the heavy duty clear out (aka the bowel prep). The evening of day two I get to drink half of the gallon (by drinking on eight ounce glass every twenty minutes). Then the morning of day three I get to wake up and finish the second half. I have to be sure I’m completely finished drinking everything four hours before my procedure time. My procedure is at 9am, so (since I have to take my medications) I want to be sure my bowel prep solution is completed by 4:45am. The evening before I need to time myself to know how long it took me to finish the first half gallon to be sure I wake up with enough time to finish the second half gallon. This will not be fun and I do not think there will be much sleep that night. At least I’ll be completely unconscious during the procedure.
I’m glad we already have an massive tub of Vaseline, I’m going to need it…