To be honest, I never wanted to ever have a colonoscopy. I guess I knew that someday I would because its a great preventative test but I wasn't there yet. That is until all this stuff started with my stomach and bowels. That forced me over the yuck factor, embarrassment, and fear of causing another round of pain from the bowel prep. I had actually begun to look forward to it because I felt I was going to get all these answers and be able to fix things. My husband was a rock through all this.
On the way to my consultation, I noticed that my referral paper said "Basic Cancer Screening", and I thought, "Oh, no. No! This is not a "basic cancer screening". This is an exploratory procedure. We need to look around in there and figure out what was wrong, not just look for cancer. Would it matter? Isn't he supposed to look at everything and tell you everything he see's wrong, or would this be a narrow focus and he only look for signs of cancer. I wasn't sure anymore. All I knew is that I could not see anything that lead me to believe that he was even aware of my stomach issues. He'd have my records right? He'd be able to see my history of diverticulitus, read about my stomach issues under my IBS-D diagnosis, right? God, I didn't know.
He seemed nice enough at the consultation but maybe a bit of communication disconnect. In my desparation to make sure he understood the issues I had been dealing with, I kept referring to my constant lower left pain as my "diverticulitis spot". He kept asking me if I had diverticulitus NOW, and I said I had pain but I didn't think it was infected. He then went on about not being able to do a colonoscopy if I had diverticulitus because I would need to be on antibiotics for 10 days and then I'd need a couple weeks before I made the appointment. Again, I explained that it wasn't "flared up now" (I didn't have a fever or signs of infection) but it did hurt. It almost hurt all the time. I explained my change in eating, the removal of foods, the IBS with constipation that I didn't really agree with, and how nothing seemed to help. He recommended adding more fiber to my diet, drinking more water, and being more active. Ugggg! Then he sent me off with the nurse to schedule my procedure. It would be another six weeks out but at least the ball was moving again and I needed more time to wrap my head around all this prep I had to do anyway. The nurse had made the comment that he had ordered "the full flush" for me. (hahahaha, we laughed) and then I ask what that meant. lol It means that I got the most aggressive colon prep they had. "Probably because of my history of constipation."
History? I don't really have a "history" of constipation. It's sort of new to me, although it had been happening for over a year by this time. I guess that's history, though, so I went with it. The nurse could read the worry on my face and promised me that the worst part of a colonoscopy was the prep and the next time she saw me it would all be a piece of cake from there on out. I didn't find comfort in that.
No, what spurred me on was ANSWERS. I couldn't get a solution to my pain until I had answers. And I wasn't going to get answers without doing the procedure. I worked my brain those few weeks leading up to the actual colonoscopy, encouraging myself, pushing myself forward, preparing as best I could to go in there and follow through. And it worked.
I did the prep pretty good. Drinking so much liquid at once in a short amount of time has always been hard on me. I drink constantly through out the day and even when I'm really thirsty, I wasn't able to take in a bunch of fluids at once. It just always "blew up" on my stomach. Water was actually the worst for me but no one believes that. And it turned out that I needed the "full flush". It took until the very end to get my bowel movements clear. I was almost afraid I wouldn't make it in time and have to reschedule but by the time my fluids were cut off, I was just passing clear water when I went, which was such a relief.
I went in for the procedure with Covid protocals so no one was allowed back with me before or after and they usually ask you to bring someone with you that the doctor could talk to after the procedure because you might be a little out-of-it right after. Now, when I was alert and ready to leave they would call the person to take me home and they would pick me up outside. I'd be given a paper that went over what the doctor found, follow-up care, and instructions, so we could look at it all at home and call with any questions. The doctor would still come talk to me though after and go over things with me so I could ask any questions then as well.
Okay I thought. Here we go. I kissed my husband good-bye and went to have the procedure no one ever wants to have. (I'm sure some people don't mind it, but I sure did.) I kept repeating that I was going to get answers, I was going to get relief, I kept telling myself I had to do this, I was gonna do this. Look at all these people who are also doing this. There were like 4 people around me in the area I was in.
I wasn't in a room (at least yet) like I thought it'd be and only curtains separated me from those on either side. I listened to the nurse giving out the same instructions, asking the same questions, as they went along and got to me. I answered the questions, and stripped down to my bra and underware like required and put on my gown. Open in the back, of course. A nurse came in and started an IV and a few min. later I was wheeled to a small room with everything needed for a colonoscopy. Fun, fun. They got me on my side and I just kept thinking I wish they would put me to sleep already because my anxiety was rising by the second. I answered all the questions, the dr went over the procedure again, and then finally they put me to sleep. Twilight sleep, they called it. Just like being under for surgery on my part though. I went out and woke up, still on my side, back in my curtained off little area with no memory of anything with the procedure. My brain sighed! My mind relaxed and screamed "Its done!" and I slowly worked my way to a sitting position. The nurse was right there, asking me questions, making sure I was waking up okay.
As I sat fully up I felt damp on my left side. The side that had be against the bed. It was a plastic type of bed with a very thin sheet on it so I just thought I had started sweating while I was under. I reached up to feel my head and hair to see how damp it was but it was dry. The nurse brought my drink in and the doctor was right behind her. He told me that he could see when I had had diverticulitis in my sigmoid colon but that I didn't have it now, and that I had an area of colitis, a narrowing of part of the intestine. He said it was inflamed and then asked if I had pain now. Before I could answer he says, "Well you probably always have pain there." and moved on to say he removed 4 polyps, one he didn't like the way it looked or it's size. He said everything went well. I was sort of stuck on him saying I didn't have diverticulitis. I thought he was saying that this issue didn't exist. I wasn't thinking straight though. And through most of my communication with him I kept referring to my divertiCULAR area as diverticulitis and diverticulitis is an INFECTION in the diverticular area and he never corrected me and that was probably why he didn't seem to take me as serious as I had hoped.
I asked him if the colitis was what was causing me my pain and he said yes and I asked him if he could take that part of my bowel out? I told him that I had an uncle who got diverticulitis often and he finally had that part of his bowel removed and said it was the best thing he ever had done. I was to that point! We are almost a year and half into this and it was slowly getting worse. I found myself again asking for something I never thought I would. I was asking for bowel surgery, uggg, what's the prep for that like?
But I didn't have to worry. He saw no reason for surgery.
He hands me my paperwork, full color pictures of my colon and polyps stappled right on top, and says he wants to do my next one in 3 years instead of the recommended 5. We say our good-byes and the nurse tells me I can get dressed and is going to call my husband to pull up outside. I scoot around and drop my feet out of the bed, bunching up the blue pad underneath my bottom. I stand up slow and never got a dizzy feeling and I walked back to my clothes on the chair beside my bed. As I moved I felt my gown was wet and my left thigh was damp. The air was cold when it hit my waist to my thighs on my left side there. I could see my gown was wet but I didn't understand why. It was too wet for sweat. I turned around to look at the bed to see if the blankets or sheet was wet and I was met with a horrible sight. That blue pad that I had been sitting on, that got bunched up when I spun around to get out of bed, it was smeared with what looked like green baby poop. Line after line of it. I was frozen. Honestly frozen. Things were flashing in my head and my body went numb and I just stood there staring for a good 30 seconds. I was wet! WHY WAS I WET! My bed was wet, I had been sitting on poop and I was wet.
After those few seconds I finally started to look around. I had no sink in my curtain walled room. There were no towels. No soap. No wipes. No nothing in there. Not even a cabinet or a shelf. It was the bed and the chair. I started shaking and screaming in my head. Screaming over and over. Ahhhhhhhhhhhh Ahhhhhhhhhhhhh. The only noise to escape my mouth was an open whisper of a sound. All the noise was in my head. At the top of my lungs. I had been laying in nasty dirty water during my procedure or right after. I stayed laying it until I woke up. I sat up feeling wet and I just sat there in it. I sat there on top of a pad full of poop, drinking my soda, talking to the doctor. OMG! Really!!!!! The more I thought about it the more I needed to get out of there. I had to go. I had to get home. I couldn't call someone in to look at that. How disgusting. I didn't want to ask for water or rag because I just felt humiliated. Repulsed. More screaming in my head.
I finally get the strength up to put my clothes over my dirty body and I follow the nurse to the desk to sign out. I threw the covers over the dirty pad when I walked past the bed. I didn't want anyone to see it. I was still just mortified by the whole site. She then walked me to the pick up area and my husband helped me in the car. The nurse talked to him for a while and I just sat in the car staring straight ahead. My husband asked me how I felt and I said, "Numb.", which I knew he would attribute to to the "twilight sleep" but what it really was, was me trying to keep myself together again. To wait until I was away from everyone and then unload what felt like another major work up to failure. I stared straight ahead until we were down the road and away from the place. I opened my mouth to say "When I woke up...." but I didn't get past the wah sound before I just burst into tears. My poor husband. I'm sure at that point he still just figured the stuff they used to put me to sleep was still affecting me and it would take me only a few minutes to get across the most grossness I had ever felt in my life while sitting in the car.
Through tears I told him there was nothing around me to clean up with. That I was covered in all this waste even if it wasn't seeable. That I sat there drinking soda in it, rubbing my face and hair with hand that felt the dampness. I was on the verge of really freaking out because I just didn't have it in me handle this. I didn't know anything like that was possible. I had not read anything about something like that happening to anyone before. I knew they may spray water during the procedure, but it also said they sucked up as well. I also knew they could use air to help them see better and navagate better. You could pass gas afterwards and it was to be expected but no one said anything about waking up wet or anything. Once I was in the shower I began to calm down a little bit and my husband came in to talk about what was said by the doctor about my side and pain. I started telling him that I though he didn't believe my diverticulitus and that he didn't see any reason for a surgery. I told him about the polyps and the colitis and then started to cry again when I told him about being asked about my pain and him answering the question himself and just moving on. Once again dismissing what I was saying and going only on the impression of what he saw.
I went through all of this. ALL OF THIS! for nothing.
I went to two different doctors for help and NEITHER ONE helped me. I left both places with the same unknown issue, the same pain, and no relief.
The next day his results showed up on my patient portal and then I got to read what he had concluded in a bit more detail and with a much clearer head. It turns out that he did believe my diverticulitis because he noted that he could, "see an area where a severe diverticula event had taken place.". SEVERE it said! He confirmed yet again that this area gives me a lot of trouble and pain. He noted that the colitis was so bad near the area that he had to use a pediatric scope. In other words, my bowel was so swollen and inflamed that I had to have a kids size one used to get in there and look around past it. He then focused on the polyps. So what did this mean?
It meant that he knew I had bad spells with diverticulitis, he knew I had an existing swollen area of bowel with pain, and I guess that was it.
No help. No medications to ease the inflamation. No surgery to remove the offending areas. No instructions on how to help limit flare-ups or handle them. No nothing. AGAIN! "Lifestyle changes" was all I got.
On my patient portal, I have an option to write to them if I have questions or conerns and I decided to do that. I wrote and told them how I woke up, what I saw, and my lack of resources or the ablitly to really think clearly. I manage to explain all that and hit my "character limit" before going into to feeling like I wasn't being heard, so I did some editing and managed to squeak in a paragraph about him answering my pain question his self and I sent it off.
To my surprise, I got a call the following week from his office and the lady was very appologetic and said that someone missed the ball and they were going to make sure re-trainning took place. It all sounded good but it didn't really change anything. She then told me that the doctor wanted to call me personally and asked if I'd be free that afternoon. I was and when he called he was again very appologetic and said that the whole shift was being retrained and he was sorry my experience was so hard. Since I had him on the phone and had read his notes with a clearer head I decided to ask him some questions.
I asked him why he needed to use the smaller scope and he said that everyones body is different and anatomy comes into play and some areas were small enough to warrant a smaller scope. I again brought up my pain and that even then it was hurting me and it makes they days I watch my grandson just painful. (I had been watching my grandson when he called.) He then asks me......
"Is is really pain or just uncomfortable?"
I replied PAIN. And he said that it looks like life-style changes would be better suited for me because he didn't see a reason for surgery.
PAIN isn't a reason for surgery?
A regular pain that was getting worse, that was interfering with my life, interfering with caring for my house, my grand son, my husband, my pets. That wasn't a reason for surgery? Nope. None of that mattered. All that matter is what he saw when he was in there, and it wasn't that bad to him. All I needed was some lifestyle changes and I'd be feeling better in no time. It didn't matter that I was down 39 lbs by then, that I had more strength even if I was spending so much time laying in bed. I worked on body parts that I could even when my stomach hurt. My legs were stronger, my arms were stronger thanks in great help to lifting my 18-20 lb grandson all day when I watched him. I worked my core area when I could but to be honest it just always hurt so much that I never pushed it and would just turn and focused on something else. Those kind of lifestyle changes? The ones I've done withOUT feeling any better and only getting worse. That's what you got for me?
I just went through all that to hear about lifestyle changes.Is that really what had happened?
I was just too fat. That's all he saw. Fat people just have all these aches and pains and they just muddle through life with them until there's an emergency and they have it addressed, right? That's the adive. Lose weight and this will all change for you. Take better care of what you eat. Or else don't bother me.
Then he had the gall to tell me to increase my fiber and drink more water, and to try and move for 30 min a day. (face palm)
So I ask, "What if the fiber hurts my stomach? Sometimes it seems to make it worse.", and he told me that I should take extra fiber on the days I can and that movement was probably the more important issue to focus on.
Omg. Here we go again. My movement was already up and would be up even more if it DIDN'T HURT TO MOVE SO MUCH!!" Holy hell! Why was this so hard for them to understand? I'm already doing all these things and I'm succeeding at them, and IT IS NOT HELPING ME!
And after this phone call I just gave up.
I told my husband that I was just going to push through all this pain and see if doing all these things would do more to help if I just lost a little more weight. I began to push through pain and do some light core things like planks or leg lifts. Never anything structured or high impact. Leg squats after I peed. Balancing on one foot to improve my balance and core while I did the dishes. 100 then 200 knee lifts while cooking or watching tv. Trying to always be moving something even when I was sitting, like bouncing my legs or stretching my arms. The pain continued. The air in my bladder happened more often and eventually I went in serch of a new doctor.
It would be end of July, 2021 before I would see my current PCP for the first time. A year and half of uti's and bowel issues were about to come flowing into our first appointment with a mix of excitement, hope, fear, lack of trust and a million and one other emotions.
I'll talk about that next.