u/BloodyApostle

Not sure what to do next. Sorry for the long read. For some background context, I was diagnosed at the ripe age of 7. I was on sulfasalazine and had to get colonoscopy/endoscopies about every 6 months or so for about a year and a half. This was short lived due to moving but my mom changed my diet a bit and started using turmeric in meals to help with inflammation. Still had some signs of it for a bit, definitely had some long remission periods as well or at least that’s what it seemed like. Don’t really remember, up until this point, what an actual flare of mine consisted of. Growing up the only noticeable problem was really just some blood in stool about a couple times a year and constant bathroom use after certain meals. Flash forward to now…Age 28.

Been having some of the same symptoms as when I was first diagnosed (according to my mom). Fatigue, some mild stomach pain at times, nausea, and kinda going back and forth between diarrhea and constipation. Also lack of appetite. All of which then also gives me fast palpitations at times! Yay me, I know. That said, saw a GI for the first time in a very long time. When I first met him he was adamant that he wouldn’t even find crohns at all. Okay. Sure. He then put me on 19g of Citrucil (fiber) to get my stuff moving. That was a nightmare btw. Did the colonoscopy/endoscopy thing and found what he thought was celiac disease. Not crohns. Got my results back and I in fact do NOT have celiac disease. However there was mild to moderate CHRONIC inactive COLITIS in the colon and CHRONIC inactive GASTRITIS in my stomach and none of the bacteria that causes that gastritis. Also found a polyp and a small hernia but that’s not what this is about. They called with said results and it was pretty much just a “you have to get another done in 5 years because of the precancerous polyp found and the inactive colitis”. That’s all. I do have to get on a med he wanted me on when we first met that’s supposed to help things move more regularly and he lowered my fiber dosage.

But what do I do now? I guess I thought there would be more too it? Idk. Still have different symptoms as if it’s full kicking somewhere. I guess this is probably more of a rant than anything. Any advice is appreciated tho.

Thought I’d share my experience to ease the minds of those who may be anxious about it! Yesterday I had my first colonoscopy/endoscopy since I was 7 years old. I have a history of Crohn’s disease and had been experiencing fatigue, upper abdominal pain, constipation and diarrhea, as well as nausea. I also have some iron deficiency and gastro cardiac symptoms. Thought perhaps my Crohns was back in full swing so I finally took the jump and went to see a GI.

The preparation part wasn’t as bad as I thought it would be but I was extremely nervous because of all the “horror” stories especially because of the prep I was given. I was given the dulcolax/miralax split prep and had seen people had issues with the dulcolax. However, On Monday night (8pm), I had to take 4 capfuls of the MiraLAX in 16oz of liquid and it Wasn’t too bad! Kicked in about an hour after drinking it.

On Tuesday the real prep began. I started my day with a body armour flash IV powder in 40oz of water and some pineapple jello. After that I alternated between jello and chicken broth. I also alternated water with lemon lime gatorades. 3pm I had to take 2 dulcolax and I can confidently say that I experienced none of the symptoms others have had (extreme bloating, cramps, etc). At 5pm I took half the MiraLAX in 32 oz of Gatorade. Same thing pretty much happened as the night before: took about an hour and I was becoming friendly with the bathroom. I used flushable wipes when it felt necessary and dabbed with toilet paper if I used it. Thankfully, I didn’t have to take the second half (2 more dulcolax/rest of MiraLAX in 32oz) until about 6:30 Wednesday morning so I had some time to sleep my bottom had some rest as well xD.

The only downfall I had was the morning of my procedure when I threw up the second half of the prep and when I realized that I still had MiraLAX left over! Unfortunately it was already past the time I could have anymore liquids (which really sucks when you throw up at the cut off point) and I was very nervous I wasn’t cleaned out properly. While the stool was bright yellow and fairly clear, I was still nervous.

That said…it was TOTALLY FINE!! I was cleaned out just fine! The anesthesia was the best part (I love naps) and the overall procedure took about 30-45 minutes. I will say that I am still feeling a little tired today still but I slept so good last night.

They did have to do a couple biopsies and removed a couple polyps. He said he couldn’t see much evidence of crohns but suspects I may have celiac disease (hearing that while coming out of anesthesia made me concerned that I couldn’t eat my dad’s brisket LOL. Not even sure how that would even correlate but it was the first thing I mentioned. I remember my dad cracking up). I won’t know though until 7-10 days but it’ll be cool to finally get some answers!

Tips:

1. What I feel helped my prep go the smoothest was starting a low fiber diet 3 days before I started my prep.

My instructions were to start it Monday, the day before my prep but I felt more comfortable doing it earlier. I ate mostly chicken and rice.

2. The prep made me feel cold A LOT. Anytime I felt too chilly is when I would have broth. I also wrapped up in some cozy blankets on the couch

3. Speaking of couch, that is where I spent my intermissions and where I slept for the night so I didn’t wake my partner constantly getting out of bed. Laying in a sort of sat up position there also helped with some of the nausea and getting up quicker.

4. For the nausea I would chew peppermint gum! But I assume mints would work as well.

5. Just breathe through it!! Don’t read too much into the horror stories because everybody is different! You got this!