- Location
- New Orleans, LA
Hi everyone. As I write this, I'm still recouping from my first diagnostic colonoscopy this afternoon, I haven't even gotten a pathology report yet, but Doc is 100% certain it's Crohn's.
My history leading up to this is a little "strange". For several years I have had very mild GI issues that led me to think it was just IBS, diarrhea never more than a couple of times a day (mostly following stress events and occasionally urgent) and mild abd cramps. About a year ago, I started getting constipated with really narrow stools. It was almost a relief to not have diarrhea! I really never gave it much thought because it was so mild. Fast forward to beginning of October '14, I started having severe lower abd cramping, the kind that I couldn't even stand up straight. I immediately saw my OB/GYN thinking my birth control implants (Essure) were coming out. During the abdominal part of the ultrasound, the tech asked if I had Crohn's. I said, "no". She showed me the picture and there was my colon, on the right side, nice and really inflamed, with a large abscess and a belly full of fluid. Within 3 hours I was seen by a GI and admitted in the hospital on IV antibiotics and CAT scans. Stayed for 4 days, abscess gone and went home on Cipro and Flagyl until a colonoscopy could be scheduled. Can't do one of those all infected
. After about 5-6days on that drug cocktail, I was more ill than I ever had been in my life. Almost passing out from low blood pressure, blurry vision, dizziness. I stopped them immediately, called GI and he agreed with the discontinuation. (I've been a nurse for 22 years, i knew serious side effects). Couple of days later I started feeling fine, still cramping, minimal diarrhea. I had a colonoscopy scheduled for the following week. 2 days before it, more severe pain and fever. Packed a bag and drove to the ER. CAT scan done revealed the abscess was back. The next morning I had a drain put in my belly. What a relief to actually see a that YUCK coming out! I was started on Pentasa and Protonix during this 5 day hospital stay. Drain taken out and discharged on Augmentin, Prednisone 30mg and Percocet 4 days before leaving for a 6 day DisneyWorld trip over the Thanksgiving holiday(my 7 yr old's birthday trip planned for 6 months). I walked Disney for days feeling like gold! FF again to today for (finally!) my diagnostic colonoscopy. I was so ready for it!
Upon waking up, Doc tells me that I had a stricture smaller than a straw opening in the first 50cm of the descending colon, and was not able to pass the scope through it. All of my pain has been concentrated in my cecum and appendix area. Nothing, no pain, on the left side. He said he sees 1 or 2 "head-scratcher" cases a year and of course mine is one of those. I should be much sicker, with more Crohn's-like symptoms according to what my internal gut looks like. He never got to see the area causing so much pain. So, barium x-ray next week, with surgical consult soon after to remove these strictures.
I should mention that after the first hosp stay, I put myself on a low-residue, very low-fiber diet, no veggies, fruit, nuts, seeds, all white bread, rice, pasta and crackers, and drastically cut out white sugar, subbing agave nectar instead, no processed meats, only chicken, beef, pork and some seafood. I can tolerate small amounts of milk and cheese, and real butter doesn't bother me. It's a boring diet, wasn't easy to stay on at Disney, but I'm amazed at the change in me just from the diet change, and the Prednisone, of course. My acne-prone skin has cleared up (I am 43 and was battling acne), hair texture is better and my skin is not so dry and I have energy I hadn't had in years. I didn't realize how awful I was feeling. I'm very aware I have a long road ahead, heck, my right side colon hasn't even been viewed yet, but I remain amazed at what a diet change and some steroids have done, considering the state of my gut.
I know this is long and I thank you who have read this through, and I'm so grateful to have found this forum so early in my Crohn's journey. This seems like a great group.
One last thing, I've always used the motto "It is was it is". I can't change anything that is going on, so I just deal with it. I also suffer from depression and anxiety, but I won't let all of this define me!
Again, thanks for listening and I'll keep updates. Peace and Love!
My history leading up to this is a little "strange". For several years I have had very mild GI issues that led me to think it was just IBS, diarrhea never more than a couple of times a day (mostly following stress events and occasionally urgent) and mild abd cramps. About a year ago, I started getting constipated with really narrow stools. It was almost a relief to not have diarrhea! I really never gave it much thought because it was so mild. Fast forward to beginning of October '14, I started having severe lower abd cramping, the kind that I couldn't even stand up straight. I immediately saw my OB/GYN thinking my birth control implants (Essure) were coming out. During the abdominal part of the ultrasound, the tech asked if I had Crohn's. I said, "no". She showed me the picture and there was my colon, on the right side, nice and really inflamed, with a large abscess and a belly full of fluid. Within 3 hours I was seen by a GI and admitted in the hospital on IV antibiotics and CAT scans. Stayed for 4 days, abscess gone and went home on Cipro and Flagyl until a colonoscopy could be scheduled. Can't do one of those all infected
. After about 5-6days on that drug cocktail, I was more ill than I ever had been in my life. Almost passing out from low blood pressure, blurry vision, dizziness. I stopped them immediately, called GI and he agreed with the discontinuation. (I've been a nurse for 22 years, i knew serious side effects). Couple of days later I started feeling fine, still cramping, minimal diarrhea. I had a colonoscopy scheduled for the following week. 2 days before it, more severe pain and fever. Packed a bag and drove to the ER. CAT scan done revealed the abscess was back. The next morning I had a drain put in my belly. What a relief to actually see a that YUCK coming out! I was started on Pentasa and Protonix during this 5 day hospital stay. Drain taken out and discharged on Augmentin, Prednisone 30mg and Percocet 4 days before leaving for a 6 day DisneyWorld trip over the Thanksgiving holiday(my 7 yr old's birthday trip planned for 6 months). I walked Disney for days feeling like gold! FF again to today for (finally!) my diagnostic colonoscopy. I was so ready for it!Upon waking up, Doc tells me that I had a stricture smaller than a straw opening in the first 50cm of the descending colon, and was not able to pass the scope through it. All of my pain has been concentrated in my cecum and appendix area. Nothing, no pain, on the left side. He said he sees 1 or 2 "head-scratcher" cases a year and of course mine is one of those. I should be much sicker, with more Crohn's-like symptoms according to what my internal gut looks like. He never got to see the area causing so much pain. So, barium x-ray next week, with surgical consult soon after to remove these strictures.
I should mention that after the first hosp stay, I put myself on a low-residue, very low-fiber diet, no veggies, fruit, nuts, seeds, all white bread, rice, pasta and crackers, and drastically cut out white sugar, subbing agave nectar instead, no processed meats, only chicken, beef, pork and some seafood. I can tolerate small amounts of milk and cheese, and real butter doesn't bother me. It's a boring diet, wasn't easy to stay on at Disney, but I'm amazed at the change in me just from the diet change, and the Prednisone, of course. My acne-prone skin has cleared up (I am 43 and was battling acne), hair texture is better and my skin is not so dry and I have energy I hadn't had in years. I didn't realize how awful I was feeling. I'm very aware I have a long road ahead, heck, my right side colon hasn't even been viewed yet, but I remain amazed at what a diet change and some steroids have done, considering the state of my gut.
I know this is long and I thank you who have read this through, and I'm so grateful to have found this forum so early in my Crohn's journey. This seems like a great group.
One last thing, I've always used the motto "It is was it is". I can't change anything that is going on, so I just deal with it. I also suffer from depression and anxiety, but I won't let all of this define me!
Again, thanks for listening and I'll keep updates. Peace and Love!
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