Introduction:
I am a 43-year-old mother of two awesome school-aged kids living in Cleveland, OH. Although I’m not currently employed d/t UC, I’m a clinical counselor specializing in emotionally and behaviorally challenged kids. I was diagnosed with UC December 2011 that became toxic very quickly, so had a temporary colectomy in Feb, 2012. I enjoy long-distance running, downhill skiing, working out watching my kids play sports and perform onstage, and reading.
My Symptoms:
None!! I guess technically, I don’t actually have UC because my colon and rectum have been removed. Let me tell you, I do NOT miss either!!
My Story:
Following a Thanksgiving trip in Denver, I started experiencing frequent bloody diarrhea, overwhelming fatigue, abdominal cramping & nausea the beginning of December 2011. Had a colonoscopy Dec 30 at which time I was diagnosed with UC – pan colitis. Lucky Me. The doc put me on Asacol, which did not work.
Jan 9 2012, I was admitted to a suburban Cleveland Clinic hospital d/t dizziness, fatigue, 25-30 bloody diarrhea episodes per day. They put me on IV steroids which made the symptoms slow down, but not enough to be released and no where near remission. The GI unenthusiastically recommended Remicaid infusions because only about 30% of his patients experienced success with it. I was NOT in that 30%, so GI recommended surgery. Not ready to give up my colon yet, I asked for a second opinion and was shipped to the main campus of Cleveland Clinic. There, they basically monitored my fluids and observed me. The Remicaid by that time actually started to improve my symptoms, was only having 5 non-bloody diarrhea episodes/day, so they released me after spending about 2wks in the hospital. My new GI started me on a drug cocktail that included asacol, prednisone, mesalomine suppositories, and remicaid infusions.
Early Feb, I started again with multiple bloody stools/day. Doc tested me for C-Diff, which was positive, and put me on vacomycin. The new antibiotic did not work and within the week I was up to 20+ bloody stools/day, so was readmitted to Cleveland Clinic main campus, put on IV Flagyl and oral vacomyacin (or was it the other way around? I was so sick I can’t remember), IV steroids and God knows what else. This time, I was ready to part with my colon. Nothing was working. My colon was so sick, it became toxic and had to come out. I had no choice.
Surgery was Feb 15, and not so fun, but it was amazing not to feel so sick anymore!! I would be having j-pouch surgery in a total of 3 surgeries: In the first one I just had, the surgeon removed my colon, left the rectum in as a placeholder and created an ileostomy. In the second surgery, the surgeon would remove most of the rectum and create the j-pouch. In the third surgery, the surgeon would close up the stoma and I would start pooping out of my butt again (yay!) I adjusted pretty well to the stoma, so was released by Feb 22. However, I still felt overwhelming fatigue, and my rectal stump started to release bloody mucus that did not relent with the drugs the surgeon’s office prescribed, so they referred me to another GI. He prescribed a steroid foam, which made it a little better, but didn’t get rid of it completely.
One afternoon in Mid-May, I started experiencing excruciating abdominal pains, so went back into the hospital. The C-Diff had come back which was causing a partial small bowel obstruction. They stuck a tube up my nose & down my throat to suck out the contents of my stomach & small intestines, put me on bowel rest (nothing to eat or drink for several days), and pumped me full of flagyl and vacomyacin again. Ugh. I was released in 5 days feeling MUCH better. Almost normal, in fact.
After a very fun summer with most of my energy regained, I had the second surgery on August 16th which was more painful than the first, but you get some AWESOME pain meds, so it was pretty manageable. I actually healed alot faster after this surgery than the first. By 2-3 weeks I had most of my energy back and was able to do more than lay in my bed & watch HGTV :)!!
It’s been about 6 weeks and I feel just great!! I have a follow-up appt with the surgeon on Oct 3rd to make sure the Jpouch is working, then hopefully schedule the 3rd surgery before the end of the year. It certainly has been a rough 2012, but I am really glad that I was able to have my health restored w/surgery.
This has been the short version of my experiences. If you are interested in more details, I wrote a blog about it: http://lisakapp.blogspot.com/
Where I’d like to be in 1 year:
Working, training for a race, skiing and pooping out of my butt.
Colitis Medications:
I can’t say that any of the UC meds worked for me. I am most grateful to be off the steroids. Even though high dosages of them controlled the UC to a certain point, the side effects were the worst. I was jittery, whacked out, grouchy and lost a bunch of my hair while I was on them, it literally came out in handfuls every time I washed it!!
Now I take multivitamins, probiotics & vitamin D
written by Lisa
I am a 43-year-old mother of two awesome school-aged kids living in Cleveland, OH. Although I’m not currently employed d/t UC, I’m a clinical counselor specializing in emotionally and behaviorally challenged kids. I was diagnosed with UC December 2011 that became toxic very quickly, so had a temporary colectomy in Feb, 2012. I enjoy long-distance running, downhill skiing, working out watching my kids play sports and perform onstage, and reading.
Hey Lisa, awesome story! I’m glad you’re feeling better without your colon and that you are on your way to J Pouch completion. I just finished all 3 surgeries for my J Pouch a little over 5 weeks ago and am pooping out my butt again. Make sure you get some calmoseptine lotion for after your 3rd surgery! It will really help with the butt burn and you can get it at most phamacys over the counter. I wrote my story a few weeks ago called Journey to a Completed J Pouch (I think that’s what I named it) if you want to look at that to see what the final surgery was like for me. Good luck with the final step!
Lisa-
What an amazing story!! What a whirl wind of events, I couldn’t imagine all that happening so sudden. Good Luck with your last surgey!!
Hi Lisa, thanks for sharing your story, I’m going to have my first surgery on the 12 October and i’m looking forward to it :) My Doctor wants to do my J-Pouch in a total of 2 surgeries, i’m not sure why some recommend 2 and some 3, guess it depends alot from person to person. Anyway i’m glad you are doing well.
Per Vork
Our surgery dates aren’t too far apart. I cant say as I am looking forward to it as a week or so ago.
To feeling better and getting my life back YES!, losing my colon? NO!
Am I gonna back down? NO
Never thought I would have to do this. Lots of emotions to deal with. Don’t be suprised if they hit you.
Hi Jill
I totally get what you mean, 5 years ago i was just like you, but now another 5 years have passed with this horrible disease and im just done with it, if losing my colon means get better, then so be it, for over 10 years now i have been a prison in my own house or atleast thats how it feels like, if getting this done means i can go out not worrying about where is the restroom, am i gonna have an accident and just go out and enjoy life with my wife and my hopefully soon to come kids, this is the reason im doing it. :)
i hope your surgery goes well, but keep me posted :)
Hi Lisa! My husband and I are chuckling at the hair loss!!! My hair is everywhere! I have my j pouch surgery oct 4th a 2 step proceedure. Just did the sphincter test and mri today. You have a nice way of wording things. I will be thinking about you tomorrow!
Hi! Jill, how did it go? I hope you are now colon free and feeling better. I had my follow up Oct 3rd, fun, fun, fun!! And Per Vork, it’s been two weeks, how are you doing? Sending healing thoughts your way…
Lisa
Hello, this is actually Per’s wife. :) He asked me to respond to you. Unfortunately, Per’s surgery did not go according to plan. On the 12th, he had the surgery done and the doctor was able to actually create the j-pouch at the same time as the colonectomy. His first words after he came out of surgery was “pain, so much pain”. However, the hydromorphone button slowly started taking the pain away. For the first 3 days, he did quite well and seemed to be improving… his ileostomy was working and it farted and started producing stool. Then, on the third day he took a turn for the worse and ended up in the ICU. Somehow, bacteria from his colon ended up in his abdomen and caused him to go into septic shock. He also became extremely dehydrated and I believe at the lowest, his BP was down to 74/34. He had to have a central line placed in his neck to rehydrate him and get medicine into his system. That night, they pumped over 6 liters of fluid into him. Finally, the next day his BP started to get higher and he seemed to be doing better. They did a CT scan and found a bunch of abscesses in his stomach. He had to have a procedure to have those drained and a “simple drain” put in the right side of his stomach. He stayed in the ICU for 4 days and then he was released back to the surgical unit. Total, he was in the hospital 13 days. They only let him go home because we begged them to let him come home.
That was last Wednesday. So, I’ve been constantly caring for him since then and we have nurses coming to the house to check on him and he has a PICC line where I have to give him IV antibiotics every day.
He has lost a total of 40 pounds since he went into the hospital and as of today, he is 10x’s better than he was a week ago. He is getting stronger every day but still sweats and has a hard time walking around for any period. He is eating normally but finds that he just can’t eat as much as he used to. It has been a hard transition getting used to the ostomy bag… he has a very small stoma and it is starting to recess under his skin a bit. But we have a really good ostomy nurse and he was able to get us some smaller sized convex bags that seems to be working better (cross your fingers for us!).
After all this, we are still positive and hope that him nearly dying better be worth it in the end. It will sound reall corny but the strength of our love and the bond we have really pulls us through and I know he will be well. He does enjoy not having to take any more UC medication and that he no longer has any UC pain. He is also completely off pain pills now.
So, now we’re just waiting for his sepsis infection to clear up and get the drains removed from him. He is due to go back to the doctors again after the hurricane passes. So, hopefully things can only go up from here. :)
Thank you for updatng us! I am so sorry in what you are going through. Sounds like you are keeping positve in looking to the future being well! You are a saint in keeping care of your husband. We could not be where we are today without that bond you speak of. My husband was so supportive in dealing with me in my recent turbulent time and I love him more for it! I was scheduled oct 4th for j pouch surgery but the day before the surgeon cancelled after failing the last test and diagnosed me with crohns too. Please keep us posted and we are here for you too! Hope the Dr appointment goes well! Wishing you both strength and speedy recovery!
Jill
Lisa,
Thank you for sharing your story. Reading about your experience has helped me prepare for my surgery. I’ve dealt with UC and many medications for 9 years. I scheduled my jpouch surgery for January 15th. I’m anxious about taking the plunge but look forward to the future. Praying for a healthy 2013 for you!