My UC/jpouch journey

THE BEGINNING
It all started in January of 2004, shortly after my 37th birthday. I had a bacterial infection and had to go on an antibiotic called metronidazole. I finished all my antibiotics, and the initial infection was gone, but something was not quite right. I now had bloody diarrhea. I had blood in my stool several years ago, but after a flexible sigmoidoscopy, was told it was due to IBS, irritable bowel syndrome. So, I thought this was a combination of IBS and the antibiotics messing up my system. So I started eating yogurt for the "good bacteria" to get my system back on track. It wasn't really very effective, but then I got what I thought was stomach flu. I felt horrible, severe abdominal cramping and the bloody diarrhea. The cramping got so bad I could not even drink water, or even move without going into severe immobilizing abdominal cramping. Then, I had to go to work, as I came in to work, I had the cramping in front of my team leader. She saw me and immediately sent me to urgent care, luckily it was only at the other end of our clinic. Then, the journey began!! I received IV fluids, and a whole bunch of blood tests and stool tests, then sent back to my PCP at the time, Dr. Garber. She ordered more tests which included a sed rate, which is a test that checks for the amount of inflammation in the body. Normal levels are way below 20. Mine was over 70. My doctor also did an ANA test (antinuclear antibody test) which checks for autoimmunity, it was POSITIVE. So she started me on the steroid prednisone for the elevated sed rate, and did an urgent referral to a GI doctor, Dr. Baumann. Amazingly after only a few days on the high steroid dose, my symptoms improved. I saw Dr. Baumann and he did a flexible sigmoidoscopy, with several biopsies. The inside of my colon was bright red and inflammed (looked like hamburger) and there were several ulcers that looked like canker sores on the wall of my colon. Then the pathology report came back "consistent with ULCERATIVE COLITIS". He explained that it was an inflammatory bowel disease. Explained that it is chronic condition but there are options to keep it in" remission". Little did I know what I was about to endure....


LIFE WITH ULCERATIVE COLITIS
Life had changed, I was constantly struggling to maintain remission. I could be fine one day, and then for whatever reason, I would start to have abdominal discomfort, with the body aches. Then I'd begin the bloody mucousy diarrhea. Along with the diarrhea came the severe urgency, and tenesmus. The urgency involved sudden severe urges to have a bowel movement that would cause me to literally RUN to get there in time. The tenesmus is a SEVERE involuntary need to continue to push everything out of me, and then some. That was probably the most uncomfortable thing about UC!!! I remember sitting on the toilet, sweat pouring out, literally in tears with the feeling that my entire GI tract was trying to get pushed out. It was horrible. Going out anywhere was spent with the anxiety of wondering where the closest bathroom was, and hoping I'd make it in time. There were sooo many times that I didn't, what a horrifying, humiliating experience that was!! I was constantly visiting the doctors office and in 2005, was also formally diagnosed as having Diabetes type 2. So, in addition to diabetic meds, we were trying several different medications to hopefully put me in remission of my UC, with the goal of KEEPING me in remission. However, it was an endless cycle, I"d be in a "flare" and would have to take high doses of steroids to get it under control, then as I tapered off the steroids, would start a new med, hoping to keep my flares under control. We began conservatively with a class of meds called aminosalicylates. I tried sulfasalazine, Asacol and pentasa. Individually, they did not work for me. So then the next class of drugs called immunosuppressants were tried. I tried Imuran, and azathioprine. They caused severe vomiting. Then tried the med 6-mp (mercaptopurine). This med in combination with pentasa seemed to work the best at that time. It would give me a little more time of remission, but never for very long. I would continue with 6mp and pentasa, with intermittient use of a prednisone taper for flares. This was working for a few years. Then came THE flare, the flare that would not improve in spite of very high doses of 2 types of steroids (prednisone and dexamethasone). The flare worsened, and I became sicker and sicker. Then after 2 ER visits, and a few doctor office visits, there was no other option than hospitalization. When my Internist, Dr. Huun, advised this option, I cried. But, I don't know if I was crying out of being scared and not wanting to be in the hospital, or if I cried out of relief...relief that maybe I might start feeling better soon. So, Nov 1st 2007, I had my first UC related hospitalization to Salem Hospital. They started me on IV pain meds, and IV steroids right away. The next day I had yet another colonoscopy/flex sig. This one showed that my UC had definately advanced higher up in my colon. The nurse showed me a pic and I had a huge crater in my colon along with more pus, mucous, inflammation and blood than ever before. The pic was very alarming to me. I was afraid that huge crater would perforate right through the wall of my colon. My doctors tried IV antibiotics as well. Nothing was helping after about a week. Finally, Dr. Baumann, talked to me about further options...this was the first time he even mentioned that scary word SURGERY. But also mentioned the option of a biologic treatment. He mentioned remicade. Remicade is a type of protein that recognizes, attaches to, and blocks the action of a substance in your body called tumor necrosis factor (TNF). It is an infusion that I would receive every 8 weeks in addition to the other meds I was on. I decided to try this as last effort I received my first infusion in the hospital, and was discharged the next day. I had rapid improvement. So, I would be getting remicade infusions every 8 weeks now. At first it was my miracle med, but with time that too began to fail. So, the cycle of flares with intermittent prednisone tapers began again while continuing all the maintenance meds, in addition to the remicade infusions. With that looming concept of running out of treatment options, I began to think about that surgery option. I felt like my life was no longer my life...it was ruled by Ulcerative Colitis. It determined when I could go out, it determined when I could work, or more accurately, when I COULDN'T work. And if UC wasn't controlling my life, I was affected by side effects of the meds/ steroids I was on. (The typical prednisone rages, and "moon face" as shown below.) I began to think that surgery may bring my life back to me again. I began to do research through various internet sites: Healing well.com, jpouch.org and jpouch.net (to name just a few). I communicated with several people through the forums, Facebook, and email. People like me, that have had ulcerative colitis, but had the surgery done. I contemplated all the pro's and con's for several weeks. Then came the day I decided to seriously discuss this option with a doctor. My GI doc, Dr. Baumann sent me to a wonderful general surgeon, Dr. Nair, however he didn't feel totally qualified for this surgery, so he referred me to a highly recommended colorectal surgeon in Portland, Dr. Mark Whiteford. So, I met in consultation with Dr. Whiteford at Oregon Clinic in Portland. I had a basic knowledge about the surgeries available, but learned more details about what was entailed in the surgery and had all my questions answered. The most recommended surgery is the 2 step j-pouch surgery and this is what Dr. Whiteford recommended for me. Then, the surgery journey began....



TIME FOR SURGERY #1
A surgery date was set. On March 3, 2009 I checked into Providence Medical Center in Portland for the 1st step of my surgery. I was so nervous, but hopeful I was about to embark on a journey that would end this HELL called ulcertative colitis. The surgery was to involve removing my entire colon with a "freebie" of removing my appendix as well. Then, using the end of my small intestine, would form the j-pouch (this would act as my new colon someday). Then the doctor would use a loop of my small intestine to form the temporary ileostomy.
So, off to surgery I went.... However things didn't go as Dr. Whiteford had hoped. My small intestine would not pull up to the skin surface without putting too much strain on my intestine and my newly formed jpouch. He didn't want to risk damaging the delicate jpouch, so he closed up the ilieostomy site he had just made. Now, the intention is to use my new jpouch IMMEDIATELY. My surgery was done in one step. When I woke up, Dr. Whiteford and Warren explained what happened and the benefits to this. I thought, "GREAT!" However after several days I began getting sicker and sicker. After a CT scan, it was discovered that I had a paralytic ileus. Basically my intestines hadn't woke up since surgery. So, I had the dreaded NG tube placed. This is a tube that went up my nose, down to my stomach that maintained a constant suction that would drain my stomach contents. I hated it! But, at least I began to feel some better. No more nausea and vomiting. After several days, I was able to have this taken out. Whew! However, something was still not quite right. I had even less control of my bowels than before. It just flowed out. Then, it dawned on me!!! The stool was not coming from my rectum as it should of been, it was escaping from my vagina!! I immediately called my nurse in the room and told her to call the doctor. Dr. Whiteford came to see me at 10pm that night...and sure enough, after a very uncomfortable exam, it was found that I had a vaginal fistula. He told me that I had to have surgery again early the next morning. So, on March 17, 2009, I had my next surgery!!

SURGERY #2
I will never forget waking up from this surgery. I was in so much pain, it was nearly unbearable. I had a huge vertical incision with staples from above my belly button, through my belly button, to below my belly button. I also had a brand new ileostomy with the bag and everything attached to my right abdomen. The vertical incision was the most painful, I could hardly move or even breathe without grimacing and crying in pain. But, then they must of given me some really good pain meds upon arriving to my room, because I was then knocked out for the rest of the day, and the entire next day and night. When I finally woke up again, it was with a start. (Kind of like you do when you wake up thinking you slept through your alarm on a work day.) I immediately asked Warren, "Did I miss a whole day yesterday?" He verified that I had indeed slept through the whole day before. The next several days/weeks consisted of lying in a drug induced state watching tv, pushing my button for pain meds, visiting with family/friends, walking the halls, and trying to regain my strength. I still hadn't been able to eat any food since before arriving for the first surgery. The doctors had to put me on TPN, which is nutrition through an IV. My IV pole was quite the site! Then came the day I thought I was having excess gas in my stomach/intestines. It was getting more and more uncomfortable. I began to ask for mylanta, and gas x. This wasn't helpful, then I was increasing my need for more pain meds. Then, when I had maxed out my allotted dose of pain meds, and was still having increased pain, another CT scan was ordered. This time, it came back with a "mesenteric blood clot". What?? I couldn't believe it, who gets a mesenteric blood clot?? I had never heard of anyone having this in all my years of nursing. So, then came the blood thinners. I was slowly recovering over the next several weeks, however somewhere along the way, my blood count levels fell too low. My doctors wanted to do a blood transfusion. At first I didn't want this, but after a serious talk from one of my favorite (and trusted) nurses, I decided to go along with the blood transfusion. I slowly got stronger and stronger. Then, I had a visit from the ostomy nurse, she had to teach me all about my ostomy bag and how to empty it, and change it. They were teaching me all about life with an ileostomy bag. Then, FINALLY came that glorious day that I had my first meal. Who would of ever thought I would LOVE hospital food, but it was the best food I'd ever had!! Then it finally came...I was discharged on March 30, 2009.

LIFE WITH THE ILEOSTOMY
It felt great to be home, but then came new challenges. The first challenge was trying to live with an ileostomy bag that wouldn't leak. Initially it was quite the challenge, one day I had to change my leaking bag 4 times. I was so frustrated and ended up in tears. But then came my God-send!! My ostomy nurse, Fay Crowell. She was so knowledgeable in ostomies and with her wonderful guidance, we came up with the best way to apply my ostomy bag appliance with the least chance of leaks. It was wonderful! But, don't get me wrong, I still worried constantly about it. I constantly had to physically grab my ileostomy bag to determine if it was time to empty it, and at night, I'd have to wake up at least once to empty my bag. If I waited too long to empty it, I ran the risk of leaks or explosions. There were a few embarrassing times it did leak in public, but luckily was able to get home and change it without anyone knowing. I did have one public explosion. I was at a BBQ gathering and was playing air hockey with my family. Well, I must of leaned against the table because next thing I knew, my bag exploded all over my feet. Now that was one of the most humiliating experiences I ever had. There were several times I'd be sleeping at night, and accidently roll over onto the bag, and this caused leaks and explosions as well. (What a disgusting way to wake up!) I had to be careful of what clothes I wore, For one, I didn't want it to show through my clothes, so I wore big, loose clothing. I could no longer wear jeans comfortably. I found a few sweat pants and leggins that worked well, and only wore big long shirts. Also, I had to be careful of my skin integrity. My skin was really sensitive to the adhesive that had to be used to keep the bag attached to me. So the skin around my stoma and under the appliance always seemed to be just slightly irritated and itchy. Sometimes worse than others. But with experience, I learned the best routine to keep my skin as healthy as possible. The next challenge I had was keeping myself hydrated. I was never very good at keeping myself hydrated before surgery, but now this became a major issue. Now when dehydrated, I'd feel just horrible!! I would begin to have severe fatigue, my heart would race and I'd feel short of breath. Walking across the room was very difficult. Then, the nausea and vomiting would begin. These symptoms landed me in the ER so many times I lost count. But, after one or two bags of IV fluids, I"d be good to go again. The improvement would be astonishing!! I would literally walk out of that ER a new person. This all being said, however, overall the ileostomy was wonderful. I no longer had ulcerative colitis!! I could eat and drink anything I wanted without problems. The only meds I had to take were my insulin, vitamins, and immodium. No more prednisone, no more immunosuppressants!! I felt healthier than I had in years! After my recovery period, I was able to return to work again (and make some much needed $$ again)!!! My next goal was: Takedown surgery!!

AWAITING TAKEDOWN
It turned out that during one of my dehydration ER visits, I had to have another CT scan done. They verified that I didn't have a bowel obstruction, however did have an incidental finding of a right ovarian cyst. Since I was asymptomatic for the ovarian cyst, my pcp recommended that we just continue to monitor it. So, several months later, we did an ultrasound and found it be even larger. It was about 11cm big, which was pretty significant, so he sent me to OB/GYN, Dr. Chong. She did a CA-125 test and recommended surgery to remove my ovaries and uterus. The CA-125 is a test that checks for cancer that luckily came out negative. I was also undergoing testing to see how that vaginal fistula was healing. Dr. Whiteford did a flexible sigmoidoscopy under general anesthesia, and never visibly saw the fistula. We did more imaging tests, such as a barium enema and a pouchogram, but never actually found the fistula. However, these tests did verify that the fistula appeared to now be healed. So, I was also approaching time for the takedown surgery, in which they would close up the ileostomy and I would finally be able to make use of that jpouch to have bowel movements. I inquired whether it would be possible to have both the hysterectomy and takedown at the same time. All doctors involved thought this would be a good idea, the only problem was that I needed to find a doctor in Portland that could do surgery with Dr. Whiteford, since Dr. Chong does not have priviledges at Portland hospitals. Dr. Whiteford referred me to gynecologist/oncologist, Dr. Colleen McCormick. He wanted a gyn/oncologist because they are accustomed to complex, complicated pelvic surgeries, and she came highly recommended.

SURGERY #3
So, on Nov 24, 2009, I checked into Providence hospital again for my next surgery. It turned out that the surgery was very complicated d/t many abdominal adhesions. It also turned out that I not only had a large right ovarian cyst, but I also had a very large cyst on my left ovary as well (this was news to me). It turned out that I could not have the takedown surgery because of all the adhesions, and the fact that the cyst was totally adhered to my jpouch. As they dissected the cyst away from the jpouch, the jpouch tore some. So, Dr Whiteford had to put a stitch in the jpouch. I had alot of bleeding from all the adhesion lysis. I had so much blood loss that apparently my blood pressure dropped significantly while in recovery. I had to have 4 units of blood while in recovery, which I don't remember at all. Then the next day, it happened again. I had 2 nurses, one on each side of me, in a panic, trying to find a blood pressure. This I do remember very well, and was actually kind of scared. They said there was no way I was getting out of bed that day. I had to have 2 more units of blood and a unit of plasma right away. But once my blood issue was resolved and I began the process of recovering, I referred to this surgery as " a piece of cake". The pain and recovery time seemed minimal compared to what I'd already been through. I was discharged after only a few days. But, I did go home with my ileostomy bag still attached. Then, after a short recovery period I went back to work again, and life pretty much resumed again. However, I was seriously anxious to get rid of the bag.

TAKEDOWN SURGERY
Then, came the time I could schedule for my final surgery, the takedown. After allowing enough time for my FMLA benefits to be eligible again for work, my surgery was scheduled for April 6, 2010. I began to get extrememly nervous too. I was so worried about all the "what if's". What if I still have the fistula and have to go through it all over again? what if I have problems with the jpouch? what if I hated life with the jpouch? what if its like ulcerative colitis all over again? All these questions and worries drove me crazy as I approached that final surgery date. Thank God for Xanax. Then, when I finally checked in to Providence at 530am on April 6th, Warren and Tianna kept me fairly calm. However with a long wait in the waiting area, they both dozed off to sleep, and I nearly had a panic attack as I waited for the nurse to come out to take me back to pre-surg area. She saw the panic in my eyes, and quickly got an order for valium. wow, thank goodness for valium too!! Takedown surgery itself went without problems!! I can't tell you the relief I had when I woke up and discovered that I had complete control of all functions. I had minimal pain, and was able to eat and drink ok. I was able to pee without problems, and began having controlled little bowel movements! I was discharged after only 2 days!! I went home to finish recovering. However, after a few days, I began to run a fever of 100.8. Then I started to have more abdominal pain and bloating, and my stools became diarrhea again. My rectum was very sore and painful, this however, was something that I did expect. It is what j-pouchers call the "butt burn". However the pain/bloating in my abdomen and the diarrhea worried me. I was afraid of pouchitis, or even a partial bowel obstruction. But Thank God, after calling my Dr, and obtaining an order for a stool sample, the symptoms went away as fast as they came on. Recovery then occurred very fast!! I have to take my immodium before meals, and at bedtime, and eat metamucil wafers, but overall, feeling "normal" again. I am having totally controlled bowel movements, and can eat nearly everything. I feel great, and ready to go back to work after only about 3 weeks.

CONCLUSION
So I felt this story needed to be told, if even just for myself, so that I can be reminded of just how much I've gone through. I never want to forget all I had to go through to take my life back!! I want it to be known that even with everything I've gone through, I thank God every day for this final outcome. I am so thankful that I decided to have the surgery. It was soooo worth it (Even though there were times I wondered). :o) I also must mention all my family and friends! Everything from day to day care, and worry to just a passing thought, words, or prayer. I don't think I could of endured this journey if it wasn't for the love and support of EVERYONE involved. I have a goal of publishing this story on a blog or at Jpouch.net so others can benefit from hearing my story. Lord knows I read so many other peoples stories during this journey, and it helped so much as a reasource for information, and even just for support. I hope I can provide another resource/support for anyone else that may benefit from my story.