Post-Op: One Year and Eight Months Later….
Posted by: stephlws on: April 4, 2012
Hello, all you beautiful readers!
I sat down today and realized that I completely glazed over my one year anniversary of my j-pouch in August.
Life has changed in a number of wonderful ways.
I am living with my fiance in our own loft in downtown Chicago.
I am working as a nanny for two lovely families.
I am exploring the world of theatre in the Windy City.
In terms of health, I couldn’t be more grateful.
I currently have 3-4 bowels movements a day, the consistency is similar to applesauce most of the time. Sometimes, I only have to go twice in a day! I can easily control my bowels and hold it without much effort or strain.
My diet is all organic nowadays. Staples of my diet include yogurt with probiotics (l. acidophilus being the key component for digestive health), bananas (best superfood of my life! Energy, vitamins, and satisfaction wrapped in a tasty yellow peel), and lots of water! I carry my water bottle with me just about everywhere to stay hydrated and happy.
Cooking has quickly become a favorite past time of mine. The kitchen is something of a “mad scientist laboratory” as my fiance Tim puts it. I thoroughly enjoy exploring and experimenting with food now that I can eat! My diet is pretty well balanced and it definitely has to be. The more vitamins I get the better off I am. It’s not just about taking multivitamins, but actively maintaining a good variety of tasty things to keep you well. Trader Joe’s is the best thing ever! I love food shopping!
If I don’t take vitamins or if I eat something fried or drink beer, I feel like death warmed over. (Most people do without having any history of digestive illness to begin with!) Sure those things are okay every once in a while, but it’s 100% true when they say everything in moderation.
Usually if I eat before 9 pm, I can sleep through the night without having to get up to go to the bathroom. Even if I do, it’s only once.
Butt burn hasn’t been an issue. It is rare that it happens, but when it does, my trusty stash of baby wipes and Desitin do the trick and I find relief in about a day or two.
Physically, I feel great. I can run, jump, dance, swing, play, kick, roll, and every other thing that you can think of.
Intimacy is wonderful. Haven’t had any pain or discomfort or body issue since the surgery. We waited a few weeks before trying to have sex, but even then there weren’t any problems. I am very lucky to have a great man in my life. 
Oh, big note. I do NOT take Immodium anymore. I stopped that just shy of the one year mark, because it was actually giving me constipation. Since I stopped taking it, I have been feeling much better. If I ever get diarrhea, I have a package handy just in case.
Here is what I’m working with these days:
That's all there is. Go Lapro!
That’s all I have to share for now! Actually, wait, I lied.
I would very much like to extend a special thank you to my readers.
You guys are spectacular. Whether you have shared your story with me, or sent words of good will, or popped in to say “hello” or “thank you”, I respect your insight, wisdom, and opinions. I greatly appreciate you coming by to visit and read my crazy story. Most of us, I feel, could write a book about all the ridiculous stuff we’ve had to go through. So thank you, thank you, thank you!!!!!!!!
I recognize more and more every day that everything that has lead me up to this point has created a more resilient person out of me. I see that in so many people who have endured this suffering. In families, in lovers, in friends, in caregivers, we are all impacted by this disease. I know people who are fighting every day. Lots of you are.
It is scary. When medicine doesn’t work, when the bleeding starts in the dead of night, when you are in the ER and nobody can tell you what’s going on. It is unnerving. There is no way to control what happens. Doctors can’t even explain it sometimes. Okay, MOST of the time. So we have to do what we can to educate ourselves. Some people have told me it’s better not to know. That is depressing. Yeah, it is depressing, but it can also be empowering as hell.
I was scared shitless when I came to the reality of “Hey, you might need to have surgery.” I went online and started looking up “j-pouch” and “ostomy” (much like all of you have done to get here I would assume 
). The pictures freaked me out, made me sick, made me cry. The more I read, though, the more at ease I began to feel with the idea. Knowing what complications might arise, understanding how to contend with those issues at home. Remedies, exercises, questions for the doctors. And you know something? That never stops. Knowledge is in fact power and coming in to the office with a notebook in hand and loads of questions IS taking control of your health. Your body. Your life. Even if you can’t control the problems that come up, you can control how to deal with them. Being informed is the best way to be in ANY health situation. It sucks and it’s hard. The greatest part is: none of us are alone. So go ahead: check out the blogs and the websites to the right. They helped me. They might help you too. I am just one person. I can only tell you what happened to me. There are others who are much better suited to the task than I am. All the same, I hope I have been as honest and open and detailed about the experience to be helpful in some capacity to you all. Thank you for allowing me to share with you.
“One day at a time,” we are told. Honestly, is there really any other way to live? We can plan out future out for years and end up in an entirely different place than we expected. Life never, ever rolls the way you PLAN. And, you know what? That’s okay. Because maybe, this new path I’m going down will present me with new possibilities I might not have had otherwise.
So, cheers to you all. Cheers to “One day at a time!” Cheers to good health and living!
Love you all!
Best of health,
Stephanie
Post Surgery: 8 months later!
Posted by: stephlws on: March 12, 2011
My gosh! Has it truly been 8 months since the takedown? It certainly doesn’t feel like it!
Well, the long and short of the my circumstances now:
I currently have: 4-6 bowel movements a day (with control)
My stomach gets upset very easily depending on what I eat so I usually take an acid reducer of a Gas X strip and the bubbliness goes away immediately.
I take Immodium once a day one hour before eating, and probiotics (acidophilus) after breakfast, in addition I also take two gummi multivitamins per day! 
Physically, I feel pretty strong. I feel fantastic and sleep through the night!
Here is what remains of my adventures with colitis:
pretty small, eh? Anyone who is thinking about surgery should definitely ask about laproscopic procedures!
As for my diet, it is pretty balanced nowadays. I eat a good combination of fruit, veggies (although in larger portions these tend to give me diarrhea), protein, and carbs. It’s been really nice to reintroduce foods again and see what works and what doesn’t. For the most part, I haven’t run into any major problems. Every now and then, I get an awful stomach ache but a heating pad and a good night sleep usually fix me right up. I haven’t encountered any blockages, bleeding, or issues since the second surgery and won’t have to return to my doctor until September!
Life is moving forward at a rapid pace, something which I was desperately lacking a couple years ago. I thank my lucky stars every day that I had this surgery and received a second chance at life! It is truly miraculous….
Be well everyone!
Stephanie
Surgery #2: Two Weeks Post-Op
Posted by: stephlws on: August 20, 2010
Things are shaping up quite nicely. I went to visit my surgeon on Tuesday and he is very happy with my progress. He recommended chewable vitamins for the time being (I bought the gummi one a day multivitamins…soooo awesome!) I am also taking two chewable Immodium tablets a day to slow down my bowels. I have been going about 4-5 times daily on average since I started the Immodium.
So it’s going well. I haven’t needed the A&D ointment in a week, no more pain and I’ve stopped taking Advil and I am now sleeping through the night without getting up to go to the bathroom. It’s astounding!
Oh and in other news, I had sushi last night! It went remarkably well. No issues whatsoever. Love it!
Let’s see what else. I go back to see the doctor in four weeks. My incision is scabbing pretty well. I’ll post a picture of the little guy soon.
Tomorrow my best friends Lisa and Josh are getting married and I am standing up in their wedding! Congratulations to them! I’m wondering how I’ll go to the bathroom in my huge bridesmaid’s dress…yikes…that will be interesting. More on that to follow.
School starts on Monday and I am ready to rock and roll! Work is going well. I am beat by the end of the day but ever since I got back on vitamins and have my appetite back I have much more energy. I have been taking the little guy I nanny for out on walks every single day. Good for him, great exercise for me! Win-win scenario really. The more active you are the better things will go! No doubt about it!
That’s all for now!
Best of health to everyone!
Surgery #2: One Week Post-Op
Posted by: stephlws on: August 12, 2010
So here we are, exactly one week after surgery.
Here’s what I’ve learned:
A&D ointment is the best thing for butt burn.
Bananas and potatoes are a key binder of stool.
Walking helps any if not all gas pains.
Heating pads and two Advil will do the trick at night.
Turkey is evil.
The average number of bowel movements (with control) per day as of 8/11/10: 12
The incision is no longer bleeding, but continue to weep just a little. I take off the dressings every day before I shower and replace them afterward to allow the incision some air and for cleaning. I believe the wound is beginning to scab over. There is hardly any pain from this at all.
I started driving two days ago and I’m going rather slow. Bumps are not friendly so every precaution is taken. But otherwise it’s fine.
I go back to work today (I’m a nanny for an 18-month old boy) and I am really excited to see my little friend after two weeks! His grandmother is going to help me out the first couple of days to make sure I am comfortable. She’ll assist with lifting, walking, etc. The family I work for has been most supportive and wish to help me every step of the way in my recovery.
I am beginning to notice a pattern in my bowel movements. I typically go only once during the night. I am going to bed between 9-10. At 3 a.m. on the dot, I’ve been waking up
to use the restroom, but it’s mostly gas. I’ve been trying to eat early dinners to impede the amount of times I go at night. Then I wake up again at 6 a.m. to use it again. In the mornings, I’m usually going 3-4 times. Throughout the day, I will go around 3.5-4 hours without a b.m. at this point in the game. I also usually go once before bedtime.
Holding it can be uncomfortable at times, but it is necessary to train the pouch to expand. The consistency of the stool varies on what I’ve eaten. Food like pasta, rice, potatoes usually allows for more solid movements, anything with milk or cheese I am beginning to notice makes it a little runny. I had a small turkey sandwich with cheese yesterday. Bad idea! I was gassy the rest of the day with horrible pains bubbling through my gut. By the evening everything had passed and I was okay, but I think I will hold off on the turkey until later. I had chicken the day before that and it went well. I had a small slice of cheese pizza and it sat without a problem.
Keep in mind, I am only trying one new thing per day. Otherwise I stick to the tried and true bananas, yogurt, egg, and/or plain cereal for breakfast, some sort of rice for lunch, I’ll snack on some crackers/pretzels in the afternoon, and a pasta/potato with maybe a meat for dinner. Juices are going pretty well. Orange and apple I have tried so far with breakfast. No worries there. I haven’t tried any raw veggies or dried fruits because doctor said it would increase bowel movements or cause issues at this stage.
Slowly and steady wins the race after all.
I’ve had a little bit of problems with butt burn. The high concentration of enzymes in the food are beginning to scorch my tush, combined with the amount of bowel movements. So I clean myself with some little Cottonelle on the go wipes and apply some A&D ointment to the irritated area at least twice a day. It helps almost immediately and really appears to do the trick.
My follow up with the doctor is this coming Tuesday, so we shall see what he has to say. Still no vitamins or calcium yet. Hopefully he’ll let me start back on those soon. I’m a little sluggish in the afternoon without them.
Our bodies are amazing things. This recovery is going smoothly so far. A little bumps along the way (as expected) but far better than the first surgery, of that I am absolutely certain.
New post following doctor’s visit! Wish me luck!
Be well everyone!
Surgery #2 Ileostomy Reversal
Posted by: stephlws on: August 9, 2010
Hello all!
I am pleased to report that coming off the success of Macbeth and a marriage proposal from Tim (I said yes by the way) the second surgery was easy and most welcome in its timing. All of the positive energy in my life and the good health I have had over the last two years with my ileostomy I feel has contributed to what is quickly shaping up to be a rather swift and safe recovery!
Day 1: Surgery. I checked into the hospital at 7:30 a.m. they took me right in and put in and IV asked sme typical health questions and gave me a shot of blood thinner (lovenox) in the abdomen as per my doctor’s instructions. Yuck. Once I got all set up, My mother, father, and fiance Tim came into the room and sat and laughed with me while we waited to see the doctor. Dr. Gamagami showed up around 8:30 and informed me that he would be trying a new method for closing up the ileostomy incision. Typically, doctors utilize a staple elliptical suture to close up the ileostomy. This new procedure (which the doc informed me was only the second patient he’d tried it on) basically takes the incision and makes it a circle instead of an oval and almost tucks everything in so that the infection risks are reduced and the scar is ultimately MUCH tinier than the original procedure! I thought, “well do it! I’m happy to be your guinea pig in this case!”
at 8:57 a.m. on August 5th, the nurse wheeled me out on my little gurney and I kissed my loved ones and my ostomy goodbye!
at 9:01 a.m. I was introduced to the good people who would be assisting in the procedure. The last thing I recall was light-headed and glaring at the nurse and squeaking, “Hey! Did you drug me?” to which she laughed at replied, “Oh, yes, sweetie, you are going to have some good dreams of your new life now.”
I awoke around 11 a.m. to the sound of vomiting behind a curtain. Apparently somebody had not handled the anethesia well. I could feel a dull pain rattling through the lower right side of my abdomen and a dizziness beyond all comprehensin but I knew enough to figure out I was in recovery. Over the course of two hours I woke up quickly and was given ice chips by the nurse on duty who would pop by every now and then and say something to the effect of “Wow, you don’t look like you just had surgery!”
They finally had my room ready around 2. Pretty swanky digs for a hospital and lord was it quiet! Soooooooooo fabulous! Much better than my first surgery for sure! I had a flat screen TV, a nice pull out couch for Tim to sleep on and cabinets and drawers galore to keep my stuff!
I was reunited with my family and was given some Toridol via IV for pain. An hour later, I was up and walking around the hall with Tim and did so about once every hour, taking half and hour to nap. That night I managed to hold down some ice cream and some water before taking some more drugs at 9:30 and turning in for the night.
Day 2: I got up several times during the night to pee as my bladder was waking up and of course them fillling me up with salt water was definitely a reason to get up every couple of hours. They came in to check vitals and gave me some Vicodin around 3:30 a.m. and then to draw some blood around 4:30 a.m. I slept all right but you know you never really sleep well in hospitals. The funniest part of the evening was the fact that at around 12 a.m. I woke with a start and realized my stomach had grumbled for the first time since my surgery! My bowels were beginning to wake up! Throughout the course of the morning, more sounds and rumbling issued from my guts and I continued to walk farther and more frequently with Tim. I held down some yogurt and farted a couple of times. The key to getting out of the hospital at this stage is one for your bowels to wake up and two for you to poop. The doctor came in at around 9:30 a.m. He was incredibly impressed with my progress and told me I could go home! Tim and I looked at each other in disbelief. What? Really? That soon. Although for the last month he and I had been saying to one another, “No more than an overnight stay. This WILL NOT be like the first surgery.” So he sent me off with instructions for care. Namely, that I could not shower and remove the dressings until Sunday. Because of the nature of the wound, he stuffed some dressings inside of it which would be better removed after a couple of days and in a wet situation.
He told me to reintroduce foods slowly and one at a time and did not advise any sort of medication (immodium) or anything but said my body needed to get used to the next circumstances or as Tim likes to call it, “going retro.”
We got home around 11:00 a.m. and the nurses were sad to see me go. “You’re our little rockstar! Good luck!” They were all so sweet and attentive and helpful. Joliet Silver Cross Hospital is an absolute gem of a place and I had an exceptionally pleasant stay there. I have no doubt those things factored into my good recovery.
I didn’t eat much the rest of the day but walked a ton and drank a lot of orange Pedialyte. My best friend and her fiance came over to visit as did my parents and my sister Alex. it was nice to have the company but I was only too happy to drug up on the Vicodin they sent me home with and go to sleep. I slept from about 10:00 to 2:00 a.m. and got up to pee. All of a sudden, I farted and started pooping. It was the strangest thing after two years of an ileostomy to feel. There was no pain and I have had a lot of control in my bathroom visits since then but it was an amusing sensation and I was rather relieved that it was finally moving through. My body has figured out what it needed to do faster than I anticipated. I took some more Vicodin and went back to bed but got up maybe three more times to poop.
Day 3: I got up around 10:00 and felt awful. The Vicodin kicked my butt and I was really weak. I had some yogurt in the morning and sat and slept (not good!) I threw up around 1:00 p.m. because I hadn’t moved very much. After that I drank some water and got back on my feet. I walked for most of the rest of the day, this time tackling stairs and walking in circles around the house while talking to Tim and friends and family. At 6:00 p.m. I felt much better moving and then had some chicken noodle soup for dinner. Everything sat well and I stopped taking Vicodin and switched to 3 Ibuprofen for the incision pain. I pooped maybe 8 times with control that day. It was mostly gas and was really bloody at first but it slowly stopped and began looking like regular stool by the end of the day.
I took some ibuprofen before bed and was able to sleep comfortably on my side surrounded by pillows! Tim called it my pillow brigade. Heating pad also helped for sore back, shoulders, and neck. I slept pretty well (even though I am still growing accustomed to Tim’s snoring )
Day 4: I woke up early this morning around 8 a.m. and prepared to take a shower. I felt sooooooo nasty it was such a tremendous relief. I began to take off the dressings and kinda freaked out. I wasn’t really ready to see the new little wound yet. Tim removed about three inches of dressing from the incision and I allowed hot water to run over it for a few minutes. To my surprise and delight it looked like this:
dime sized maybe even smaller
I feel very little pain and this morning Tim made me a scrambled egg for breakfast and I washed the binder that had been wrapped around my torso for protection. It’s sort of like a girdle and I hate it but I know it’s supposed to keep everything tucked in and safe and provide easier and more comfortable mobility. I tend to disagree but hey, doctor’s orders, right? We walked some more today and I drank some orange juice FRICKIN YUM! and I’ve been snacking on pretzels. I had pooped three times today as of 1:00 p.m. and I am learning which foods will help slow down bowel movements and have been doing some more research and writing down my reactions to food. as I introduce things, I am going to write down how long it takes before I have to use the washroom and how it makes me feel. If something gets irritated, I can always try again at a later time. so I feel awesome have tons of energy and recovering quite well!
The only odd thing at this point is that after I eat something maybe 20-30 after I do, I get an odd gas bubble in my right adbomen where my ostomy used to be. Everyone says this is normal and some people years later still get that feeling every so often. a small price to pay. At the present, I have no trouble urinating or pooping and I have pretty decent control at this point without much discomfort or strain.
I feel so blessed to have had such a successful second surgery and I owe it all to an amazing surgeon and hospital staff, the love of my family, friends, and my fiance Tim and his family. I have such a spectacular supportive group of people in my life and I am entirely too lucky to have them in my life!
I go to see the doctor in 10 days for check up and to see how I’m healing. I shall continue to update as things progress. But for now, I gotta get myself primed and ready for my best friend’s wedding in two weeks and the start of school the week after that!
Thanks to everyone who has followed me on this journey and who has offered their words of wisdom an experience through such a difficult time. we are all stronger together and writing about this has helped me cope with every challenge that has come in my way. I hope it has helped you all too in some capacity, whether it was finding someone to relate to, an experience to draw from, or a source of information and education. I have met so many wonderful people through this blog and I am soooo grateful for what this has given me.
Stay well! Live, long, healthy and happy lives, my friends!
Meet my pillow brigade!
Stephanie's Pillow Brigade (I gave Tim one, don't worry )
Revision of ileo-anal pouch stricture
Posted by: stephlws on: June 9, 2010
Yup, I’m bad. I know it. I just got back from New York with my new guy Tim! I’ve been a little distracted by spring love…so sue me! My humblest apologies.
It’s official. My new surgeon is outstanding! He has far exceeded my expectations and continues to amaze me more than any doctor I have encountered in the last four years. Following my initial endoscopic procedure…way back in April…he discovered that I indeed still had a stricture at the end of my j-pouch, the narrowing of course, he said due to its lack of use. Yesterday morning I went into the hospital for an outpatient procedure to reopen that narrowing by utilizing a stapling method. Everything went well, although my bottom is quite sore (Vicodin has assisted me greatly!) and he said bloody discharge will be normal for a week or two. Now we have to let that sucker heal for about 6-8 weeks. The doctor will have me in for another scope to check out the situation. If he is happy with the way it turned out, we will be scheduling the ostomy takedown! HURRAY!
He seems to think it can be done before the summer is over, but I must admit I am concerned. I am currently in rehearsals for a production of Macbeth as Lady Macbeth (wee!) for summer outdoor theatre. The show only runs the last weekend in July and I am not going to see him until the first week of August. However, my best friend is getting married on the 21st and I am standing up, plus school resumes the last week of August. I am wondering how surgery will fit in. Although everyone keeps telling me my health is priority number one, I don’t want to miss the wedding nor can I afford to miss out on any more school. Now that I’m back I simply cannot imagine life without it. There are many other things to consider as well, but I have been waiting two years for this…how much longer can I wait if the opportunity presents itself?
We’ll see what happens next week during my follow up!
Best of health to all! Happy Summer!
Scope Scheduled for April 2nd
Posted by: stephlws on: March 8, 2010
Greetings, all! Hope everyone is beginning to thaw out of the winter! I continue to feel ashamed for my lack of posting, however, I am happy to report that I have recently gotten back into the theater arena and performed in a delightful comedy of manners entitled Private Lives. In my case, it was incredibly private, as no one in the cast was privy to my medical circumstances (save the fight choreographer and costume designer). It appears that the list of things I can accomplish with an ileostomy continues to grow!
Onto the big news! I was accepted for Charity Care at the new hospital and I have a scope schedule fr April 2nd. The doc wants to take a look at me before the surgery to see how everything looks and to do some biopsies to ensure my good health. He just needs to see what he’s dealing with really. He also needs to see the stricture so we can figure out how to resolve it before the takedown surgery. Fingers are crossed, it’s a step in the right direction! I have fantastic family and friends to thank for their constant encouragement and kindness throughout this process.
Patience is a virtue.
Stay well! Updates following procedure!
Surgery #2 Planning in Progress!
Posted by: stephlws on: January 9, 2010
Happy new year to you all!
I apologize for the lack of updates! It has been a busy holiday season to say the very least, however, it was most gratifying and I was happy to celebrate another healthy holiday with friends and family!
At the recommendation of my latest GI, I have been sent to Silver Cross Hospital in Joliet to see a surgeon about getting my ostomy takedown. My parents and I met with him right after Christmas and all in all, he was an empathetic, intelligent, and generous man. He has been practicing in colorectal surgery since 1993 and is up to date on the the laproscopic advancements! He also agreed to do the surgery regardless of the fact that I am uninsured! YIPPEE! He is going to help me get enrolled in what is called Charity Care and the hospital can set up a payment plan or if I’m eligible the hospital pays for all the bills! (Which is something that was apparently an option at University of Chicago but unfortunately the social worker and the surgeon had no interest in pursuing that path because according to them and I quote, “You can live with the ostomy. You don’t need the second surgery.” According to the surgeon, I need to have the second surgery done since I have the j-pouch already done. There is no point in having the ostomy if the j-pouch is already in place. Only if the j-pouch fails would I have to go back to a permanent ostomy. In any case, he said they were wrong for giving me the boot and that he wishes to remedy the situation.
First thing’s first, they still have to eliminate the stricture in my j-pouch. He wants to take care of that soon because it may require stapling or analplasty (no idea, I need to do more research) to keep the canal open. After it heals (3-5 months) I can have the surgery. This actually works out because school starts after next week and I won’t be done until May. So I can have the surgery over the summer and take my time recovering! He says that I should recover well in spite of the fact that I’ve had the ostomy for over a year. He doesn’t seem to have any trepidation about the procedure at all and expects that I will only be in the hospital for 2 days tops before I can go home (although I am aware that everyone is different and it may take more or less time depending on how my body reacts at first). He said that my bowel movement may be 10-20 a day at first but I must train the j-pouch and allow it to stretch so that it may hold more stool and then he suspects about 6months to a year after the surgery my bowel movements may only be 4-6 a day. He said sometimes even two! I am optimistic about this and can only hope I stay as healthy as I have been. It is a tremendous relief after all this time to find two great doctors who are actually on my side. They don’t look at me as a source of income or another medical number for them to get paid. They genuinely care about what happens to me. It is both touching and restores my faith in humanity.
In the meantime, the pouchitis is gone gone gone and so is the UC!
I am back in school and working as a nanny for a lovely young family with a fantastic baby boy! I am also going to be the lead in a play at my college called Private Lives by Noel Coward! I haven’t done theatre in over four years! I am ecstatic to be back in the game again! Who says that having an ostomy will keep you from doing the things you love? Psssh! Lies! My hope is restored and I have the love and support of my family, my boyfriend, and fabulous friends who have kept me rolling! Thank you all!
I promise to update once I know more about the coming procedures!
Take care and be well everyone!
Pouchitis
Posted by: stephlws on: October 20, 2009
So here’s the latest and the greatest from my doctor.
Turns out that I have been struck by mild pouchitis and severe ulcerative colitis in the last 2cm of my rectum. In order to remedy the situation, the doctor has prescribed Cirpofloxacin (an antibiotic for the pouchitis) and Canasa suppositories and Proctofoam for the colitis. I’m going to see him again on Friday to see how I’m doing.
Three days into the meds and the horrible spasms and urge to have a bowel movement have just about left. I am still bleeding quite a bit and have been taking some Iron to compensate for the blood loss.
For those of you who aren’t familiar with pouchitis…time for a science lesson! Drum roll, please….
Pouchitis: The lining of the ileo-anal pouch (small bowel pocket) has become inflamed (even though I’m not even using it yet). The symptoms associated with it are very similar to UC: diarrhea, abdominal pain, frequent stools (or in my case discharge) and fever and sometime vomiting. about 32 percent of j-pouch patients will encounter pouchitis at some point and the solution is usually antibiotics for two weeks to a month and occasionally the addition of probiotics to the diet.
I’m going to be frank; the pouchitis doesn’t scare me…the colitis does. It’s been over a year since I’ve felt this crummy and it brings back awful memories, especially being at the doctor so frequently in the past month. However, I hope for the best. Fingers crossed all the meds work (I’m taking them religiously, unpleasant as they may be).
Will update after this Friday when I have more news.
Hope everyone is well!
One day at a time…
Posted by: stephlws on: September 30, 2009
So here’s the scoop.
They couldn’t expand the stricture since according to my doctor I was screaming in pain…I don’t remember any of this as I suspected I was knocked out from the anesthetic. However, they determined that my j-pouch is intact and healthy. The little bit of rectum that is left over is indeed infected with what they’re not sure yet. Doc took some biopsies and I’m going to see him on Friday to find out the pathology results. So in the meantime, they gave me from proctofoam (which is basically hydrocortisone cream only in a foam you insert into the anus with an applicator twice a day) to help relieve the bleeding and pain. It’s not bad at all, truth be told. The pressure has subsided slightly and the blood isn’t nearly as visible in the anal discharge. Good signs.
For right now, I have to take it one day at a time. It will all be resolved in the end. Of this fact I am absolutely certain. It’s like Harold B. Melchart once said, “Live your life each day as you would climb a mountain. An occasional glance towards the summit keeps the goal in mind, but many beautiful scenes are to be observed from each new vintage point.”
Hope everyone is well!
