J-pouch Life

The NYTimes publishes articles about “Modern Love” that I often finding touching and interesting take on what relationships are about. I just read this article that is written by a man whose wife became a paraplegic in a car accident. It’s a wonderful story and I think it’s relevant here for two reasons: 1) it’s always useful to put things in perspective — being in a wheelchair sounds much more challenging that an ostomy; and 2) some loving relationships can overcome many challenges, including long and difficult illnesses and disabilities.

Yep, yes, you are right, Mark in pegged jeans. All is good though, he didn't leave the house in those!

Hey!

It has been a busy few weeks, months for Mark and myself. We’ve now been in Athens (ATH), Georgia for two full months!  Seems so much longer, doesn’t it?  We really have taken on a new life here and it is going so well.  The first and biggest thing – we are no longer the “sick couple” – all the new people we are meeting here, NONE of them know things like “Mark had UC” or “Mark has no colon.”  When you’re no longer running to bathroom, missing work, looking like death, you find you NO LONGER need to explain your health.  A luxury of being healthy is not having to talk about your health!

 I’ve been working and adjusting to my new life as faculty at the university, which never has a dull moment it seems. And Mark is working right now doing tech inspections for cars at the dragway(a hobby for him). And then in the next few weeks, he’ll start working with a builder in town on custom renovations of these beautiful historic homes.

We are also getting into our community and he is a House Captain for a program called Hands on Athens.  For one weekend in April, volunteers come together to renovate the exterior of a historic home in the ATH that is owned by a low-income individual who can not repair the home themselves.  It is a wonderful service, and we are glad that Mark’s skills can be useful in the community. He’ll be in charge of the project, and then I’ve got my students involved to volunteer to help implement the changes needed. We’ll send pictures to the blog after the project is complete. 

All in all, just wanted to check in – let you know we are doing really well!  Life without Mark’s colon and rectum RULES!!!!

Here’s the latest for me: We had ended my weekly dilations on February 13th, but the following week things got bad for me again. I have these symptoms that my surgeon is having a hard time figuring out. 1) I can’t control my straining when I have BM’s and my body does this type of heaving thing – very painful; 2) I have pain in my lower abdomen near my pelvic bone; 3) When I have BM’s they burn; 4) I run a low-grade temp (99.5-100); 5) The frequency of my BM’s increases; and 6) My joints in my hands and feet ache. (I think my UC is flaring in my rectum, together with some nerve problems with my pouch – we’ll see . . . )

So on February 20th my surgeon did a biopsy of my rectum and of my j-pouch and dilated the opening to my pouch one more time (for good measure because she was already in there). She also started me on a five day course of Cipro (which I ALWAYS feel better when I take Cipro, which I think is sort of telling about what’s going on). I did feel better until just a few days after I stopped the Cipro and then the symptoms began again.

The results of the biopsy showed that I do not have pouchitis, but that I do have cryptisis in my rectum. I don’t know much about cryptitis at all. My surgeon told me to start doing the nightly mesalamine enemas again, so I am. I’m going to see her for a follow-up appointment tomorrow (the 4th – my birthday!). The only difference I’m noticing with the nightly enemas is that my joints don’t hurt any more at night, which is a good thing. The rest of the symptoms are still there (though the fever thing hasn’t been an issue lately).

I am also scheduled to have a defocography study done on March 27th because my surgeon believes there may be some nerve damage or something in my pouch. Has anyone had a defocography study done before? Apparently they put barium in me and then take x-rays of me while I’m having a bowel movement. I’ll let you know how that goes and what it’s like. I believe my surgeon said that if there is nerve damage that is causing the pain and problems when I have BM’s, that she would need to go in and revise my j-pouch. That would mean a temporary ileostomy for me for a while until the revisions healed. She said there would also be a possibility that the pouch revisions wouldn’t work and I would end up with a permanent ileostomy.

Emotionally I’m hanging in there. The pain is pretty tough to deal with on a daily basis. Depression has reared its ugly head once again for me. So I’ve started seeing a psychiatrist on a weekly basis for meds and counseling, which has been incredibly helpful to me. I’m still hopeful that j-pouch life will work for me! There are just more issues to sort through than I anticipated. Time can’t go by fast enough when you’re trying to find answers either! (Although tomorrow I turn 34, so I’m actually hoping time will slow down just a little bit for me!)

-Abby

Hey Guys-

So my 2nd surgery is coming up pretty fast. It is one week from tomorrow (March 4th). I can’t believe how fast time has gone since my 1st one. I’m not really nervous this one at all, and I’m almost excited, because I know after I get this one, I only have one more to go and then I can be done with all this! =)

Also, as some of you may know, my partner of 2 1/2 years left me a month ago, recently after my first surgery. I don’t know if he was open enough to tell me he couldn’t handle it all, but I figured it was that anyways. Unfortunately we are still living together, because I am on his insurance. And I also have to be nice to him, because I feel that if I’m a jerk (like a wanna be), he holds my future health in his hands and he could drop me off his insurance any time. So now I’m rushing to get through these surgeries before our lease is up, so we don’t have t0 sign a new one so I can keep the insurance. It’s all very frustrating, but I know it will be over soon and I will be happy and healthy in a matter of months and able to find someone that can love me for who I am (no intestine and all!).

My 3rd surgery should be sometime in May and I’m excited for that, because I will then have my bag off in time for summer and I can finally start excerising again and get back into shape. As of now, my plan is to do a trip of Europe. I got sick right out of college, so I never really had any time that I had no commitments. But now, I have no school yet (I plan on continuing grad school in 2010), I have no career (just a part-time job at a restaurant), and I have no relationship to hold me back. My life is totally open and I have the entire world in front of me to do anything I want. But planning this trip is crazy, so if anyone has any ideas of where I should go and what I should do, please let me know. I plan on going for at least 3 weeks, so I can have plenty of time to do alot.

Well, given my status as a male, I’m not really qualified to answer this question, but I’ll give it a shot.

How long after surgery should you wait to have sex (as a women)? I have read 6 weeks on the mayo clinic website, but the surgeon didn’t even mention anything to me.

The “six week rule” is a good one for many activities. As we’ve said before on this site, six weeks is the time after which your tissue (muscle, etc.), when examined under a microscope, is back to its pre-surgery state. About.com’s article on sex after surgery has a number of questions for you to answer to determine if you are ready (physically and mentally) and that might be a good place to start:

• Do I feel like having sex? Do I have the energy at this time?
• Are there certain positions that may be more comfortable than others?
• Do I need to avoid putting pressure on a certain areas, such as an incision line?
• Will we need to take any special measures? Some surgeries, such as vaginal surgeries, may cause dryness and make a lubricant necessary. Other surgeries, such as prostate surgery, may make an erection difficult to obtain and/or maintain, and may require medication or an additional procedure in order to maintain an erection.
• Is there any reason to avoid pregnancy? Does my surgery, medications I am currently taking or my condition make contraception important?

Keep in mind that with the Jpouch surgeries, especially if they are “open” surgeries, your entire core of muscles has been cut through. If it hurts to cough, sneeze, laugh, cry, etc., you might need to wait a while. Also, most surgeons won’t mention sex directly, but when they say to wait however long “before returning to normal activity,” remember that sex is part of that normal routine. Read the about.com article here.

I’m  glad that so many of you wrote in with questions — information on Jpouch surgeries and followups is hard to come by, especially when the information you are looking for is so seemingly random or mundane that you never ask your surgeon. I think I’ll do a separate post for each of the questions you all left as comments last Friday.

Since I have my colon removed, shouldn’t there be some extra space inside me, and/or what fills that space?

Your internal organs are — for lack of a better laymen’s term –  so crammed inside you that even with the removal of your large intestine, some of your small intestine and rectum, there still is no “extra” space. Nothing will be “sloshing” around inside of you, and nothing takes the place of what was there. Think of it like a jack-in-the-box, you can cram the doll in that box, but outside of the box it takes up a lot more space. (Oh, and this doesn’t mean that when they slice you open, your innards pop out like a jack in the box).

Here’s the deal: my wife is a doctor, I hang out with doctors all the time. Sometimes I hang out with nurses and PAs too, but mainly doctors. I’m a web architect and technology enthusiast. So let ‘er rip: medical questions you can’t find answers to on Google? I gotcha covered (and by me, I mean I’ll ask the doctor).

Ideas for the layout of this website? I can handle that, too.

What is the best iPhone app to track your poo? I have tons of recommendations.

Sex? Sex with a “poo-bag”? Sex with a Jpouch? There are a few positions that work best.

Clothes? I found overalls worked the best for me. I actually made my own pair of pants tailored to my appliance. Go on, ask me.

What’s your secret, ‘I ate something wrong today’ and need to ‘re-align the planets’ food? I’ll tell you my answer if you ask. Seriously I have one food that will slow it all down (for me) and let me start over.

What can you drink, alcohol-wise? Coffee? I love coffee, I love wine, I like beer. I have your answers, and I can still put back a few. Ask me your questions.

Why is that one guy on this site so dog-gone funny? Well, I can answer most of your questions.

Leave a comment with your thoughts for this site or questions for me, my doctor-wife, or for anyone else on this site. Then check back on Monday for answers compiled as a post.

Happy Friday everyone!

It’s time for my surgery update! To recap, I had emergency surgery last May, and things did not go well. I had had a temporary ileostomy since then and it took me a long time to feel well enough to go back into surgery. On February 6th, I had my second surgery. The plan was to aim for a j-pouch, but I was told that if things did not go perfectly, a third surgery would be required, and the final surgery could be done about 4 months after the second. I had to stop eating at 6pm on Wednesday and surgery was scheduled for Friday. I also had to drink pico-salax twice, and had to stop drink even clear fluids on Thursday night. I received a call on Thursday night to tell me when I should come into the hospital for surgery. The surgeries for the day are prioritized the night before, based on a number of factors, including whether bowel prep was involved, the length of the surgery, and whether a patient is insulin dependent. Since I had both bowel prep and a scheduled 5 hour surgery, I ended up going in bright and early on Friday morning.

Since my last surgery wasn’t done laproscopically, this one wasn’t done either. After the first surgery, my incision got infected, and it had to be re-opened. It then healed over several months with a packed dressing, resulting in an indentation and a lot of scar tissue. As the surgeon was opening the same incision again this time, I asked him to excise the scar tissue, which he did. He also said that if it got infected this time and had to be re-opened, he would refer me to a plastic surgeon, which made me happy.

I had high hopes to get everything done during the 2nd surgery, but it was not to be. My surgeon later told me that after opening the incision, he almost just closed it back up and left things as they were. He couldn’t even find what was left of my large intestine. His best guess is that the remaining portion was not completely sealed and it created some sort of suction that moved my uterus and ovaries over and entangled them with the intestine. He was not willing to relocate the reproductive organs himself, as it’s not his area of specialty and was concerned about future pregnancies. My partner and I are 95% sure we don’t want children, so this was really not a bit concern for us, but he didn’t know that, and it’s nice to keep the option open. We’re still relatively young (27) and I guess you never know what will happen later. Thankfully, a gynecologic surgeon was nearby, and got pulled in to do that part of the surgery. There was also a hernia and muscle deterioration. The surgery ended up taking 8 hours and the surgeon was concerned that it was too much of a trauma on my body to complete the process. So, my j-pouch has been created and is ready to go, but I have a loop ileostomy. I also have about 40 staples down my mid-line and a small hole where the drain was after surgery. Having the drain removed was definitely the worst part – I will definitely ask for more pain meds before removal if they do that next time. It took maybe 5-10 seconds, but it was surprisingly uncomfortable.

The staples and the rod that is in the loop ileostomy come out tomorrow. I’m told that the removal of the staples isn’t that bad, just like a little prick for each one. I’m looking forward to having the rod removed, as I’m uncomfortable changing the flange with that present. The ileostomy will then go back to being basically as it was before, although it’s a bit bigger than the old one, of course. All in all, I’m not feeling too bad. I’ve been off the pain meds since Saturday and feel pretty good, other than fatigue, which is expected. The surgeon estimated 2 months off, but that seems like too long to me. I think the recovery is easier since I’m not also getting used to using the j-pouch (there’s the upside!).

I had the pleasure of meeting fellow jpouch.net contributor Jamie and her husband Avery this past weekend for lunch. Wow. What nice people. Not only were they friendly and informative, but Jamie even brought me samples of different ileostomy bags, some reading material clearly meant for the exclusive cool crowd (J-Pouchers), and helped describe more of her experiences. I can’t thank them enough, so much so that I haven’t even put her baggy samples on ebay, claiming it belonged to someone famous. It’s great that jpouch.net provides such a strong and supportive community that we were able to talk and share offline. Jamie and Avery, you guys totally rock.
One of my greatest surprises was how normal Jamie was. Seriously, there is no way you can tell that she has any medical situations, let alone an ileostomy bag. Maybe she was totally pulling my leg. For someone concerned about the surgery, this was a huge relief. I was originally imagining something a bit worse.

NOT Jamie at all. Boy was I off.

One thing that came up in our conversation was that sometimes patients get rushed into surgery due to their conditions. During these emergencies, you don’t have the luxury of preparing or planning an extended hospital stay. Those lucky enough to plan their surgeries in advance should plan accordingly. I know I am. Here are my Top 4 Things To Do in the Hospital While Recovering:

4. Write a Novel

Many aspiring authors set out to write the Great American Novel. I was born in South Africa, so that gives me a bit more leeway and creative control in my novel. Aside from the obvious fan-fiction (“What’s Chewebacca doing on the Lost island? Let’s find out!“), I’m going to write my Aquaman novel. Yes, that Aquaman. Something about Aquaman is just awesome, and I figure I’ll have a lot of time to just sort of sit there with a laptop and type while recovering. It was originally a toss-up between pulp romantic novels and Aquaman, but as I was writing this I got hungry for fish sticks, so Aquaman won.

3. Fake a British Accent

Please follow along with the thought process here. I was watching Back To The Future (a great documentary about lightning and Deloreans) when Doc Brown mentioned to Marty McFly something about the Florence Nightingale effect, where nurses fall in love with their patients. Hello. If I play my cards right, my hospital stay will be like a mix between the TV shows “Blind Date” and “Grey’s Anatomy”. If romantic comedies teach us anything, it’s that ladies love the British accent. If I fake a British accent during my hospital stay, chances are good I’ll be engaged by the time I’m discharged. This plan only applies to single people.

2. Entertain My Mum

My mum is going to fly out for a few weeks for the first possible surgery. You know how it goes, it’s the Law of the Mom. While I’m sedated and being a bum in the hospital bed, I’ll have to make sure she doesn’t get cabin fever and pass out from boredom. So I’m planning this out now. Bejeweled on the iPhone? Check. Professor Layton and The Curious Village for the Nintendo DS? Check. Three 200 page Sudoku puzzle books? Check. A Starbucks gift card? Check. Library card? Not yet.

1. Write a Eulogy For My Colon

Hopefully in haiku form.