J-Pouch Surgery and Getting Pregnant

When I was told I would only have an 80-85% chance of conceiving on my own after the J-pouch surgeries, I was devastated. I cried for three days. My husband and I had only been married for six months and we both wanted children. I couldn’t believe this was happening to me and questioned what I had done to deserve this.

It took me the three days of crying to come to terms with the fact that I didn’t have any other choice. I was so sick that it was either I had these surgeries or I died. I had to realize that whatever was in store for me I could handle. Whether or not I could conceive on my own or through in vitro fertilization, I was going to have a child. The most important thing was to get healthy first.

I think that for most women facing this surgery, the idea that they may not be able to have children without help is one of the most difficult parts. Also, the decision of whether or not to try to get pregnant with the ostomy before the final take down surgery is a big one as well.

It is important to go into this situation as informed as you can. Know your options. Talk to other women who have tried getting pregnant after the surgeries and find out what their experience was. Talk to your partner about what you will do if you are not able to get pregnant on your own so you are prepared. As scary as the statistics are, it doesn’t mean it’s not possible. Our bodies are made to bounce back. It is important to remain positive and remain hopeful.

Just to prove that it is possible, here is a picture of my beautiful 16 week old baby boy.

PTSD After J-Pouch Surgery

I have come across so many people, clients and others, who have experienced PTSD after the J-pouch surgeries that I felt it was time to finally write about it. This is not intended to scare anyone who may be facing these surgeries. I think that in these circumstances it is best to be prepared from all angles about what may or may not happen before, during and after these surgeries. Being prepared is the best defense because then you can deal with it before it becomes a problem.

When people think about PTSD, the first thing that usually pops into their heads is that it is something that war veteran’s experience. But really take a look at what PTSD stands for: Post-Traumatic Stress Disorder. So it can happen after experiencing any kind of traumatic event…and from my own experiences and from those of the many people I’ve talked to who have had these surgeries, they can definitely be traumatic, especially if you’re not well prepared. Unfortunately, PTSD, depression, anxiety, and all the other crazy emotions that a lot of people feel during and after these surgeries is not something that any doctors to my knowledge talk about…at all. They only talk about the medical side of it, which I get because they’re medical doctors, but at least a mention of the potential emotions that one might experience would be helpful!

So what does this PTSD look like? Mostly, it’s the anxiety and fear of getting sick again and having to go through anything remotely similar to what has already been experienced. I wouldn’t say that I’ve had full on PTSD after my surgeries, but I definitely experience some parts of it. The fear of getting sick again, having to go back to the hospital again or going through another surgery can be terrifying sometimes. Also, being away from my doctors can be really scary. I recently got back from an almost 2 week trip to Europe. The anxiety and fear of something going wrong while I was away and not being able to see my doctors was so overwhelming that I almost didn’t want to go. Another symptom of PTSD after these surgeries is flashbacks. A lot of people that I’ve talked to say that sometimes out of the blue they will have flashbacks of a certain time while in the hospital or during recovery and that it brings back all the emotions they were feeling at the time. Sometimes, just thinking back on everything you have gone through can be emotionally draining. For most people, the period of time from when they were sick enough to need the surgeries until after the takedown is kind of like a “do or die” situation. Nothing else matters during that time other than getting through it and getting healthy again. So for a lot of people, dealing with emotions at that time is just not an option. They just need to be focused on getting through it. So after the takedown, when things are finally starting to get a little bit back to normal, these emotions can come on like a flood…uncontrollable and overwhelming.

So for those of you who have experienced PTSD or are experiencing it after your surgeries know that you are not alone and that this is completely normal. The best thing to do is to find someone to talk to about all the feelings you are experiencing. That way you can find a way to cope with your feelings, accept what has happened, and live your life again. For those of you who may be facing these surgeries, please don’t let this scare you. It is better to be prepared going into the surgeries so that you are better equipped to deal with these emotions if they arise. Even after all the things I’ve dealt with during and after my surgeries, I would still recommend the J-pouch surgeries to anyone. They were life-saving and they have only made me stronger.

Rollercoaster of Emotions

Last Friday I had my annual flex sigmoidoscopy to take a look at my J-pouch. After a whole year of doing fantastic and feeling great I went into this appointment a little nervous but very confident. So after two hours of waiting (no fault of my doctor’s but still very annoying) my nerves kept building. Throughout the exam everything was looking great, until the very end when my doctor found a small piece toward the top of the pouch that was a little inflamed with a small ulcer. One ulcer. Upon seeing that my mind started racing and I started freaking out inside but remained calm so my doctor wouldn’t think I was a crazy person. After he took a biopsy and I got my pants back on, I asked him “what could it be?”, “is it Crohn’s?”, “when will the results be back?” After giving me a smile and trying to calm me down a bit he told me that he didn’t know what it was, it could possibly be Crohn’s but he didn’t think so and not to worry (REALLY?!), and that the biopsy results should be back within a week or two.


So since Friday morning I’ve been able to think of nothing else. I’m trying to remain positive, but having that camera up my butt again and seeing an ulcer again has really played mind games with me. It’s brought back that whole flood of emotions that I felt when I was sick with UC and while I was going through my surgeries. The thing I’ve realized is that those emotions and these experiences will never go away. Even if the results come back and it’s not Crohn’s , this is something I’m going to have to go through every year when I have that exam. The nerves beforehand and the praying to God that nothing shows up during the exam. So it makes me think. For those of us who have had J-pouch surgery as a “cure” for UC, is it really a cure? Possibly it is a cure for the actual physical ulcerative colitis (although not always for those who find out after that they really had Crohn’s all along, or the small percentage who have complications after the surgeries). But emotionally, having these surgeries is definitely not a complete cure. It is something that will always be with us. Those emotions, those memories, that fear. I’m not saying I wouldn’t have had the surgeries. Not that I had a choice, but if I had, I still would choose to have them and I would still recommend them to anyone. They saved my life and gave me a better quality of life. For that I’m definitely grateful. I guess I’ve just realized that for most people it doesn’t end once the surgeries are over. It’s a process. Which is why I think it is so important to take care of yourself both physically and psychologically, during the illness as well as after. I think it’s also the reason I’m so passionate about counseling people with IBD…because I GET IT. And you can’t get all the emotions and fears unless you’ve been through it. So for now, I’m going to do some of the things I tell my clients to do…try and remain positive, deal with my emotions, and since I’m feeling good, enjoy life…and pray that the ulcer is nothing.

J-Pouch Surgery Basics

I know the possibility of surgery is really scary for some people. It definitely was for me. I recently heard from another J-pouch buddy of mine that before she had surgery some people were actually trying to talk her out of it and were telling her that she was weak for having the surgeries. When I heard this I absolutely couldn’t believe it! I know for a lot of people who have the J-pouch surgeries, myself included, it is not an option. If I had not had these surgeries I would have died, plain and simple. Because there is so much misinformation out there and because of the negative ideas that some people have about these surgeries, I wanted to share some information about the J-pouch surgeries.

J-pouch surgery is an option for people with ulcerative colitis as well as for people with FAP. For people with ulcerative colitis, it is typically done when all other medical options have failed, which was the case for me. These surgeries can be done in one, two, or three different surgeries, usually depending on how sick the patient is. In my case, I had three surgeries because I was so sick and malnourished. The first surgery was simply to remove my colon. After my colon was removed, I had a temporary ileostomy, which is a small opening in the abdomen where a piece of small intestine sticks out in order to remove waste into a bag attached to the abdomen. Three months later was surgery number two in which the J-pouch was formed out of small intestine. The J-pouch’s job is to essentially act as a “new colon”. After this surgery, I still had the ileostomy. The third surgery is called the “takedown” and consists of removing the ileostomy and attaching that piece of intestine to the newly formed J-pouch. After this surgery the person will be able to go to the bathroom normally again.

After takedown surgery, the patient will most likely have to go to the bathroom several times per day until their body adjusts to the J-pouch. Some people say that it’s almost like having ulcerative colitis again at first. It does get better though! After the body adjusts, which can take up to one year but is usually much sooner, the average person uses the bathroom around six times per day.

What’s hard about these surgeries is that everyone is different. One person may have a lot of problems and go to the bathroom a lot each day, whereas another person may do great and only go to the bathroom three times every day. You just never know. I think maybe that’s what scares people so much about these surgeries.

In my opinion, J-pouch surgery is a fantastic option for people with ulcerative colitis. Yes, as with any surgery, there are risks and things that can go wrong (obstructions, pouchitis, cuffitis…) and there’s always a risk that the J-pouch will not work as it should. But these risks are rare and for most people, life with a J-pouch is a million times better than life with UC.

Life after J-pouch surgery…for most people, including myself, is great! There are things that are a little different, like going to the bathroom more often, but they are completely manageable and although there are more bathroom trips, unlike with UC you can hold it until you can find a bathroom. For me, there is nothing I can’t eat and nothing I can’t do.

I want people to know that J-pouch surgery is not the end of the world. If you have to have surgery you are not weak and you did not do anything wrong. It is possible to live a normal life and a good life after these surgeries. For more information you can visit my website at www.ccddsupportnetwork.com.

Mourning After J-Pouch Surgery

I have been asked quite a few times "Dr. Martin, why is it that I feel so sad after my takedown surgery? Aren't I supposed to be happy? Is this normal?" My answer...Yes, it is completely normal. I wondered the same thing after my takedown. When I went in for my surgery, I felt so relieved. I thought "Finally I'm going to be done. I can get on with my life, be happy again, and not think about this anymore." About a month later, I started feeling sad and angry and I didn't know why. I finally realized that I was feeling this way because of all of the trauma I had been through in the last year. I mean, being incredibly ill, spending more time in the hospital than out, having three major surgeries, and losing an organ is a lot to deal with! I realized that I was in what I call my "mourning period" and that I just needed to give myself time to deal with everything that I had been through.

So for those of you who may be experiencing the same emotions after your surgeries...you are not alone. You are not crazy for feeling this way. It will get better. Give yourself time to deal with what you have been through. If you feel it would help to talk to someone about what you are going through, do so. Find a support group in your area or a therapist who gets what you are going through. Just remember that this is part of the process and that you will be happy and able to live life again. Sometimes it just takes a little longer than expected.

Travel Tips for IBDer's

I recently went on a vacation to Mexico. It was only the second time I had travelled since my J-pouch surgeries and the first time out of the country since my surgeries and boy was I nervous! I've learned a lot about travelling with my new digestive system so I thought I'd share some tips:

Eat only foods you know agree with you. When you are away from home it is not the time to experiment.

Keep a piece of paper with a list of your medications and your doctors names and phone numbers in your wallet. That way, in case something does happen everything will be in one spot.

Be sure to keep yourself hydrated. Stock your room full of bottled water and Gatorade.

If you have an ostomy, take PLENTY of extra supplies. It’s better to have too much rather than not enough.

Take a break when you need to. If you are on a trip where you are doing a lot of activities, don’t feel like you need to constantly be on the go with everyone else. Listen to your body and take a rest if necessary.

If you are going to a foreign country and you have had surgeries, consider taking your surgical notes with you…just in case.

Double check that you have packed all your medications and bring them in your carry-on luggage in case your checked bags get lost. You don’t want to be without your meds!

If you have a J-pouch, ask your doctor for a prescription for Cipro and/or Flagyl and bring them with you even if you’re not prone to pouchitis…it’s better to be safe than sorry.

If flying with a J-pouch, I find it helpful to eat light the day of the flight and go to the bathroom right before you board.

If you are going to a foreign country always have change in your wallet. Some countries charge a small amount to use the bathrooms.

Know the bathroom situation in every restaurant, museum, store, etc. you go to.

Try to have fun and not to worry!

Appreciating Life

Ask anyone who has suffered with a chronic illness and I bet they'll agree that living with a chronic illness changes one's perspective on life. When things are bad, they're bad and it feels like they're never going to get better. But when things are good, you see life through a different lense than most people.

Although I've lived with rheumatoid arthritis since I was a baby, this new perspective on life didn't really hit me until about a year and a half ago when I started the process of the j-pouch surgeries. I think I didn't feel this way with the arthritis because it's something I have always lived with - I don't know life without the arthritis. When I was diagnosed with ulcerative colitis my thinking was "well, just another thing to add to the list", meaning that my life changed a little bit but not significantly. However, when the last flare started and I began the process of the surgeries, my life was turned upside down. There have been so many ups and downs within the last year and a half that when I feel good I appreciate every second of it and want to take advantage of it as much as I can. I now appreciate the smallest things that most people don't even give a second thought - eating whatever foods I want, taking a shower, sleeping in my own bed, walking my dog, going to the gym. I find myself on a daily basis savoring that piece of chocolate just a little bit longer, or doing just a little bit more at the gym - because I can. And now I appreciate that I can.

I'm in the News!

A few months ago I was asked to be part of a campaign for UC Irvine Medical Center where I had all my surgeries. There are four of us patients featured and the campaign is finally out! You can see my story at:

www.healthcare.uci.edu/surgery/colorectal/ (the "Spotlight" on the right side)

www.ucihealth.com (the pictures on the top rotate and mine is the second one)

My add is also going to be in the Orange County Register on October 31 and The LA Times-OC section on November 7.

For those who don't live in Orange County, my ad should also be on OC Register and LA Times online on October 24th.

I am so excited to be a part of this campaign and to get the word out about Ulcerative Colitis!

Surgery Number 4

So I got home a couple days ago from the hospital after having surgery number 4: Surgery to tack down my j-pouch to my tailbone. Yep, it was as wonderful as it sounds. I will continue this chapter of the saga from my last post so that I don't have to repeat everything. If you read my last post you will know that I ended up in the hospital because my j-pouch twisted. I am one of the lucky but unlucky ones who apparently doesn't grow a lot of scar tissue. See, most people who have the j-pouch grow enough scar tissue to hold the pouch in place. I, on the other hand, did not so my pouch decided to have a little party in my abdomen, doing the twist all over the place.

Anyway, after my last hospital visit, my surgeon wanted to wait a little bit to see if things would essentially fix themselves so that we could avoid this surgery. Well a couple weeks later I was all twisted up again, so back in the hospital I went and this time surgery was a definite. Four days after being admitted to the hospital, surgery was on. When my doctor opened me up he found that my pouch had basically twisted around 360 degrees, pulling more intestine down with it underneath a fat pad that grows behind the intestines. I know, totally weird! So, my doc straightened me out, tacked down a piece of dissolvable mesh to my tailbone, and sewed my pouch in two different places to the mesh. The hope is that by the time the mesh dissolves, which takes about a year, enough scar tissue will grow in its place to hold my pouch in place. Keep your fingers crossed! While he was in there, my doc also revised the scar where my stoma was so that it's now a flatter straight line instead of an indented circle, which I am thrilled about. So once again, I have four incisions that need to heal, but all of them are incisions that were used in previous surgeries: Two laproscopic incisions, the stoma incision, and the bikini line incision from my second surgery.

I am now home recovering after 12 days in the hospital because my intestine decided to stay asleep longer than it should have and I'm hoping that this will be the last chapter in the J-pouch Saga. I've got some work ahead of me since from the time this mess started until now I've lost almost 15 pounds, so I have a lot of weight to gain, once again. I'm working my way up with food, hoping to try some plain pasta tonight and hoping to be eating some baby back ribs and french fries in a couple weeks!

Another Year, Another Hospital Stay

Yesterday I got home from a 7 day stay in the hospital because my j-pouch twisted. Yep, you read correctly, it twisted. Yet another anomaly that I get to experience. My docs were able to untwist it but I'm still not feeling normal, so we'll see how things go. Surgery to tack down my pouch will probably be in my near future. Le sigh. Anyway, those who have been lucky enough to stay in the hospital know how much it sucks and while I was there I created my list of the suckiest things about staying in the hospital. Here goes:

1. People staring at you like you're an alien when you walk the halls.
2. Docs and nurses watching/waiting for you outside the door while you are going to the bathroom - can you say performance anxiety?
3. For the next year, every time you see someone, "How are you doing?", "You look good", and my personal favorite "Your color looks good".
   
4. Feeling dirty and disgusting
   
5. Everyone you know, plus their friends and family, plus their friends and family, ect. knowing your business.
6. Feeling like you are part of some science experiment gone wrong when all the docs are standing over your bed.
7. Which is worse? NPO or cafeteria food?
8. "Have you had a BM yet today?" "Yes" "Next time don't flush I want to see". Is there any question as to why I kept "conveniently" forgetting to do this? Yuck.
9. IV lipids
10. Being woken up every few hours for vitals, IV fluid changes, yatta, yatta, yatta.
11. NG tubes
    
    

Needless to say, I'm still a little bitter :-)

We Did It!

Well, my j-pouch and I made it to Massachusetts and back with absolutely no problem! In fact, we did great!

We walked all over Boston.

We ate Bobby Flay's favorite sticky bun at Flour Bakery and Cafe. Yes, it was as delicious as it looks. In fact, I'm drooling right now just thinking about it.

We stayed out late at a bar and had a few drinks.

We watched my brother get married. *tear*

We partied the night away at the reception.

We met George the mustache cat.

And we kicked ass at Baggo.


I'd say it was a successful trip!

8 Things to Avoid When You Have IBD

There are so many things to do and not to do when you have IBD (inflammatory bowel disease). In my experience, these are the top 8 things to avoid when you have IBD:

1. Stress - While there is no known cause of IBD stress can definitely be a trigger. Now you are probably thinking "How in the heck am I supposed to avoid stress? That's impossible!" While I know it's hard to avoid stress completely, reducing stress can be a great benefit to you. Everyone has different ways of reducing stress. For some, including myself, it's by exercise. Others reduce stress by reading or watching TV. Find something that works for you.

2. NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) - This is a big one. Many gastro's advise their patients to avoid long-term NSAID use because they can cause serious adverse affects in people with IBD. They can cause ulcers in the stomach and first part of the small intestine, and they can worsen bleeding and inflammation. I have firsthand experienc with this, and let me tell you, it's not fun.

3. Certain Foods - Now this varies from person to person. While certain foods don't cause IBD they can trigger a flare or cause discomfort and worsen diarhea. It's important to find what foods work for you and what don't. While you are trying to figure this out, keep a food journal to help you out.

4. Dehydration - It is so important to be aware of dehydration when you have IBD. Because of all the lovely bathroom trips that come along with flares, it's essential to make sure you are getting enough liquid every day.

5. A sedentary lifestyle - This is going to vary from person to person, and it's also going to depend on whether you're having a flare or not. For me, before I had surgery, I was very active. I went to the gym 3-4 times a week and also did yoga. When I had a flare though, I couldn't do as much and cut back on most of my exercise until I felt better. Find what works for you. Some sort of exercise is important though, not only because it's good for your body, but because it's good for your mind too. When you exercise, your body releases endorphins which not only put you in a better mood, but help with stress as well.

6. Malnutrition - When you have IBD and are having a flare, it is really easy to become malnourished. You don't have an appetite. You are in pain. You are constantly running to the bathroom. Because it is so easy to become malnourished it is essential to get the nutrients you need in some way. It helps to eat small meals throughout the day. Find nutritional food you can tolerate. Drink protein drinks. Take supplements in pill form.

7. Isolation - Having a disease like Crohn's Disease or Ulcerative Colitis can be very isolating. People who haven't experienced these diseases just simply don't understand what it's like. Not only that, quite frankly, it can be embarrassing! However, isolating yourself will only make things worse. Find an IBD, J-pouch, or Chronic Illness support group. I go to one, and let me tell you, it is so helpful to talk to other people who understand what you are going through!

8. Smoking - Especially if you have Crohn's. People who smoke, or who have smoked in the past, have a higher risk of developing Crohn's than those who don't smoke. Crohn's disease patients have a higher risk of relapses and repeat surgeries. Interestingly enough, in patients with ulcerative colitis, nicotine has been shown to have a positive short-term effect on those having a flare. I AM NOT TELLING YOU TO SMOKE PEOPLE! I'm just saying, there is research going on now on the effectiveness of nicotine patches in controlling flares in patients with UC.

Well, that's all I've got for now...stay tuned for more.

The Beginning...

If I had a dime for every time I have heard the phrase "Your color looks good" in the last year I think I'd be rich! Since this is my first post, I guess I'll start with a little background:

My story began about 3 years ago when I was diagnosed with ulcerative colitis. I was 25 years old. Since then, life has been a little bit of a roller coaster; mostly good, with the last year being the most challenging time of my life. So that I don't go on and on I'll just give you the short version (well at least I'll try). On April 14, 2009 I was admitted into the hospital with a flare that I had been trying unsuccessfully to get under control for the last 2 months. By that time I had lost almost 30 pounds (I started at only 108 lbs so losing 30 pounds was not a good thing!) and was extremely ill. On May 5th, I had my first of 3 surgeries, which was a total colectomy (in layman's terms, I had my colon removed). Yes, you can live without a colon! For the next 5 months I was to live with a temporary illeostomy and endure 2 more surgeries. If you don't think that's bad enough, wait there's more! After my first surgery, I had lost so much weight that a fat pad that allows food to pass into your stomach closed and I had to have a tube down my nose into my stomach for 3 weeks so I could "eat" through the tube. Oh, I almost forgot the two blood clots from picc lines and the three months of blood thinners I'd have to take because of those suckers. How could I forget that?

Three months later was my second surgery where the doctors created my J-pouch, an internal "pouch" made out of my small intestine that would essentially act as my new colon. I know... weird. From the beginning, my body did not react well to this surgery. I was vomiting the day after surgery which meant...yep, you guessed it...another tube down my nose into my stomach. I only had this one for 3 days though. Three weeks after surgery I became sick again. For the next month, I had no appetite, was nauseous, incredibly weak and was losing weight. Basically I felt like hell. And to top it all off, my incision wasn't healing correctly so my surgeon had to cut part of it open again and I had to pack it with gauze for 8 weeks. Yes, it's as gross and painful as it sounds. After an ER trip, 3 day hospital stay, and a tube in my stoma (aka Stomie the Clown), I had my final takedown surgery a month early. My surgeon found that I had scar tissue that was not letting food completely pass through which was causing all my problems.

My takedown surgery went off without a hitch! It's now been 8 months since my final surgery and I'm doing great! I've gained back almost all my weight, I'm active, and lovin' life. My purpose for this blog is to use my experiences to get the word out about IBD (inflammatory bowel disease) and other chronic illnesses and to help those suffering from them. IBD and chronic illness can create so many emotions including anxiety, depression, fear, and helplessness. I found that it helped tremendously to have someone to talk to who had been through what I was going through and to get educated (just not too educated...you don't want to scare yourself with what could possibly, but probably won't, go wrong).

Anyway, that's all I got for now...stay tuned for more...