Me + Jpouch (5 years later)

It’s been 2 1/2 years since my last post and 5 years post op. It is really amazing how fast time passes. I have been terrible (obviously) about keeping up with this blog, but my inconsistency on blogging about my health really shows how much of my life was given back to me due to the surgery and the healing that it brought to my life.

A little life update: I went to Australia in 2014 for a year with my sister. I began dating an Australian that I met at church and he followed me back to America, proposed, and we were married last year! We now reside in Australia and I just received my residency. As I’m writing this it sounds so romantic! Let me be honest for a moment, while all of this is very romantic and a total surprise it has been hard to be away from family and friends. I also struggle with anxiety and depression. As far as my bowel health though, I have had absolutely no complications in the 5 years after my surgery. I do have my new normal that changes regularly. If the Lord didn’t use surgery to heal me from UC, never would I have attempted to come to Australia with my sister. The world is such a vast, interesting, intriguing and beautiful place. I’m so blessed that I have this new life that opens up so many doors!

So, I’ve been busy and healthy.

I am compiling a list of questions that people just like you have emailed to me throughout the life of this blog about surgery, post op, what to expect, and the like. I will post a series of blogs addressing those questions. I still love to hear from each and every one of you who reads this. It blesses me tremendously and I hope I’m able to help you, even if it’s just to say “I know what you are going through” or “me too”.

So bear with me, and in the meantime here are some of my wedding photos 🙂

Also, my new email is tiffanychristinedrysdale@gmail.com.

 

 

Silent Suffering

I wish I would have known people who were suffering alongside me as I struggled through this condition for 12 years. My fellow sufferers (Colitis, Crohn’s, IBD) can relate with these feelings: alone, isolated, misunderstood, different. Even those who love you most can’t fully understand the depths of this disease and the effects that it has not only physically, but emotionally. Looking back, I wish I knew how to find others that were silently suffering.

I have been living free of Ulcerative Colitis for three years and I think I am just beginning to grasp the emotional toll it had on me. The word trauma is defined as: a deeply distressing or disturbing experience. Also, a physical injury. I remember when I was in the middle of my surgeries, a friend made the statement that I had been through a lot of trauma. That was the first time that I found vocabulary for what I was experiencing. Trauma is not reserved solely for those who have experienced abuse, violence, war, cancer, etc although I don’t diminish ANY of those experiences, they are all very traumatic. I just think it is important to acknowledge that those of us who suffer from these silent illnesses are experiencing trauma. Real trauma.

As I begin to sift through my journey, I am realizing that I’m unpacking over a decade of boxed up feelings, emotions, anxieties, and pain, all uncharted territory warning me to run the opposite direction.

If I can offer advice through my experience, please talk about what you are suffering through with people who are experiencing the same thing. Find online support forums, face-to-face support groups, see a counselor. Don’t keep silent. Talk about your feelings, emotions, fears, pain, your symptoms (even the embarrassing ones). You will know that you are not alone. Don’t suffer alone.

Current Update

I can’t believe it has been a year and a half since I last blogged. Yesterday was two years since my last surgery. God has been so gracious to me…I have had zero complications since that last surgery. It was all worth it. I don’t know how I could ever doubt His plan.

I think the last time I blogged I was still in the “honeymoon” phase of my j-pouch…don’t get me wrong, my life has been changed drastically, in an amazing way. But just like anything new and exciting, I have had to come down to reality about some things. I want to give everyone a realistic picture of what life is like. I am all for surgery to get rid of that horrible disease, but I also don’t want to paint an unrealistic picture of what life is like on this side.

So…If you don’t want graphic details, stop here! If you are considering surgery or are going through the process, or have UC or Crohn’s or just love poo then read on! (Don’t say I didn’t warn you.)

Like I said, yesterday was my two years post-op anniversary. I have found that my body is constantly changing. So here is my current, new normal (The things that have changed since my last blog post):

1. I go to the bathroom (poop) on average 7-10 times a day. I can still hold it, even for hours, but it’s not very comfortable. My stomach also makes loud gurgle noises when I have to go.

2. I get these little urges, NOTHING like when I had UC, but they are bothersome enough to where I won’t ignore them for hours, I’ll try to find a bathroom.

3. I will not take Imodium. I tried, a few times. It makes me feel awful and I regret it every time.

4. I have been able to start passing gas a bit, and it doesn’t smell! My farts don’t smell, ever! I can’t force it though, or I will shart myself. They just kind of slip out sometimes and I get excited about it.

5. I still don’t really have leakage problems. Sometimes overnight I will leak literally a drop, but that’s about it. I’ve never had much of a problem with that.

6. I stay away from salads. They usually make my stomach all gassy and it hurts.

7. I can drink wine, no problem at all! On occasion I’ll have a drink with liquor in it and that is fine as well.

8. I do take restrooms into consideration, because my BMs tend to be pretty loud. I won’t want to go at a friends house unless I’m close with them and depending on the public restroom I may or may not mind using it. At the end of the day, I can hold it, even if it means me being uncomfortable.

9. I find that if I’m busy and not thinking about it, I don’t go to the bathroom as much.

10. I still believe the single most important aspect of this surgery is choosing a good surgeon with a successful track record with pouches. My surgeon is amazing and am so thankful that God had our paths cross.

I am going in a week and a half to have my second annual scope so I will be able to get a full report on how things look! Last year he reported that everything looked amazing. Just hoping my pouch will get bigger so I don’t go so often. I have a list of questions I’ll be asking him:)

I hope that this is helpful to those walking down the same or a similar road. As always, email me  with any questions, I’m here to help!

 

Top 10 Questions: J-Pouch Surgery

I had a ton of questions when I was in the process of having the surgery for my j-pouch. I have recounted some of my top questions so that I can hopefully help those of you out there considering surgery or in the process of surgery. Please remember, everyone’s body is different. This has simply been my experience.

Top 10 Questions & Answers about J-pouch surgery…

1. Will I be able to have a normal social life with an ileostomy?

YES. There are ways to hide the bag. I (being a girl) had basically a tight slip that I would wear under all my skirts & dresses (that made up most of my wardrobe while I had the ileostomy because it hid the bag best). People who didn’t know would never be able to tell that I had a bag under my clothes. You can resume pretty much all your normal activities. I emptied my bag every few hours, but it never really stopped me from doing anything I wanted to do.

2. Will I be able to hold my poop once I have a J-pouch?

YES. In my experience, I can hold my poop for hours. I rarely get an urge at all, much less the urges I got when I had Ulcerative Colitis. I have NEVER ran to the bathroom since having my j-pouch. I rarely need to locate the bathroom when I am out like I always had to do. I know it’s time to go to the bathroom when my stomach gets rumbly and a bit uncomfortable. Rarely I’ll get a bit of pressure when it’s time to go or I if  have gas.

3. What will my diet be like with my J-pouch?

Everyone’s body is different. I was told I’d never be able to have certain fruits and vegetables by an ostomy nurse while my surgeon said that I should be able to eat whatever I want eventually. Being 5 months post surgery I really can eat whatever I want. When I eat things like salad and tomatoes it doesn’t digest completely, but I think that is sometimes true for a normal person. I can drink alcohol (although sometimes it upsets my stomach a bit). I’ll eat pretty much everything except corn.

4. Will I have diarrhea for the rest of my life?

This thought was a little upsetting to me. Doctors told me that I’d never have normal formed stool again. I would say in general, depending on what I eat I have formed/semi-formed stool about 60% of the time and diarrhea 40% of the time. This can change if I tweak my diet. Diarrhea however for me isn’t the same as a normal person. I can hold it pretty comfortably for hours, usually there is no urgency.

5. Will I have to take imodium for the rest of my life?

I was really upset about the thought of taking several imodiums daily. Part of the perks of having no Ulcerative Colitis is for once in my life I wouldn’t have to be on daily pills. I think in the past 5 months I’ve taken 1 imodium. Generally, I can bulk up my stool with what I eat and when I do have diarrhea I really don’t mind it.

6. Does it matter what surgeon performs my surgery?

I’m no expert in this, but going through the process myself I have to say YES. You have to do your research. You want someone who has done a lot of J-pouch surgeries SUCCESSFULLY  and continues to do them on a regular basis. This is going to affect you for the rest of your life, so you need someone very skilled in this particular area. It is a very delicate surgery and you want to make sure you have the very best.

7. How many times a day will I go to the bathroom?

Everyone is different. Generally I go to the bathroom 1-2 times in the morning before work, 1-2 times between 5 & 9 p.m., 1 time before bed, 1-2 times overnight. So a normal 24 hours I go about 5-6 times give or take. I know it seems like a lot, but it’s not like a normal person who sits in there for 10 minutes when they use the toilet. It’s pretty quick. The best part is there is no pain or urgency.

8. Will I constantly be getting dehydrated?

It felt overwhelming to me the amount of water I needed to drink when I first had my ileostomy. Things slow down after a while especially after the J-pouch is in use. I do my best to constantly have a bottle of water with me and yes, I get thirsty more than the normal person because I lose a lot more water then a normal person. I’d say I only drink as much water as a normal person is “supposed to” drink. Since my reversal I have not been hospitalized due to dehydration.

9. What will my “new” normal be like?

Everyone is different. At the end of the day, the disease is gone once the colon is removed (for those of you with Ulcerative Colitis). The quality of life is SO MUCH BETTER on the other side. I can’t stress that enough (again, this is my personal experience). In general, my appetite is better then ever before, I’m gaining healthy weight, & I’m more active then I’ve been in a very long time.

10. Will I get pouchitis?

I have read and heard many horror stories about pouchitis (inflammation of the J-pouch). I have not experienced this. I try to take a very strong pro-biotic daily and that is supposed to help keep your intestines healthy.

If you are in the middle of these surgeries, or are considering having surgery and have questions, please feel free to email me. I would love to help in any way I can! tiffgoad@gmail.com.

Be Still

I have moments where I reflect on the past year-and-a-half. I can’t believe it’s been that long. I am in awe of where God has brought me. If I could depict the last year and a half, it would look something like this.

 

Every day through this journey I’d wake up, knowing that it would be a challenge to even make it through the day, losing hope because of the seemingly endless road that lay ahead of me. I remember God bringing these words to mind as I was in the thick of things…”Be still, my love, don’t run from healing”

He was so faithful every step of the way.

Sometimes I just take a step back…and am so grateful to the God who has redeemed and healed.

I can make it to work everyday

Food is no longer my enemy

I have gained 35 pounds from my lowest point

I no longer battle the disease that plagued me for 13 year

God accomplished things in me that couldn’t have been accomplished in any other way

God does not waste my pain, He will use it in great ways

Thank you for walking through the painful times with me, and rejoicing with me in the sweet times.

After The Storm

I’ve been out of the woods for over two months now, and I am still in utter awe of what the Lord has done in my life, for His glory and for my good. Oh the depths of His love, that he heard the cry of a young girl at the age of 13, listened to the frustrations as a young woman, and He heard and answered the desperate pleas of his daughter who was in pain. In the midst of it, I had to remind myself “this too shall pass”, and it has. I am on the other side. I am free. I am loved. I am delighted in. I am His.

One Year Anniversary

Today is the one-year anniversary of my first surgery-the day my life changed forever. When I think back my emotions are mixed. I stand here today healthy and whole, but that did not come without extreme emotional and physical pain. God walked me through the entire process and his word remains true: He is faithful.

This is what my past year looked like:

May 2011 // Begin getting sick. Diarrhea 30+ times a day coupled with nausea and constant extreme pain. I was dehydrated and quickly dropping weight. At the end of May, I had to stop working and had my first trip to the ER. They found I had C-diff and gave me meds for that but told me “If you have Ulcerative Colitis it is very mild.” (We soon found out they were very wrong).

June 2011 // I was in the hospital most of this month. The medication for C-diff wasn’t working. I was released from the first hospital with them telling me there was nothing more they could do, I just had to wait for the medication to kick in. Meanwhile I was getting weaker and weaker and dropping weight. This is when I reached about 80 lbs and my days were spent in and out of the bathroom, unable to get more then 30 minutes of sleep without needing to get up to use the restroom. I had about 2 hours of the day where the pain left but otherwise my days were spent laying in bed in constant pain. I was admitted to a different hospital and had a colonoscopy. This is when they determined that my Ulcerative Colitis was very serious and were prepping me to be put on heavy infusions of drugs. A few days later is when they found the perforation and I was given 2 hours notice that I was having surgery which would result in me losing my large intestine, living with a bag for the next 8 months, and losing my disease. After surgery I had to have a blood transfusion.

July 2011// Spent a good portion of this month in and out of the hospital due to infection. The doctors couldn’t get my white blood count down. They inserted 4 drains into my abdomen to drain a few abscesses that I had, but that didn’t get my count to a normal level. They did test after test and couldn’t figure out where the infection was coming from. Since my weight was so low and I had been so malnourished for so long, they gave me a feeding tube to get some calories and nutrition in me.

August//I was able to return Orlando and eventually to work, although each day was a struggle as I was trying to regain my strength & health and get used to living with a bag.

October-December//This is when I had all my bowel obstructions. I was in the hospital 5 times for this with several NG tubes. I lost a lot of weight again. My hair was falling out because I was so malnourished. I began nightly infusions of TPN to regain my health. I changed surgeons and was under the care of an amazing surgeon at Mayo Clinic.

February//Had my first reconstruction surgery. They formed the jpouch but in order to give that time to heal, I had to live with the bag for 3 more months.

May//I finally had my reversal, the surgery was perfect and I woke up to have no bag after 11 months!

June//I feel better then I have in years!

In the Aftermath

It has been 3 weeks since surgery and I am feeling better then I have in God knows how long. I went in for my 3rd and hopefully final surgery (you can never be sure) on May 18th. The 2-hour procedure which consisted of closing up the ileostomy so that I can resume normal bathroom functions went perfectly-so well that I was only in surgery for 30 minutes.

I woke up in a much better mood then the last surgery-because I was in far less pain and I looked down to see that my bag was gone! That was the best feeling in the world, after a year of having an ileostomy I was beyond excited to actually poo like a normal person again. I had my first poo about 36  hours after surgery, and then they discharged me the following morning!

Here is my battle wound (where the ileostomy used to be). The doctor is letting it close up on it’s own. This photo is right after surgery (it is a small scab now).

I went into this surgery and recovery with no expectations-I have read numerous stories of people’s journey down this same road, and honestly most of them were very disheartening. My recovery however, has far exceeded any expectations that I could have had. It has been wonderful, and I was able to return to work a week earlier then planned!

God has been so faithful, I was reminded of what He has brought me through this past year when I read this Psalm:

Out of the depths I cry to you, O Lord;
O Lord, hear my voice.
Let your ears be attentive
to my cry for mercy…

I wait for the Lord,  my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning…

O Israel, put your hope in the Lord,
for with the Lord is unfailing love
and with him is full redemption.
(Psalm 130)

All I could do through this past year was wait on the Lord, I have realized how helpless I am and that I have absolutely no control. I had to cling to His promises of love and redemption. I waited on Him to come through, to rescue and restore me, and He did that. 

He healed me.

All those years of crying out to God for healing of my Ulcerative Colitis, and He heard and answered those prayers. Not in my way, or in my timing, but through His sovereign plan.

One of my dearest friends told me (before shit hit the fan) that this video reminded her of me, and what I’ll be able to say someday. It always makes me smile when I watch it-little did my friend know what was to come!

6 weeks away!

I have been horrible about updating, I’m really sorry. 

I’ve been online a lot researching people who have gone through what I’m going through and it is just astonishing the amount of people Ulcerative Colitis affects. I have read countless stories of people who have had a much, much more difficult road then I have, not to mention the people I have come to know personally who have walked this hard road. It breaks my heart, especially seeing children go through this. It also gets me excited because…

I’m going to begin volunteering at Florida Hospital in the children’s ward as a child companion. They are going to try to put me in with kids who are battling the same disease that I had. There is a handful of them that are “regulars” at the hospital. This is where my heart is and I’m so excited to be with these kids and hopefully bring some hope to them. I know what I have gone through is not in vain and I am so excited to see how God is going to use me.

As far as an update goes, I’m 6 weeks out from being bagless forever (God-willing). Time has flown by, mainly because I have been getting back to semi-normal life. I’ve been back to work full-time for 3 weeks now which was a surprise and a blessing. It’s so nice to have some normalcy again! I’ve been super busy because my car crapped out on me so I had to sell it, now I’m looking for a new car. I also have to be moved into a new place in May…I’m still working on details for that. 

The recovery from my February surgery has still been smooth (my surgeon is amazing). I did have some other minor problems. I was having terrible nausea everyday for the majority of the day accompanied by frequent headaches. I went to go see my gastro doctor and he said he wanted to do an upper endoscopy (a scope with a camera that goes down your throat) to see if I had any ulcers or anything that could be causing the nausea. I went in for the procedure last Thursday, they put me out (thankfully) and found that I had acid reflux. I was so relieved that it was something that simple…he put me on some medication and I am feeling so much better. Now I can say that pretty much my entire digestive system has been scoped and that all my intestines (that I have left) are healthy.

Thank you all for reading, it means a lot that so many are staying updated with my health:)

Post Surgery #2

I want you to know how grateful I am for everything…thoughts, prayers, gifts, calls, messages, and visits. You have all showed your love to me and I am overwhelmed once again with gratitude!

Sorry I haven’t updated until now, the internet was out at the house all last week.

As Michaela wrote, surgery went really well. I came out however, in a ton of pain and it took a little while to get the pain under control. My surgeon informed us that all the bowel obstructions I was having over the past few months was do to a mistake in the first surgery (I was at a different hospital for the first surgery). Basically, the incision through my abdomen that allows the ileostomy to come through was about 3 times smaller then it was supposed to be, therefore restricting things to pass through at times. I don’t know whether to be super frustrated that all the misery in the past few months could have been avoided or grateful that this was a pretty simple fix. God must have had purpose in even this.

Monday morning (3 days after surgery) my surgeon came into see me. He told me he was going to release me later on that day. I asked him if I could stay another night, and also if I could continue on with the TPN until I get nutritionally stable. He said No to all of this and then told me: “Tiffany, you are a new person, I fixed you and now you can be normal again.” I was just so used to everything having the worst outcome that I wasn’t prepared for a successful surgery and recovery.

As the day went on they began pulling all my IV’s, drains, and they got rid of my PICC line! Now I can wear tank tops again and I don’t have to be tied to an IV 14 hours out of my day!

The home recovery was painful, and the medication they sent me home with didn’t give me much relief. This recovery however, has been a breeze compared to the first. I am so thankful, my body is healing well because I am healthy which I know was the prayers of so many.

I feel like I’m entering into a new season and I am oh so ready for this. I feel like this is the beginning of me getting my life back.