WEBCAST: No One Understands My Pain: Communicating about Crohn‘s & Colitis

Health Take has offered a very good webcast on how to talk to others about the disease you are living with.  The webcast especially addresses how with these diseases we often look “fine or healthy” but we are not.

“Often when you’re suffering from painful Crohn’s disease or colitis symptoms, you may look healthy and others may assume you feel better than you do. So how do you ask for the support, understanding and help that you need?

Join us as our expert guests share tips for effectively communicating about your Crohn’s disease and colitis pain and other symptoms with your family, friends and others in your life. From informing a co-worker about a difficult symptom to expressing your needs to a spouse or new love interest, you will learn about techniques that will help you feel supported and empowered. Plus, you’ll learn why it’s important for your emotional health that you speak up and seek assistance.”

Communicating with family, especially my family was EXTREMELY difficult. They just didn’t, couldn’t understand chronic illness and what it really meant.  When you have UC  ”are you feeling better today” has a whole new meaning.  We wrote our story of support and have put it on here for Our Story of Support.  Part of this blog has been to help others communicate their situation better. 

BLOG POST FROM LOTTIE in the U.K., she is headed into surgery at the end of the month and on her blog (which you should check out http://lottie30.wordpress.com/) she wrote the following post that made us think more about “communication”

“Talking to Megan and Mark about support etc and reading their take on it, made me realise that very often unless you ask you don’t get.  With this in mind I took an unprecedented decision to speak to them about it properly.  It is impossible to get my brothers and sisters in one place at once, especially as one lives in Sydney, so I emailed them all (and their partners/husbands).  I explained that I was having the op, what it entailed and more importantly how I felt about it.  I explained that it was a scary time for me and N and the kids and that we need their support not their sarcasm or dismissiveness (which is what I would normally get).  In response I have had some of the most lovely messages I have ever had from my brothers and sisters, which have made me feel loved and cared for by them like I never have before.  It is really special.  It has made me realise that yes, you definitely have to tell people what you want and then you might get it.  I feel supported in a way I never have before and that is an amazing feeling.”

Photo by: Jake Shears

Sex and Intimacy, Guide for Men and the people who love them Webcast

Oh, the tricky part of chronic disease. And the part we don’t nearly talk about enough, sex and intimacy.  I found the above webcast from male living with Crohn’s to be a honest, humorous discussion about his body image, disease, and his sex and intimacy challenges. Here, see this link to Mout Sinai about Sexuality: possible problems after surgery .  Although it is excellent information, it is “technical” where is the emotional stuff, where is the relationship aspect. Under the Emotional Issues section of the Mt. Sinai page they do state “Of course, other factors also contribute to how an individual perceives changes after surgery. People whose self-image is more reliant on physical appearance may be more prone to concern. Having or not having a committed partner has an important effect on coping. The amount of education available for surgery, which may allow for more realistic expectations, may also have an influence.”   Okay, so let’s talk about that, what do they mean?

I know that this was for years a real struggle for Mark and I to manage, especially when we were learning his disease, and he was losing his interest in anything physcial the more his health deteriorated.  But what we did form was a true relationship based on intimacy.  And it has been this intimacy that was one of the biggest gifts UC and surgery gave us.  We learned because we had to what gentleness and patience means, if we hadn’t I don’t think our relationship could have made it.  I find now that our intimacy is on a level unlike what I see in many couples (non-disease couples), and to be honest I wouldn’t trade it for anything.  We’ve been together 14 years, in our early 30s, and although many years of 20s were lost to UC – we are now back to healthy living which means more sex with now this added intimacy.   Good things can come from being sick I guess?!

I think that when we address disease or surgeries like Mark’s we talk about everything but the reality of body image, sex and intimacy. I wanted to share some of our experience because IT IS REAL, and all you reading this are probably in some stage of dealing with either sex or intimacy issues due to your stage of disease or surgery.   All I can say is talk about it, be honest and know it was one of our hardest issues over Mark’s illness.

Sex and living with an Ostomy: Everryone is different, so for some people being intimate with the stoma is probably a bigger than others (early on when the stoma is newish).  For us it wasn’t a big deal at all, and the reason it wasn’t a big deal is because Mark was HEALTHY finally. So for us the ostomy represented health.  I think the first time we were intimate after the stoma Mark wore the phoenix belt, then after that it wasn’t a big deal, he would just empty the bag and it would just there. I know some people tape up the bag, I know some people use attach smaller more temporary ostomy bags (which is clever). I’ve read of women wearing lingerie that strategically covers up the bag, etc…People make it work, and you’ll be suprised by how it is not really a big deal (as long as you make it a non-issue).

The Female Perspective: Females on Jpouch.org talking about Ostomy & Sex

The Male Perspective: Males on jpouch.org talking about sex and ostomy

Link to many many pages of topics relating to sex & jpouch/ostomy stuff:  Used the “Find” feature typed in “Sex” and there are 13+ Pages related to sex on the jpouch.org forum

These are only a few perspectives, but you can see that (1) people make the ostomy work and it isn’t an issue, and (2) there are places like www.jpouch.org where you can go and get the support you need on any related issues – you are not alone in this process.

Photo via: Dr.John2005

[youtube=http://youtube.com/watch?v=9JeZ0A7Jigw&feature=related]

The Rain Song

Sleep now, you’re on the edge of breaking down.
Breathe now, you can’t forget that one.
Rain fell, and you’re still along that same wet road.
Oh I’m only twenty one and I’m already so low.

When I’m in no pain, I’m so alive.
I hate my face when I take my pills.
I’ll live this way and I will until I’m gone.

But I’m okay. The topics change. I’ll be so great. I’m on my way.

It feels like rain when ever I flare.
On cloudy days I become aware.
Rain comes and goes, but when it comes, it likes to rot.

music and lyrics by jordan sweeney

[youtube=http://www.youtube.com/watch?v=NlTApl_Zhlc&feature=related]

In The Dark

I’m in the dark. I’m freezing.
The ghost is in my skin.
I’m paranoid, I’m fleeting. The stars are my light.
It’s dim, and I need more light.
Can I breathe tonight?

Is this me, my life?
Is there a reason for pain all night?
Will I be alright?

I’m in the boring season. It seems like no one’s here.
But all around is reason to live.
It’s only fear that pulls the trigger.
Will this last forever?

It’s time to see inside.
Is there medication that’s right?
Will I be alright?

I don’t want this. Please take this back.
God, I’m so scared. It’s time to relax.
Twenty seconds left for this time.
Will the next one hurt more? I’m fine. Why not?

music and lyrics by jordan sweeney

Instead of Providing you with ONLY photos of Mark’s Temporary Loop Ileostomy, we’ve started asking others to contribute their stoma photos. Now, please note, these are Loop Ileostomies, which means that they are likely temporary. There are other types of ileostomies like end ileo, we do not have any pictures of those.

Below is Ashely, she was about 21 years old when she had surgery, in 1 week she found out she had UC and then she was in surgery. Here she is showing her stoma, and her after the reversal her scar:

  
Here is Ashley’s scar after she had her “takedown’ surgery so she lost her stoma and now has a J-Pouch. Ashley is awesome and a real inspiration, here are her other photos Ashley’s Photos.

Many people are concerned about the longevity of their jpouch. How long will it last?  What types of complications might potentially occur?  Here is a link to an excellent site that gives you really good in-depth and objective info on the Potential Problems Following J-Pouch Surgery

Image to the left shows the large intestine and rectum removed, the formation of the temporary ileostomy, and the jpouch.  The whole series of photos can be found by clicking on the following jpouch.org link.

Image via:  Jpouch.org

I read this today from my daily thought book and the quote says:

“When we feel repsonsible, concerned, and committed, we begin to feel deep emotion and great courage” – 14th Dalai Lama

I am working on my dissertation, often long times of isolation, high stress, and wondering what is the purpose. But I know why I do this, and I know that my learned academic skills have helped me create this blog with Mark and use our experience to help others.   Although his disease and last 8 years have been so unbelievably difficult at times, I have grown so much from all this. And I’ve learned how not to be so selfish, not be so fearful, and how to turn a seemingly negative lot into a positive lot. 

Photo: Our dining room tale is now my desk, and desperate measures have brought me to drink very inexpensive wine at times! 

This is a great Interactive Ulcerative Colitis Tutorial.  It is pretty basic info, but it is comprehensive and it is really easy to follow. Plus, there is a cool explanation how food goes through the digestive system. 

Info from Medline Plus.

Image via: Lifespan.org

Video about Natural medicine for Crohn’s D.

A big question for many people with UC is whether or not to try alternative medicines.  There are so many avenues in which to talk about this topic, and I am NO expert, but for starters here is a good starter article from Mayo Clinic: Alternative Medicine for UC

My experience lasted for a year trying alternative medicines.  It was at year 4 of a very long flare (the one that lead to surgery), and I tried everything.

1) Acupuncture worked well to help me sleep, especially with UC where I was prone to getting little sleep from either getting up all the time or pred effects.

2) Aloe juice. I found that when I was in a more mild stage that aloe worked well for me. But I had to find the right aloe brand that would work. I would take it at night and it  seemed to lessen the inflammation for a little while so I could get a little sleep.

3) Probiotics – Did all the yogurt maker and the UC friendly yogurt.  Really labor intensive and no effects for me.

4) I worked with a Naturopath who focused on GI issues. He was able to do all the alterative tests, like bacterias and allergy that my western dr. wouldn’t try.  With him, I did a naturopath series of cleansing, I even did a liquid diet. Trying to slow my system down to try to lessen the inflammation then started slowly introducing foods. I lost tons of weight in this week and got really sick. This was a bad idea for me.

5) I tried many different pills, can’t recall all of them, oh yeah, Digestonol was $180 for 30 days of pills and that didn’t work and was really expensive.

6) During a 3 month time of trying to do natural, I also tried not working for 3 months and tried to relieve stress from my life to give my body time to relax and heal. This didn’t work.

7) I tried the SCDiet a few times, that just made me lose weight and was too hard to maintain, but mainly I couldn’t stand the weight loss.
Went to a visiting eastern medicine doctor for a private screening. He just wanted to sell me stuff, but his talk was really fascintating.

9) I had GOOD response to FISH OIL PILLS, andI would take those when I wasn’t on pred. and they seemed to help with the inflammation some.

10) I’ll let you know if there was more that was tried.  

If you’ve made it this far in this post, are you wondering, “Why did he try so much when it wasn’t working?”  The answer is simple: I had to know 100% for myself that if I choose the elective surgery, I didn’t want any future regrets.  Not everyone has to try as much as I did to know their colon is broken, but this was my process.   I still believe in alternative medicine and think that there is a great blend out there for UC western and alternative medicine options.   

Photo via: pazavi

Webcast of Why you shouldnt wait too long to have surgery for colitis?

Hosted by HealthTalk.  Talks with Surgeon, Sonia Ramamoorthy, M.D.

Join us as we speak with leading colitis specialists about when colitis surgery might work best to help you maintain an active, healthy life, and why waiting too long may be hazardous to your health. We’ll talk about the types of surgeries available, post-operative complications that may occur and the realities of living short or long-term with an ostomy. Plus, you’ll also learn about support groups, counseling and other ways to process emotional stress before and after colitis surgery. ” – (health talk website text)

*Around minute 14 the surgeon talks about being on steriods before surgery, Minute 26 talks about weening of pred. before surgery to improve wound healing.  High protein for good wound healing.  A good Attitude for mind over body.  when you understand the risks and benefits before you go into surgery you will feel empowered.  Getting your family ready for support.

**Minute 20 talks about alternative medicines.

**Minute 24 talks about possible risks of surgery.

**Minute 30 talks about lapro versus open surgery.  Talks about length of time recovery.

**Minute 33 talks about fertility (female).

**Minute 35 talks about ostomy.

**Min. 37 talks about living with jpouch, diet, BM function.

Do post your thoughts if you listen to the webcast! Deciding to have the “elective” surgery was the hardest decision to make. My reason was because I was in a year 6 flare and no medicine working, pred. dependent, I just couldn’t live sick any longer.  I wish we had found information like this before I made my decision. This is a good webcast, they discuss the biggest reason people wait (people who are medicine dependent and still with symptoms they mean – not those on meds in remisison). Reasons people wait or delay their decision to have the “elective” surgery:

1) FEAR

2) Worry of surgery related complications

3) Surgery apprhension b/c live  with disease so long.

4) Risk of having ileo or colostomy.

5) People worry that it is the beginning of a slippery slope that will lead to more surgeries down the line.

6) Quality of life, childbearing fear, etc..