Angry Bowels- IBS?

She's just discovered her IBS isn't caused by chocolate!

My toilet and I have become close friends :(.

Closer than I ever thought imaginable.

Last post I looked at The Measure of Success. That was focused on determining whether the surgery had been successful or not and how that determination would be made. I said then that its not as simple as pain/ no pain. Boy, was that ever true?

So I had the pelvic issues I mentioned with the shooting pains and cramping. Then I started to develop some abdominal ones as well. I was moving between diarrhea and constipation and things just would not settle down.

Then came the gas and intense abdominal cramping. As you may imagine the pelvic stuff and this on top didn’t make for a happy camper. I was literally bent over in pain.

I found myself on the toilet trembling, with dark eyes and just trying not to scream. Yet what felt like constipation wasn’t and what may have presented as diarrhea was not necessarily the case either. What on earth was going on with me?

So, the good doctor and I had one of our conversations and he suggested that I use Buscopan. I had used it previous to the op for just two days when I was having abdominal cramping after BMs. This pain though was times worse.

I did as advised and the meds did help tremendously but I found the pain would return depending on what I ate.

Being the good research student that I am I started to look for possible causes. The symptoms I experienced all pointed to Irritable Bowel Syndrome. I was not satisfied with this and dug deeper. I discovered loads of threads, blog posts and research papers about IBS developing after abdominal surgery and laparoscopic pelvic surgery ;( There was also some research stating that IBS symptoms are sometimes confused with bowel endometriosis. Hmmmmm.

WOW!

Maybe, my body is just angry for being invaded and manipulated 🙂

I started reading many of the comments and experiences of the women involved and then I stopped……………it was not very encouraging. Many of them stated that the problems have persisted for years.

I chose to look at how my diet could be modified to help me. I discovered quickly that certain things had to be cut from my diet immediately. Each time I ate the item I found within 1/2 hour the cramps and rumblings would start. I have cut greasy foods, pepper, cheese (didn’t eat much of this anyway…like once every few months), lentils and channa (ate loads of these though) and citrus fruit thus far. Many of the other recommended changes I already had within my diet e.g brown rice only, gluten free, no dairy, minimal animal protein and no fried/ processed foods.

I have also taken to drinking tea………..in Barbados we call any hot beverage tea, regardless of chocolate, cocoa, green tea, black tea…………I have taken to drinking herbal tea everyday. I drank herbal tea before just not often. Well I’ve been drinking it at least 2x a day recently. I have also cut the portions I eat. I now strive towards 5 small vs 3 large meals and take the time to eat in an unhurried setting and manner…………making sure to chew my foods well.

This also means that I cannot purchase any meals but must ensure I prepare and travel with what I am to eat. This is not really an issue, I usually do this most days. I will just have to cut out the once in a blue moon purchases.

These changes have helped significantly! I have little to no IBS like pain once I follow these diet rules well. If I slip up, even a little, in 1/2 hour my body and I start to fight.

So, is this permanent? Lord knows because I don’t. All I can say right now is that I keep on moving forward. Test, adjust and step. I continue to deal with it one day at a time.

 

 

 

30 Day Chronic Illness Challenge- Days 26-28

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Day 26: What impact has this had on your friends, partner, family etc.?

Think that I answered this question before earlier in the challenge but:

My Family- Husband and children

This has not been easy for them on any level. My husband has been with me from the beginning through year after year of doctor’s visits, medications, surgeries and has watched me be well and then be at the point where I can hardly walk or function without his help. He has been my rock- quiet and sure. It has been difficult for him I know, many times I think this is not what he signed up for. It seems more “worse” than “better”. Despite it all though, he’s still here and I praise God for him every day. He never complains or gets upset, he just does what needs to be done and we move along.

My children, they are on a roller coaster. Sometimes with mummy happy and up and able to do stuff, go places etc. with them and then sometimes not. They do get frustrated and lash out at times. For the most part they just accept it. In some ways, they are resigned and/ or desensitized to my pain. They have learned to make the best of whatever I can do when I can. They have also become self-reliant and do whatever they can for themselves.

My Friends

I don’t have many of these. I have loads of acquaintances but friends no. The few that I do have are faithful. At times, they too get frustrated because I must cancel at the last minute of just stay home all the time but they are here for me whenever I need them.

 

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Day 27: What’s the most helpful advice you have had?

The best advice that I have been given is:

“Have your meltdown, cry, scream, fall apart. When you are done, get up and go again, fight again. The world will continue with or without you. So, decide.”

This helped me to realize it was ok to lose it ever so often and that I am in control of what happens after that. Life is hard, yes, it is. I must decide what I want and go after it. Staying down is no use to me and does not help me to progress. Everybody has a struggle; I either fight and continue or stop and die but the world will go on.

 

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Day 28: Name 5 things you have achieved despite your illness?

Despite this illness I have achieved some of my dreams in mainly my professional life. I have:

  1. Completed a Master’s Degree.
  2. Co-authored and Academic Book.
  3. Started a Business.
  4. Got a second part-time job.
  5. Started this blog.

30 Day Chronic Illness Challenge- Days 23-25

I have been ill for a bit now and am way behind in my challenge, even this has depressed me. However, I strongly believe that I should complete what I have started and am doing such now although I don’t feel like writing a thing.

 

 

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Day 23:  What do you say to yourself when you need a pep talk?

I am an advocate of self-talk. I firmly believe its what we whisper to ourselves or the scripts that we constantly play in our minds that determine our actions and our outcomes. Why? This is what we believe and it plays out in every aspect of our lives.

When I need, a pep talk I tell myself a few things:

  • God’s got this, no need to worry.
  • Serenity- accept what you can’t change, change what you can, know the difference.
  • This too shall pass.
  • It won’t always be this bad.
  • You can get through this.
  • You are stronger than you think.
  • Look how you handled ……This is no different.
  • You can do today, one minute at a time, one step in front the other.
  • There are lessons to be learnt, learn them.
  • Share with others what’s happening now, it will strengthen you all.

 

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Day 24: How have you managed to juggle your social life through your illness?

 

Social Life?

I am not your regular social butterfly. I was never one to be out and about every weekend or any such thing. I have always spent most my time at home or at least with family. Most my social activity came from church, although I do enjoy plays, recitals, dance productions and a good dinner outing.

I have become more a home body because of illness. So even the activities I did previously I don’t do anymore. I stopped driving at night, a while back, unless necessary. I found that the Pelvic Congestion Syndrome brought so much fatigue and heaviness as the day progressed that by night time I was just too tired to focus on the roads as I should. Many times, I am sure that angels took the wheel from me and drove me home. I was just exhausted and not alert. I remember one night, I arrived home and parked the car and could not remember driving or which road I had travelled. After that I decided it was foolhardy to continue driving, especially at night.

If I have an event now, I will rest as much as possible before. This brings no guarantees of my ability to attend or stay through the end of the event. That’s just how life is.

So, social life……………I don’t really have any.

 

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Day 25: Name 5 Activities that you have managed to pursue while being ill and 5 that you have done that you wouldn’t have done had you not been ill.

 

I don’t think that I can find five things in either category but here goes…………

Since I have been ill I have managed to:

  • Complete a University programme.
  • Do other self-improvement courses- cooking & dressmaking.
  • Run a 5K Cross Country Race
  • Volunteer services to train others
  • Open a business.

 

Things I have done that I wouldn’t have if I were not ill:

  • Start this blog.
  • Start a book.
  • Register for a Psy D programme

The Storm Rages

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A few days back I wrote The Calm Before The Storm . In that post I spoke about what was going on in my body, what I was feeling and the gradual decline that I felt taking place.

The calm now has passed and the storm rages. Funny thing is I don’t believe its at full strength.

Over the past seven days things have just gotten worse and worse. I returned to work last week Monday, March 13 and was only able to remain at work for three days. Each day, by afternoon the pain was so intense I could do nothing but lie on my desk and wait until my transportation was ready. Upon arrival at home I went straight to bed and stayed there for a few hours, unable to do anything else.

I have been home since then. In varying degrees of pain.

On Sabbath I took the children to church and to participate in the Global Youth Day activity- where they go out into the community doing acts of kindness for others- and I was in trouble from the time I sat behind the wheel of the car. People may ask why I went although I was in pain but the truth is, I have to try. I have to do things with and for the children, my husband cannot do every single thing all of the time. He has been doing most of everything for a while now. Sometimes he needs a break.

So, I drove them to church and sat in the car propped up on cushions while they went out into the community.

Sidebar- its amazing the number of people who asked me if I was going with them and dropped remarks about it; made comments about my sitting in the car and not in church or just looked at me in a disapproving manner.None of these people asked how I was doing. Only the one or two who were responsible for the activity in which the children were involved inquired of my health. Just another example of how quick we are to judge others.

So, I sat in the car and waited for about 1 1/2 hours until they returned. As soon as they returned I left and returned home to bed. I stayed in bed for the remainder of the afternoon and evening. Hubby took them to the evening activity. Although this is my life, I still have to try to let the children do stuff.

Sunday was horrible. Along with the constant heaviness and dragging pain I also found I was having sharp blinding pain in the right ovary. It drove me to the codiene – which I had decided I was done with- I took both the tramadol and codiene in layers as advised by the doctor. Thankfully, the two together knocked the pain down to 7, which is still not a good level but reduces the probability of me having to go in for urgent care and IV meds. When I took the codiene I literally could not move from the bed but about an hour later I was able to at least go to the bathroom on my own and move from the bed onto the sofa and spend some time with the children.

That has been the story since then. I have been taking both meds and living between 6 and 7 on my pain scale. I have been mainly in bed or at least on the sofa laying down.

My appointment with the surgeon is still days away on March 31st. I am lucky to see him since his office was booked up to July when I took in my referral but still its a long way off.

For now I stay quiet, trusting that God will either calm this storm or calm me but either way I will be ok.

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30 Day Chronic Illness Challenge- Catching Up- Days 18-20

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18. Do you think you have become a better person through illness? Explain.

Yes, I am definitely a better person as a result of being ill. I was always a generally empathetic person and sought to consider the feelings of others in everything I did; this is probably what guided me to my profession.

However, I have found that illness has given me another level of empathy, a deeper level; one that can only be reached through this type of experience. This has made me a better person, it has also made me a better Psychologist.

'I see a bright future, a transformation: Beauty, wings, elegance...'

19. How do you feel about the future?

I am very optimistic. If I am honest I would admit that sometimes I get down to the point where I can only see directly ahead, the next minute or hour.However, I also see God just setting me up for greater things.

Many plans and dreams that I have had and held for years, in some instances even doubted myself; I see falling into place. God has opened opportunities and caused me to meet people and make associations that are directly needed to fulfill these same dreams. Avenues that I didn’t even know existed have opened before me.

It gives me hope. My future may not be totally pain free or disease free; but I have a future…..and it is bright!

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20. Have you met anyone with the same illness? Did it help?

I have met numerous women with Endometriosis but I have not met anyone in person who has Pelvic Congestion Syndrome. I guess this is because it is relatively new and un-researched. I think PCS is also misdiagnosed and under- diagnosed; while Endometriosis, although enigmatic is a more common diagnosis and to some extent better understood.

Meeting these ladies whether in person or online has been encouraging to me. I felt as if I was alone for such a long time. Although it hurts to hear their stories and I cry with them it is comforting to know that others are fighting with me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

30 Day Chronic Illness Challenge- Day 17

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How would things be different if you weren’t ill?

I thought about this one for a while. Its difficult to imagine life without illness but I will return to the time when things weren’t this bad although I was still ill.

In terms of my family I would do more with them. Most times I have to absent myself from outings and activity because either its too much for me or I know I will not be able to stay as long as they will want to; so instead of ruining their fun midway I just don’t go. So, I would be more present in their lives…………especially the children.

I would run. Just run for the feel of it, for the fun of it. I would exercise regularly. All the aerobics and swimming and running that I no longer do because of pain I would do. For sure I won’t take the ability for granted.

I would have my house under control…………..at least a bit more than the general out of control status it holds. I am not a neat freak or an “every surface constantly sterile” person but I would have it together.

I would generally do more, more with family, more with friends, just more. Its difficult to put into words. I think I would be more fun loving and carefree as opposed to ultra cautious- I won’t be careless- but just enjoy life and activity more.

Professionally, I would have been further in my studies. Since education is expensive and illness is expensive; I would have had more money to spend on the education earlier.

On the subject of money, I would not be in the amount of debt that I am in simply because I would not have the medical bills- doctor visits, medications, tests etc. that I now have on a monthly basis.

On the other hand I would like to think that I would be as empathetic and caring as I am now even if I weren’t ill. I know that a large part of who I am now is as a result of the experiences I have had. I don’t know if I was never ill if I would be the same person I now am.

I can’t say I would be happier because I am happy. I would say I would be less frustrated and less angry at times.

Life would be very different. Chances are though if I had all that and had not been ill, I would take it for granted. If I were to become cured and no longer ill I would treasure each moment because I know what the other side is like.

 

 

 

 

 

 

 

 

 

 

 

 

30 Day Chronic Illness Challenge- Day 15

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What would you say to people newly diagnosed with this illness?

Dear friend, if I could have spared you this aspect of life I would have because I have experienced it and it is not my wish for anyone. However, that is not within my control; neither is it in yours.

The first thing I will say to you is never be ashamed or hide the truth about your illness from anyone. The way you treat your illness is the way others will treat it and you. If you are ashamed and timid then others will treat you as if there is something to be ashamed about.

Secondly, do not let the illness define you. There is so much more to you than this illness. It is not who you are it is an illness that you happen to have. Do not lower your goals and expectations of yourself based on being ill. Your path may be a bit more complicated than some but it does not mean that you cannot achieve all you have ever dreamed and more.

Thirdly, become your own expert, research the illness and journal your experiences. It may seem tedious at first but that information will be important when it comes to your care. The symptoms and effects of this illness are so wide and varied that you need to understand how it affects you specifically and convey that to your healthcare team. They do not know all. You have valuable contributions to make in your care.

Next, advocate for yourself. This is most important when you have a chronic illness and one that most times leaves you looking just fine to those looking on. You need to be prepared to fight some battles on your own behalf. Expect it…………its inevitable.

Fifthly, talk to other women. Learn from others who have been through the same or similar. Acknowledge that you are not alone…………..at times it may seem that way but you are not. There is a large community out there, get connected. The support is vital, especially in the difficult moments.

Next, accept there will be good days and bad days. This is the nature of life with this illness. There may be treatments and surgery, time off work and pain. There will also be great days. Days with family and friends and lots of happiness. Enjoy these days most so that they can carry you through the not so good ones.2d85fe82508def73712e4307699f6a53

Lastly, never give up or in, keep fighting and keep on moving forward. The battle may seem long and difficult at times but you can do it. This will test you in ways that you may never have imagined but you are strong………….stronger than you think. You can do it.

 

You can live with this illness and still have the best life ever.