Grieving After Crohn's Surgery

by tlc_79
(Adelaide, Australia)

Hi All


I am a 32 year old female Australian who has just been diagnosed with Crohn's after an emergency ambulance trip, urgent blood transfustion and midnight emergency surgery on my ruptured bowel.

I guess I am feeling quite angry/frustrated because I have been trying to seek medical attention for what I believed was a serious bowel condition for over 4 years but nobody would refer me to a Gastro as they just wrote it off as IBS.

So it got to the point where I took my first ambulance trip in January this year, and my 5th just this month in December, when they discovered that, even though they had recently done blood tests which had come up bad, I needed an immediately blood transfusion as my organs were shutting down.

An x-ray immediately thereafter indicated a ruptored large bowel so surgeons were called in for emergency surgery at 2am on Sun 4 December.

Surgery went well and I now have a temporary (but they won't guarantee that) Ileostomy.
Four days later pathology results showed I have Crohn's.

Generally I have tried to stay positive as I always am and feel at least it's a push for a healthier lifestyle and after 4 years of Chronic pain at least I have an answer and can receive proper treatment.

I guess I just feel angry that things had to go this far when I was already having CHRONIC symptoms for years.

Also I have beeen feeling very alone as even the most supportive family members just don't seem to understand what I am going through. Ie I am only out of hospital by a few days and still in chronic pain from the surgery and complications and I have family members offering to drop off plants so I can start a veggie patch so I 'have something to do'! And another family member wanting to come up and put the Christmas tree up together when they are aware that I am under strict orders to have plenty of rest and nap twice a day until the surgery pain and complications have healed a bit better.
Then my partner on a few hours of an afternoon I had designated to rest due to chronic pain asking if I could just put on and hang out 4 loads of washing quickly first. (I am not meant to be bending down to the floor based front loader or hanging clothes, lifting washing baskets etc).
Then I hear him saying on the phone jokingly that I have been told to take it easy and am not listening to anyone! Arrrrgh!

I know they mean well and have been fantastic but at the end of the day it just feels like they don't really understand as they cannot feel the pain and the emotional impact of what I am experiencing.

There is a support group nearby that I will definitely join asap but being just before Christmas I thought a chat forum might be a good idea in the meantime.

Thank you for listening - well reading - and I look forward to any advice that can be offered.

Many Thanks

GhostGirl79

Comments for Grieving After Crohn's Surgery

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Grieving and Guilt NEW
by: Annette Young

Hi all,

I felt obliged is to write another response because having read through all of the messages in connection with this post, I can see that in addition to anger there is also a lot of frustration and even strong feelings of guilt.

Unfortunately Crohn's disease is often a secretive disease with many sufferers trying to simply deal with it themselves. They are embarrassed by their many trips to the loo and they tend to shut themselves away until things start to settle down again.

The real solution is to take the fear out of the disease and I know that that this is not easy simply because it can be such an aggressive disease and seemingly flare-up any time. Understanding the disease and getting the correct diagnosis is half of the battle, the other part is learning to live with it, because there is no cure so making life as good as it can be.

Communicating to others about the disease is important because if more people understand the full symptoms and severity of Crohn's, they will be a lot more sympathetic.

This includes telling bosses and work colleagues what is happening as well as partners, friends and family. No one with Crohn's should feel ashamed or embarrassed to have this condition.

Sadly, until diagnosis has been confirmed many people do seem to believe that the symptoms are in the sufferers mind and that there's nothing really wrong. I appreciate that the guilt associated with disbelieving is very strong but be kind to yourself and instead turn your energies to something positive and think how much you can help by being supportive to those around you.

Crohn's is a fairly aggressive disease and it is a scary one too. There is a lot of information about Crohn's and this is readily available and the more that sufferers learn about the condition, the greater their ability to be able to overcome it.

The key is to embrace a more simplistic way of life and learning to be intuitive to the disease, understanding when a flare-up is likely and resting when it happens if possible.

One day there may be a cure for this disease but in the meanwhile, it is simply a case of trying to cope as best as you can and for people to support each other.

I wish everyone good luck.

Annette

Grieving After Crohn's Surgery NEW
by: Annette Young

Hello there,

Thank you so much for your post, I hope by the time you're reading this you are feeling a bit better.

Many people suffer with the symptoms of Crohn's disease without receiving the full diagnosis and this can go on for weeks, months or even years so I completely understand why you're feeling angry and frustrated.

The problem that seems to occur again and again is that the symptoms of Crohn's disease are similar to others including IBS and it can be incredibly difficult to get an accurate diagnosis. Although many of the symptoms are the same, no sufferer experiences the pain and frustration in the same way.

I can appreciate the you have tried to stay positive whilst experiencing such chronic symptoms and positive thinking is the best frame of mind to have. But when you are constantly wracked with pain and fear also takes a hold, it can certainly be difficult to stay positive.

As you say, you do least now have the correct diagnosis and steps can be taking to alleviate much of the discomfort by trying to source the best medication for you. Try the prescribed medications but if they do not work for you, do not be afraid to go back and ask for help.

Crohn's disease can have such a negative impact on your life and potentially more so in the early stages of diagnosis because although you will experience relief at having been diagnosed finally, you then have to come to terms with how the disease is going to affect you on an individual level.

You may experience nausea, abdominal cramps, headaches, diarrhea and most likely, you will experience fatigue too. Sometimes feeling fatigued can be quite overwhelming and it is hard for others-friends, family, to completely understand what you are going through.

Bottling up your emotions would be the worst thing that you can do at this moment. And, you need to let out the frustration that you are feeling and to confide in your partner your friends and family and explain to them how this condition makes you feel.

It is a secretive condition in that many people do not talk to others about it, they try to hide it but people will not be able to understand unless they have the truth communicated to them.

Stress can certainly make the condition worse, so do try to keep any anxieties to the minimum. Not easy I know, but stress has been officially identified as a trigger and can cause flare-ups.

Eat a sensible, simple, well-balanced diet, avoiding spicy food and you may wish to eliminate dairy food too. Drink plenty of plain water, do not smoke and avoid alcohol. This should stop any of the usual triggers and once your Crohn's is under control, you should have less aggressive symptoms.

But do bear in mind that Crohn's disease can be extremely unpredictable and aggressive and you may have some very nasty bouts and then nothing for a long time.

Hope this helps and wish you the best of luck.

Annette

Thank you all so much NEW
by: Tanya Castle

Hi All

Thank you all so much for your feedback, really appreciated!
I am a bit hopeless/slack with computers (even for my spritely young age of 32 LOL!) and have been back in and out of hospital since so I am sorry for my late reply. (I had a stomach ulcer and some reactions to medication but all good now).

I hadn't even seen the last two comments.

To the gentleman who wrote of his wife and people thinking it's in your head as I was even getting to that point myself, I thought I had Munchenhausens Syndrome or Hypochondria! And my family admitted similar feelings after the fact as we just weren't getting any answers and I had so much emotional stuff going on too! Gee 18 years is a long time to go undiagnosed!

So as much as it sucks to have a Chronic Illness, at least it is good to know what is happening and have the appropriate treatment.

Overall I'm feeling a lot more positive about things, but still get very scared of what the future can hold, especially when you read books written by people with Crohns who've had 17 operations in 17 years including a historectomy!

But things could always be worse.

So Thanks again for all your support.
It's lovely to log on here and not feel so alone.

Thank you for the California Christmas wishes too, sorry, I couldn't see your email address?

Kind Regards

Tanya :-)
South Australia
Email: tancas2@hotmail.com
Age: 32 years old. (born 1979)
Bowel Rupture and Emergency Bowel Resection and Ileostomy 4 December 2011.
Consequently diagnosed with Crohn's 8 December 2011.
Unsuccessfully seeking referral to Gastroenterologist for symptoms since approx. 2007. (dismissed as IBS.)
No known family history of Crohn’s.

Hope you are healing well NEW
by: Anonymous

Hi,

Really sorry to hear what you have been through. It sounds like you have had an awful time. I can understand your frustration, when you have known within yourself that something was wrong, but never got a proper diagnosis from the doctors.

I am a 29 year old female. I emigrated to Western Australia from the UK in May 2011. For years before that In had a lot of issues with constipation, bloating and heartburn. I went to the doctors a few times. All they did was prescribe me with a laxative and Ompeprazole for the acid reflux. At one point I ended up with gastritis and went to the docs. They found out I had Helicobacter Pylori and gave me antibiotics to treat that.

When i got to Australia, a couple of months in, things started to get progressively worse. My tummy was really bloated and gassy and i'd lost weight. I then started to have pain in what felt like my bladder and nightly fevers. A few trips to the doctors later, they suspected appendicitis. A CT scan confirmed an abcess in the small bowel and thickening of the bowel wall, which was confirmed as Crohns disease . I got admitted to hospital where they tried to treat the abcess with antibiotics. It didn't work so they did a small bowel resection. That was in September 2011. Was all a bit of a shock really and I find myself thinking about the disease at some point everyday. Every time I have a little twinge I think that the disease is back. My husband says I'm my own worst enemy and if I keep thinking like that the disease will come back.

After the surgery I was on antibiotics for 3 months. I only took them for 2 as I started to feel like they were doing me more harm than good. They seemed to stop the diarrhea, but that's now come back recently. Not every day, but most days. I've also not managed to gain any weight since the surgery so I'll be seeing a dietician soon to see if they can help me. I'm also going for an iron infusion on 16th of this month so hopefully that combats some of the tiredness!

P.s. my brother in Scotland has Crohn's disease too. He's had it for 9 years.

Hope you are starting to heal and coming to terms with what you have had to endure. Take care.x

your not alone NEW
by: Anonymous

i just want to say how sorry i am about what you have been through, i am 33 years old and have been suffering from chrons for the past 13 years now i was diagnoseied just after having my daughter.
It is a very hard illness to diagnose as every chrons patient can be very different, i have had 2 lots of surgey the last one being just over 18mths ago and i am going in for a 3rd operation in the new year to have whats left removed and a colostomy, i am eventually going to get some sort of life back, i know it is very hard for people to understand the illness until you have actualy been there it is so tiring and hard to deal with yourself never mind trying to explain it to family / friends you must remember you are not alone and please rest and take things at your own pace there is only you that knows your body xx
please feel free to email me on lizatkinson2011@hotmail.co.uk should you want to talk, Have a good xmas xx

Grieving NEW
by: Anonymous

My wife had crohns symptoms for 18 yrs before they diagnosed her when she had a tumor in her abdomen. It grew around her appendix and caused it to burst as well, almost killing her. They reomoved the whole ight side of her colon (small intestine). So now we say she has a 'semi-colon'. It wasn't till then that they diagnosed it. All the dr.s she went to for all those years told her it was all in her head and that the symptoms of losing 30 lbs. in 2 weeks, was her mind shutting off food because she though she was fat. It got so bad over the years that I, her husband the one she should have been able to count on, started believing it was inher haed too. For that I am ashamed! It's no that I didn't take care of her, I just didn't believe she was sick. SO....you are trying to get used to the fact that you have it, and so is everyone else. My wife almost died form that incident, that was about 20 years ago and people belive her now,,but they don't understand it. The best thing I can suggest is for everyone to get educated. The more that everyone knows about it, the better. All of the inconsistencies and things that come up when you're sick, will have some kind of explatation. Nobody will know your pain and problems until they to have it, like, our son, who at 25 was diagnosed too. All the times 'mom' was sick and missed his school meetings, plays etc. He finally understands why she missed them. Why she had to leave in the middle of his highschool graduation, etc. He repects her so much more now, because he 'knows'. With all the research and studies they have now, they didn't have back then, so the information is out there. Run off sheets for your friends and family, tell them, 'Here.... this is what I have, this is what it does to me, deal with it, minus the snyde remarks. It's not easy for me either!'
Hopefully you have enough compassionate people in your life to help you through it. Most important, theres no one to blame, so try not to get angry, it just causes you more physical problems. Stress is a big trigger, so try to chill. I hope and pray the best for you. I don't have it, but I've been around it for a long time. You have the disease, but it doesn't have you. How you react to it will make all the difference in the world.
May God bless you and Merry Christmas from California. Feel free to email me to bend my ear. I need the therapy too.

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