Grieving After Crohn's Surgery

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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

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Grieving After Crohn's Surgery

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Jan 21, 2012

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.

Jan 06, 2012

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

Dec 23, 2011

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

Dec 23, 2011

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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Grieving After Crohn's Surgery

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Grieving After Crohn's Surgery