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Crohn's Disease Forum » Surgery » Semi-colon - Hemicolectomy Support Group


12-24-2013, 02:28 PM   #1
MsOJ
 
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Semi-colon - Hemicolectomy Support Group

About this Support Group

As treatments go a lot of us Crohnies seem to end up having a hemicolectomies but there doesn't seem to be a lot of info out there on aftercare, follow ups, keeping well afterwards and long term effects.
Hopefully we can share our experiences

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12-30-2013, 03:53 PM   #2
MsOJ
 
Join Date: Aug 2012
Location: London, United Kingdom

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My story...
I had a flare up around summer 2011, persevered for a few months on no meds (kind of in denial and happy to lose a few pounds to be honest). Until it stepped up a notch; constant trips to bathroom to be sick or worse. I got in contact with my GP to get the steroids and azathioprine as per previous flare ups but they would only prescribe a small amount to tide me over until I saw a consultant. I got an appointment with the specialist nurse and got more steroids and a then azathioprine and a follow up colonoscopy.
Everything seemed to be under control, flare settling down by early 2012 so I thought that everything was sorted. However after a couple of months of being weaned from the steroids I had a sudden onset of sickness that wouldn’t stop with incredibly painful stomach cramps. I went to my GP who suspected food poisoning and told me to wait a couple of days and come back if it hadn’t resolved. I told him I wasn’t happy with this and that I couldn’t keep down even small sips of water but when home none the less. It got worse during the evening so I called the out of hours doctor who said that visiting me would be pointless and if it was that bad I should go to hospital. I explained I had no way to get myself there as I was in no state to drive so he said to call an ambulance. I felt like a complete hypochondriac calling an ambulance, I explained my symptoms and they said they would get a doctor to call back to triage me to see if an ambulance was needed, next thing I knew the ambulance had turned up 20mins later. They assessed me and took me in.
A few hours passed, was put on anti-sickness meds, pain killers, anti-cramping meds via drip and an x-ray. Nothing sinister was found and I was eventually sent home about a day or 2 later.
This happened about every 4-6 weeks for until the summer at which point my Liver reading starting going off the scale and the doctors were asking me if I drink a lot of alcohols… Then the consultant put me on Humira injections. I was optimistic that this could be a turning point and there was no further sickness, still a lot of bloating so I was just getting on with life and work. But I started eating less and I was still getting cramps, I went for one of my regular gastro check-up which happened to be on a good day and mentioned that my stomach was still quite swollen. As a precaution the consultant was called and he felt my stomach but wasn’t overly concerned but requested and x-ray which I had an hour later and went home.
The next day I went to work as usual, went to a meeting, got back to my desk to find I have been emailed to my person and work emails, half a dozen missed calls and voicemails telling me to come straight to hospital and they were finding me a bed. I called back immediately and they said part of my bowel was hugely dilated and to come straight to hospital. This was it, after months of none specific symptoms my condition had deteriorated and surgery was certain. Scar tissue had built up over the duration of my condition to the point that I was almost fully obstructed and the dilated portion of bowel was the build-up before that blockage and it was ready to burst (I later found out that this area of bowel is normally 1cm wide and is sometimes stretched for colonoscopy procedures with air to 2cm, mine was at 5cm). I goggled the operation and what was going to happened and it was daunting, I couldn’t believe there was no further medication that could fix this or no keyhole available. And to make things worse I was told a few days later that I would probably need to have stoma that would hopefully be reversible.
After a lot of mixed emotion and delay tactics from me the operation went ahead and was successful with them checking the rest of my bowel for anymore disease (luckily none), leaving 345cm of small bowel but also a stoma. This was reversed a few months later after me nagging and trying my hardest to get better and put some weight on. I had to resign from work as a contractor. On Christmas Eve 2012 I managed to get myself discharged from hospital 3 days after my reversal surgery – whole once more and disease free. A 3 month course of antibiotics was prescribed.
A year on still doing well had a follow up colonoscopy 6month after my last surgery which was clear and going forward I will have regular gastro follow up, next one in a couple weeks.
Now the question is what lies ahead…
What’s your story and how are you doing?
12-30-2013, 04:26 PM   #3
Ratty
 
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Join Date: Dec 2013
Location: Wigan, UK.

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My surgery was in 1989. I was diagnosed a couple of years previous and as seems to be the norm, medics had difficulty in diagnosing me. I had the usual treatments for constipation even though I said that I wasn't, after all, I was just a kid, what did I know???!!!

Anyway, after 6 months of progressively worsening cramps and my school work and social life suffering, I was eventually diagnosed following a colonoscopy which my parents paid for privately because the NHS weren't interested. My diagnosis was, "You have. Crohn's disease, you need to take these steroids, carry this card and come back in two weeks." Very informative I'm sure you'll agree.

Steroid on and off for a couple of years and 3 hospitalisations for IV steroids and antibiotics and somebody suggested surgery. It wasn't a major decision for me, I wasn't apprehensive but then again I think I was naive.

Anyway, successful right hemicolectomy, painful recovery, 3 stone weight increase in 3 months and no looking back.

Just over 24 years on and I haven't had another flare up. I have a couple of ulcers at terminal ileum but I'm living without any controlling drugs or pain meds which is a blessing.
__________________
Diagnosed with CD in 1987/8 aged 15.

Surgery (right hemicolectomy) 1989 and in remission to now although I do have a couple of ulcers at terminal ileum.

No meds.

Some arthritis in lower limbs linked to CD treated with over the counter pain meds and holistic therapies.
01-01-2014, 03:29 AM   #4
MsOJ
 
Join Date: Aug 2012
Location: London, United Kingdom

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Wow, your remission sounds amazing!!!
Long may it continue
01-05-2014, 04:20 AM   #5
Willowcat05
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My sons story. It all started in 2011 when we were on holiday in Lanzarote j started to have diarerhoea we put it down to holiday tummy. When we got back he was having diarrhoea every few days and I noticed he was losing weight so took him to our Gp who said that there was nothing wrong with him and because I was small and thin did I expect my son to be big anyway this went on until Dec 2011 when he was really bad with diarrhoea took him back to see a different doc who took one look at him and sent us straight to hospital where scopes were done and crohns was diagnoised He was put on EEN for 8 weeks then started azathioprine he had 3 flares in 2012 and 1 in 2013 he was scoped again to find he had strictured in his small intestines so was operated on october 2013 where they removed 35cm of small bowl 10cm of colon and his apendix keyhole. He was put on methotrexate injections. He is doing much better has put on weight and has grown so long may it last and he has a long remission.
02-12-2014, 10:35 AM   #6
aimeey17
 
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hi everyone I was originally diagnosed with ulcerative colitis in 2004 so have been dealing with it for the last 10 years. In 2011 I had a total colectomy with J pouch so I no longer have any colon but since I have been getting flare ups in the small strip of colorectal tissue that is left. it has been very frustrating I've now developed a fissure and fistula which my surgeon tried to correct but the fistula has come back so I just now had to start taking Humira an Imuran again. after I had that surgery my surgeon told me that the surgeon that did my total colectomy left too much colorectal tissue I should have been left with a lot smaller of a strip and that's why I'm continuing to get sick. it's so frustrating. I'm worried about the long term effects of being on biologics like humira and Replicas with the increased chance for cancer. they're saying that I can have another surgery to remove the large piece of colorectal tissue that I have left but it would be another two parts surgery with an ileostomy bag and then take down 8 weeks later. after going through that before I just can't imagine going through it again. I live in Virginia and my local doctors just don't seem to have it all together so I'm going to get a second opinion at the University of Virginia digestive health center and hopefully they'll have some better ideas of what to do with me I hate it doctors always say I'm such a complex case drives me crazy.
03-10-2014, 02:23 PM   #7
hawkeye
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Location: New Brunswick

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Had a left hemicolectomy in February after over 23 years with Crohn's and about four years of increasing symptoms. Last year, my GI basically said it isn't a case of if you need surgery but a case of when.

The post on the surgery is here http://www.crohnsforum.com/showthread.php?t=59203
__________________

Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
03-27-2014, 11:01 PM   #8
yosemitegirl
 
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Location: Cameron Park, California

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Crohn's X 45 years w/ 10 surgeries...

Disease began in terminal ileum and then into the colon. Each subsequent surgery has been at the anastomosis for severe obstruction. 14 months w/ ileostomy and had it reversed. Currently, what's left of the ileum is connected to the half of colon left. Surgeons say next surgery will be permanent ileostomy since diarrhea is off the charts. I decline for now.

Have had sepsis twice and paralytic ileus twice as complications. Awful...

Have taken every med w/ no remissions.

Surgery is difficult and it gets harder with age.

The best possible outcomes to everyone... take care.

Michele Lea
04-14-2014, 04:29 PM   #9
trashoken
 
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Hi I was diagnosed with Crohn's Disease and Ulcerative Colitis Marsh 2013, I had an emergency right hemicolectomy 2 weeks later. I had a painful recovery and at first found it very hard to come to terms with as it all happened in a month, they said that I had probably had suffered from Crohn's for 11 years. I was coping really well for the first 5 months then I started to get anxiety and have panic attacks, I was taking the steroid Predisinole as soon as I came out, but they forgot that I was still on them and left me on them for 8 months longer than I should of been. They started to wean me of them but they did it to quickly and I ended up in hospital for a week. They weaned me off them more slowly and now I have been off them for 3 months, but I have still got problems I still have mild anxiety every now and again, which I have learnt to cope with for the best part, but now I have muscle pains in my arms and legs and I suffer with really bad mucus in my nose which prevents me from sleeping and I struggle to breathe, does anybody else suffer these symptoms, and if so is there anything I can do to rid me of these problems.

I also take other medication:

Folic Acid
Omeprazole
Mesalazine
Loperimide
Vitamin D
Iron Tablets
Magnesium Glycerophosphate
B12 Injections (every 3 months)
05-08-2014, 08:24 AM   #10
nogutsnoglory
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My main issue from my hemicolectomy is that my bowel movements never returned to normal. I have mainly had diarrhea since and cholestyramine has done nothing for me.
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