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Newly diagnosed & recovering post-op

xxjemmamxx

xxjemmamxx

Hi everyone :sign0144: & this is my story:

I was experiencing symptoms of Crohn's Disease since the beginning of 2012 but (stupidly) decided to ignore them in the hope that they would correct themselves. The symptoms suddenly became severe around the 20th November and I was experiencing painful BM, blood, severe abdominal pain & swelling as well as nausea. I spent one evening in the worst pain I had ever experienced although it passed after about 20 minutes.

Anyway, I went to my doctors and they put me on Movicol in case it was constipation. The symptoms carried on over the weekend so on Tuesday 27th November I was admitted into the hospital ward querying appendicitis or the possibility of ovarian cysts. I had emergency surgery at 9am Wednesday 28th November, which was an exploratory appendectomy.

The procedure should have taken around about an hour, but it ended up taking 6 hours! I had a laparoscopic converted to open right-hemicolectomy and had 10cm of my small intestine (terminal ileum) and 4cm of my colon resected as well as my appendix and caecum removed. The appendix was fine although the bowel was really inflamed and also contained a fissuring abscess cavity.

I came round with a morphine pump, IV, drain and catheter and the first couple of days were pretty hazy. I was sick a lot (from the Morphine) but not in a huge amount of pain. Gradually I recovered and started to feel 10x better every single day and especially better when my drain and catheter were removed (ouch!). I was able to leave hospital on the 3rd of December.

Recovering at home has had it's ups and downs. I received my letter from the hospital which confirmed the diagnosis: Crohn's Disease. I have a follow up appointment on the 8th January.

My wound started randomly leaking around a week ago and now it has started to split, starting with a tiny hole which is gradually increasing in size :frown: My mum (who is a nurse) visits every 2 days to change my dressing and at the moment the open wound is not deep enough to pack. I've been on antibiotics just in case, although my swab test came back negative for infection. I'm finding this really distressing but I'm trying to take each day as it comes.

It's been a really hectic 3 weeks for me and I still haven't got my head around it all. Luckily my work and university have been great with giving me support and my partner has been wonderful at caring for me. I'm starting to put on some more weight now too (I weighed 7stone when I left hospital!) I'm trying to stay positive but I have no idea what to expect with this disease. I really hope that I make a full (as possible) recovery soon as I'm getting married in March and want to fit into my dress!

If you've read this far then thank you very much! :ybiggrin: I look forward to getting to know you all and learning more about this illness

Jemma xxx
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I am sorry to hear that you have been so poorly recently and have already had to have surgery :( Just know you have come to the right place for lots of helpful info and support, the key with crohn's is to get as educated as you can and to have a good doc that you feel comfortable with. I would say it may be worth getting a pen and paper and to start writing down any questions you have so you can take it with you to the appt so you don't forget anything. Take your time with this appt and do not leave until you are happy that everything has been covered. What kind of diet have you been advised on post op?

AB
xx

NB Congratulations on the upcoming wedding!
 
xxjemmamxx

xxjemmamxx

Hi Angry Bird,

Thanks for your reply. That's a really good idea, I will definitely take that advice as all I have is the report which is all in 'Medical speak' and doesn't really explain the nature of what they found.

They have not recommended a diet to me upon leaving the hospital, although I kept to mushy foods and soup. I think I moved onto solid foods too soon and ate some foods that I shouldn't have (not knowing that red meats/pork and dairy might be a problem) which gave me more painful BM and what felt like constipation. I went to my GP who gave me some movicol to take as and when needed and was advised to go back onto soft foods for another week and to gradually start introducing more solid food. Then they advised me to avoid dairy, red meats, grains etc. Other than that I'm not really sure what foods don't agree with me yet (although I know salt and vinegar pringles are EVIL from a previous episode) and I'm not on a particular diet.

I haven't been put on any medication yet either, although I don't know if they will be looking to do that in the near future.

Is there any particular questions that you would recommend I ask my consultant? I'm not really sure where to begin!

Jemma xxx
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Things to ask would be about management and the pro's and con's of the different meds that are available, I think it is worth seeing if there is an IBD support line that you can call in case you have any issues and need to get in contact with the team (these are usually monitored by the IBD nurses). Also to see if there is anything further that should be looked into diet wise, perhaps to be referred to a dietician so they can work out a plan with you so you can pinpoint problem foods. Also even without surgery with crohn's you can suffer from issues with vitamin deficiences so these should definetly be kept an eye on, as you have now had some bowel removed you are more likely to has a problem in this area. The two most common deficiences I have seen here is a low B12 and vitamin D so do ask for these to get regularly checked. For now food wise it is best to stick to mushy foods and when you start to go onto 'harder' foods to make sure it has been thoroughly chewed (this is what I was told after my op last year), I was also told to take Milpar which is a gentle laxative for a few weeks so my BM's would still be soft to go through the internal join.
 
xxjemmamxx

xxjemmamxx

Thanks, those are really good questions to ask that I would not have been able to think of without your help. While the care I had in hospital was adequate, I think they didn't really provide me with a lot of support as a newly diagnosed patient recovering from surgery and I probably wasn't told everything I should have been. It's a good thing the internet is pretty good at providing information :ysmile:

I've been taking mulit-vitamins anyway because of my diet but I'll definitely ask about that at my appt as well as all of the other things you mentioned.

Thanks a lot :biggrin:
 
xxjemmamxx

xxjemmamxx

I had my dressings changed today and the splitting of the wound is increasing in size. It's no longer leaking fluid and the flesh looks red and healthy but it still freaks me out to look at it! It's not deep enough to pack just yet although the bottom part of the split which is still partially covered looks deeper and as though it might need packing. You can see a small hole as well in the stretched tissue above the opening so I think it is only going to get bigger. I feel like it is never going to heal :( It's gross.

Has anyone else had any experience of this? I think it's called wound dehiscence, but I don't think mine is as bad as some of the cases I've come across on the internet.
 
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