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New to Forum - hello

Hello my name is Denise, before I explain a little about me I just wanted to say how useful this forum has been. So thank you everyone!

I was diagnosed with Crohns back in May 2000 when I went in for for what I thought was an emergency appendicitis, I awoke to find out I had in fact had a right Hemi-colectomy. It was a a bit of a shock to the system and took a good 8 weeks to recover.

I coped with the symptoms pretty well, didn't need medication but had regular check ups for the first 5 years. I had my first blockage in 2007 and then carried on with life having no check-ups as by now my consultant had retired until 2011 when it would happen more frequently. In 2012 I was admitted to hospital but discharged the next day with no follow up. I had to go back to my GP who could feel something was not right in my abdomen, they then referred me to a new team. Had colonoscopy, MRI etc. which showed I had scar tissue at my anastomosis and it was virtually blocked.

I am now recovering from a ileocaecal resection (5 weeks ago today) my insides feel great. Tough at the beginning but I kept telling myself this time next week you will feel so much better than you do today and I did. I was on the enhanced recovery programme and I followed all the advice given to me but it does makes a difference, I had to force myself to get up and walk around the ward no matter how painful but I do believe it helped me. Unfortunately my incision has an infection and has split open which means I have to go to the hospital daily to have my dressings changed, but inside I feel fantastic. After nearly a year on a low residue diet I can start to re-introduce more things to my diet :)

They will decide if I need to have medication at 6 months when I have my follow up colonoscopy, but in the meantime I will be starting on B12 injections.

Well that's me and I look forward to chatting with some of you soon.
 

nogutsnoglory

Moderator
Hello welcome to the forum Denise it's interesting that we have a similar story. I had an emergency rush to the hospital and was told that I had appendicitis as well, turns out that that appendicitis was not appendicitis and I actually had major inflammation from Crohn's disease. Sometimes you need an opinion and doctors don't know what they're talking about, in my case I was able to avoid surgery for appendicitis when I had a Crohn's surgeon come to let me know I didn't need surgery for appendicitis.
 
Hi there nogutsnoglory, I wasn't so lucky as to avoid surgery the first time as my bowel had perforated but I totally agree with you on having the right doctor. Other times when I have been admitted its as if they don't know what to do with me, but thankfully now I have a great surgeon, GI consultant and a fab Bowel nurse. It's so good to finally be getting the right care after 13 years it makes such a difference.
 

Honey

Moderator
Staff member
Hi there, Denise and welcome ,
I am glad you are feeling better after being through so much. It is good they picked up on the right diagnosis and did not go along the appendicitis line! I, on the other hand had my appendix removed years ago, continued with digestive problems, diagnosed with Diverticulitis and M.E. years ago. I was told to live with it, until 3 years ago I suffered constant tummy pain. Eventually diagnosed with Crohns. So it depends on how clever your Consultant is at reading the signs!!! I hope your tests go well and you continue to improve. This forum is great for sharing experiences and giving one another support. Let me know how you are doing?:welcome::panda-wave-t:
 
Hey Rosie and a big warm welcome from me too. I'm sorry your having trouble with your wound and I hope they get that cleared up for you soon, but it's good to hear you sounding so upbeat.
Appendicitis seems to be quite a common first misdiagnosis, I guess when pain is mainly LRQ. I was told first of all that I had a grumbling appendix, but wasn't thought to need surgery and it was four months later that I got my Crohn's diagnosis.
After 2 years trying to battle the inflammation and a bowel to bladder fistula with meds, surgery seems to have done the trick and I feel great too. No meds as they reckon my disease is drug resistant.
Looking forward to seeing you around and hearing how your recovery continues.
 
Well I still feel great inside which is so nice, but tiredness has really hit me this week, think I'm probably trying to do too much, but I can't bear to just sit around. Had my first strawberries yesterday not had some in over a year, they were delicious!

It's now day 27 of going in daily to have my wound dressed etc. the infection has healed but I was then allergic to most of the dressings and now my wound keeps over granulating ( I have learnt so much about wounds) so today it was their 7th attempt at silver nitrate, and I have to say it does sting quite a bit. It seems to shrink it right back and then after 2-3 days its over granulating again, this time they have really zapped it today and the same again tomorrow so I'm hopeful that my daily visits to the hospital will be soon be coming to an end although they say it will take another month once it stops over granulating for it to heal.

Hope everyone is having a good day :)
 

scottsma

Well-known member
Location
Tynemouth,
Hello Rosie and welcome.I'd just wanted to say how good it is to hear how positive you are.Good for you girl.As Frank Spencer used to say "Every day in every way,I'm getting better and better".........Very best wishes.I'm sure you will bring a lot to the forum.
 
Ah thanks scottsma I try to be positive, is not always easy there are times when it can knock you back but I'm not going to let it beat me. I've learnt life is too short so grab every opportunity it gives you. I have taken the good info from this forum and certainly used it for after my operation it really helped me so I hope that I can be of help to anyone in the future.
 
Finally 8 weeks after surgery my wound has healed enough so I no longer have to go to the hospital each day.
I went back to work this week; shock to the system, I do the accounts/payroll for a charity and have come back to 3 months of accounts to catch up on. Was not impressed, especially as I came in to run the payroll for them 14 days after surgery!
First day back was payroll run again and I arrived at 7;30am to get on top of things to find my computer wasnt working ended up doing a 10 hour day on my first day, I fell into bed that night. Oh well thats life and I must not grumble too much.
I am still re-introducing foods I have not eaten in over a year, some agree with me but others let me know im not ready to eat them yet lol. I have been so lucky in that I havent suffered with much diarrhea, I always seem to go the other way, my bowel is so sluggish at times, and the pain where its trying to work.
The hardest part now is fatigue, I can have a couple of days feeling great and yes I probably do too much and then suddenly it hits me like walking into a brick wall. I need to learn to pace myself a bit better but the tempatation to do so much when you feel good outways the pacing myself. I am so glad that I had this operation and with each passing week there are improvements.

Hope you are all keeping well :)
 
No I havent started B12 yet but I think I will book an appointment with my GP to enquire when I can start. My GI said I will have reserves which I know, but I have been border line on my level since my last surgery 13 years ago so I think my reserves will run out sooner than later. Sorry to sound dumb but what is the significance of your magnesium level as I have not had a blood test since my post op one.
Thanks for your response
 

David

Co-Founder
Location
Naples, Florida
I bet you're low in B12. Definitely get on that. Magnesium is another common nutrient people with Crohn's disease, especially with terminal ileum resection, are deficient in. One symptom is fatigue, but there are many other symptoms you can read about here.

All my best to you.
 
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