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Does it get any better?

Hello everyone. My daughter suggested I tried looking at a forum to find people who would understand how I'm feeling, so i did and already I feel like I have discovered something amazing in the stories and posts that I have read.

This is my story.......nov 2012 I thought my tummy pain was a pulled muscle from exercise i was doing to lose weight, but then the pain moved to underneath my rib cage, it got so intense that I went to A & E (really expecting to get a dr to tell me it was all grand and the pain would disappear) hmmmm, that didn't happen. Instead a CT revealed that I had a narrowing of the terminal ileum and enlarged lymph nodes, bloods showed inflammation levels of 200 and any time someone tried to examine me it felt like torture. Then came the diagnosis of IBD, followed by colonoscopy!! Biopsies showed non-specific IBD but as all findings and symptoms point to Crohns that's what they have decided is wrong. I also had an endoscopy, again biopsy results were non-specific and they found a small hiatus hernia. I spent 2 weeks in hospital and lost 12 pounds. The Dr looking after me now is amazing.

This has changed my life. I have been living with type 1 diabetes for 17 years, always impossible to control until last year when for the first time I got it sorted and was doing really well. I was devastated to now have IBD, trying to marry the 2 conditions is a nightmare and I'm struggling to keep sane. On top of that I have had 2 surgeries , I had a sub-acromial decompression on my left shoulder and I had a ganglion and small swelling removed from my right wrist, unfortunately the wrist surgery caused internal scarring so I now have reduced strength and movement plus have constant pain when I use my hand (I'm right handed). I lost my job because the healing process was too slow, so now i have to try to live off benefits, which I'm very embarrassed about and ESA say I'm fit to work but I know I'm not. I have chronic pain in my knees, hip, lumbar back, sacroiliitis, upper back and neck!! An MRI a few weeks back showed osteoarthritis in the lumbar region with a tear and a bulging disc. A week after getting out of hospital I had laser treatment for diabetic maculopathy in my right eye. I am totally overwhelmed at now having to manage a new condition.

I'm sorry for going on so long, sometimes I feel like my head is going to explode. I have constant pain in the lower right portion of my tummy, the meds are having a really detrimental effect on my blood sugar control and I feel lost :( Saw dietitian last week and she said I may need surgey to remove a stricture, I really don't think I can take any more.

I would be grateful for any response, having read some posts I know I'm not alone, but sitting here everyday does make me feel very isolated. Look forward to hearing from you.

Thanks for reading.
What mess are you on for bid. Some take weeks to get into the system. I have just joined the forum but have had crohns for 13 years. I have had a lot of surgery for strictures. Adhesions and go back in tomorrow for op number 6 for resection and division of adhesions which has caused 17 obstructions last year . However everyone is different. With strictures we need to eat low residue diet so think white everything. If you are on meds hopefully they kick in and give you some relief. As for benefits just appeal. Are you in uk?
Hi there,

I live in northern ireland. My Dr started me on budesonide, of which I had 6 weeks course, that didn't help so now on course of prednisolone, it helped ease pain in small bowel but not much change in the ileum area, but as I have decreased the meds the pain is increasing again, have to see Dr in few times time, he had been talking about immuno-supressants as next stage. I have appealed ESA decision and also put in complaint to ATOS as the DRs report was completely void of all the information that I gave, he made it out like I was a lady of leisure!! ATOS cant resolve my complaint and the next step is move on to the ESA chief executive , I don't know if I have the energy to keep going, my appeal was adjourned until the complaint was sorted, so I still have to face that ordeal, again how do I sit through an appeal when I don't know if i'm going to need to dart to the loo, lol.

Thanks for your reply :ybiggrin: Good luck tomorrow, let me know how you get on.
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I had a really bad year in 2010 and I had 3 rounds of IV pred 2 times on oral pred and then budges onside tapering of it onto azathioprine which is the immuno suppressant and finally after 4 months on that went into remission it's hell in the early days but you will start to feel less tired. The pred can do all sorts anger was. My prob on them. Wasn't able to sleep. Had shakes and really high blood pressure. It would be interesting being on pred at any appeal panel lol
Hi lizbeth. Wow you had a great ending to 2012! Sorry your going through all of this. I think of crohns in terms of hills and valleys. Sometimes my hills last forever and it doesn't seem like thinks will get better. Then all of the sudden something fits I to place and things go smoother. The first 5 years for me was really rough. Mind you this was 17 years ago and lots has changed even in that short time frame. But then I ended up in remission for a good 9 years on a drug called Remicade. So things do get better. I have started counting non health related victories. I just started back to work part time after 9 months off even though my health hasn't changed. I thought I'd give it a try. 3 weeks in and I'm still good. I just bought a new car :) . I have one of the most supportive spouses anyone could ever ask for. I have two amazingly cute rabbits (one hates me though, but I still think she's cute).

I was probably one of the most bitter people in Winnipeg last year. Nothing was working out. But so far 2013 is looking up. I am currently fighting with insurance about a pre existing illness clause for my disability insurance but I actually have a good feeling about it. So we'll see what happens.

My advice about your benefits would be to appeal it to whoever you have to. It definitely sounds like you deserve it. Dont let them bully you.
Hi Lizbeth and welcome to the forum! I'm sorry, though, about what brought you here. When I was on prednisone, I had my blood sugar checked a lot so I can't imagine how hard that must be to be on steroids and have diabetes. Has your doctor suggested something else to get you into long term remission?
thank you forall your replies. this is all so new to me that sometimes i think my head is going to pop. managing diabetes has been tough, now adding in crohns and oesteoarthritis its just so overwhelming, then my dr requested that i start a vacination programme in preparation for immunosuppressants, i just wanted to shout Stop the ride i want to get off!! i have 1 more week on steroids then managing blood sugars should be a lot easier, yay!
i know i will learn to live with things and get on with my life, but just at the minute im going to wallow and lick my wounds, tomorrow is a new day :ybiggrin:

im in the process of appealing the benefit decision, im so angry about it that i hope i can fight a good case and not let them bully me.

i have a fantastic family, husband, 2 daughters ( their boyfriends) and a cheeky wee dog, i would be lost without them :ysmile:
good luck with your insurance jlm, hope it goes your way.

Hmmmm I like the idea of appeal panel plus pred, that could be interesting, lol.
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