Crohn's/Illeostomy

[Amber Caitlin]

Hi everyone, I am new here. I had Crohn's disease for 12 years before I had to have an illeostomy. I am now experiencing Crohn's symptoms after 12 yrs of an illeostomy. I was diagnosed with Crohn's after taking a flu-like virus which wouldn't clear up. It resulted in a spell in Intensive care where my Crohn's was eventually diagnosed.(The virus also affected my heart/lungs/blood) At first I was put on Asacol, then Pred for the flare-ups. After 12 years, it gradually got so bad that I ended up taking a massive absess which led from my lower bowel to a couple of centimetres from my heart. Due to 2 imcompetent doctors, (my GPs) the abscess was put down to a pulled muscle even tho I had a lump protruding from my side like the size of a large orange. Eventually I got admitted to hospital where the abscess was properly diagnosed and lanced under general anescetic - (please excuse spelling) I was then told I would need an illeostomy, After the 1st few years, my illeostomy settled down and, apart from having to stay off fibre, veg and most fruit, except for berries, everything was going fine till the end of last year. Now I am experiencing loose movement into my illeo bag (stopped by immodium and starchy food), and bad muscle cramp (round stoma and backache) sometimes stopped by Audmonal (alverine citrate), painkillers (codis 500) Ibugel for backache and the good old hot water bottle. Other times nothing helps. If anyone can suggest anything else for muscle cramp due to Crohn's/illeostomy I'd be most grateful. Just on closing - my GP gave me a telling off one night when I ask him why he's only gave me 1 packet of pain killers - he said he had a budget to stick to - so I can't see him ok-ing any new tablets!!

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear you are having some troubles again. Out of interest are you still seeing a GI at all? Are you on any meds for the crohns? I have not had an illeostomy so could not advise on what could help here but please do not hesitate to check out our stoma forum to have a chat with the folks here about this: http://www.crohnsforum.com/forumdisplay.php?f=46.

Also not sure about your GP, he sounds a bit of a twonk, is he always like that?

AB
xx

 

[Amber Caitlin]

Thanks for your post Angry Bird. I appreciate it. Sorry to sound a bit dopey, but what is a Gl? I'm not on any meds at the mo. Next time I get a blood test done I will ask the nurse if she would take a b.t. to check for Crohn's. She used to be a hospital nurse and looked after me in hospital. Now she works for my GPs as a practice nurse. Both the GPs in the practice have got very aloof and don't concentrate on their diagnosis. The surgeon who lanced the abscess and done my surgery, was like a lighted fuse when he realised how incompetent both GPs were. If he could have had his way, they would have been struck off.The male GP seems to be in a mood all the time. Even the female GP can be a bit nasty when the mood takes her. Thank goodness I have 2 lovely stoma nurses who I see when I need to. They both tell me to ring up any time I want.

 

[GutlessWonder86]

Hi Amber, a GI is a gastroenterologist. As for your MD only giving you one packet due to budget?? um, that's ridiculous as you are the one paying for the medication out of pocket. I just had my pain medication picked up at Target Pharmacy today and paid $10 copay.

If you don't live in the United States, I have no idea how paying for medications works.

I've had my ileostomy due to Crohn's since I was 17. I had an abdominal abscess along with a 102 temp. last year. My GI surgeon lanced it in the ER as the operating rooms were booked. I was given a local as well as some really good pain medication. Then I was admitted for a few days hooked up to an IV antibiotics.

I'm still dealing with the wound not healing completely and I have another staph infection so I am on ampicillin 875 mg. I'm going in for a clinical trial under my infectious disease MD's care at his office so I won't have to pay for anything which will help with the bills I'm getting now due to 2 exploratory surgeries from the abscess last year.

Feel better and hang in there.

 

[Angrybird]

I think you need to be seeing a gastroenterologist, it could be you have active crohns and it really shouldn't be left untreated. See if your GP/stoma nurses can help with this?

 

[Amber Caitlin]

Hi GutlessWonder, thank u so much for your reply. I'm from Northern Ireland. Over here anyone on Income support or disability benefits get their medicines free. Operations/hospital stays are paid for by the NHS - National Health Service. Doctors get a budget from the government to cover the cost of patients medicines. Apparently my GPs are w-a-y over their allotted budget but that should be no concern of the patients. They continue to need their meds. If both of them haven't be careful with their budget that is their fault and shouldn't impact on how much medication his/her patients gets. I felt like I was begging for extra painkillers which I needed - I only take when I am in a lot of pain. I would see through it if I took the p.k.s just for the sake of taking them, then he would have a right to refuse to give me more.
Because of getting the illeo, non of the GPs/hospital docs ever suggested a GI. We will see what happens when I get my next blood test done. I will make sure my nurse takes a blood test for Crohn's. As I have an underactive thyroid, that is usually all that is tested tho last year, because of reaction to the flu ***, I got a whole battery of tests including red cell count, white cell count, kidney function, bladder function, muscle tests, U & E's, full blood count etc all of which came back normal. In all, I got tested for about 15 different things all of which were normal.
I do hope your wound heals up soon. You must be in a lot of pain with it. I hope it doesn't take long for the anitbiotics to kick in.
Many thanks
Amber

 

[David]

Hi Amber and welcome

I don't have any great advice for you but wanted to reply and let you know I hope that things start to improve for you.

*hugs*