Just Saying Hello!

[Reiki2]

Hi, just found this forum and as I've never done it before decided to give it a shot! I was diagnosed with Crohn's disease 40 years ago at the age of 16. Our GP was convinced it was all in my mind and had something to do with my age. Diarrhoea for 6 months with stomach cramps. A very active imagination me thinks!
Over the next 6 months anti inflammitories, steroids and finally 3.5 feet of bowel lighter, I looked anorexic (6st 2lbs).
That was probably the most dramatic aspect of my life with Crohn's apart with the foods that won't hang around long ( I'm sure you know what I mean), that constant need to source a convenient loo (especially on holiday) and the bathroom episodes when someone is in the bath/shower and you just gotta go YESTERDAY!
Jump forward to 5 years ago and add a sub total obstruction caused by scarring, adhesion and a hernia! Deepest joy! Got fixed and all seemed well. Until, a few weeks ago. Now we have a flare up. Swollen abdo and pain. Out comes the steroids (still on them) a future of permanent anti inflams. Bone density scan requied (osteoporosis) so on calci chews (yum!) and colonoscopy (CT showed thickening). And don't forget the omeprasole!
We are doing a great impersonation of maracas!

That's the canned version. I still have to get back to work with my pxxxxx off poo tube. I am a happy person really but in the last 40 years I have not let rip! So Thankyou all for the opportunityoo:

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear that the tum is acting up again. Have you been on any meds between the flare ups you have had and if so what were you on? Is there any plan to start you kn anything after the steroid course? Also given the op you have had are your vitamin levels ever checked?

There is a lot of helpful info and support here so do have a good look around.

AB
xx

 

[Mary:)]

Hello Reiki2!!!

You have had Crohns a long time eh? You seem so Jolly and your post made me smile...Thanks for that!!
I was going to ask also what meds you are on for your Crohns? I bet you have seen alot of changes in meds over the years.

 

[Reiki2]

Hi Angry bird and Mary,

Was originally on Salazophyrine. Horse pills lol. Got fed up taking them so being young and hot headed binned them! Maybe not the best plan. No meds over the years just dealt with the symptoms. Avoided where possible the triggers (onions tomatoes pork etc). Have been quite lucky really.

Didn't have check ups (oscopy phobia)! Probably another bad move. Only sought help when absolutely necessary. All was reasonably ok until 5 years ago. Then I got obstructed. Adhesions from the original surgery, hernia formed and loop of bowel got stuck! That was a bad place. At first I thought I had a bug. Made biriani on the Friday evening. Saturday am woke with abdo pain and nausea. Called locus doc on Sat pm and he said I had gastroenteritis. With no bowel sounds or movement? Hello! Paracetamol and prochloraperizine! Useless!

By Monday pain, vomiting and drifting in and out of reality. Went to hospital and was admitted. Large cannula, naso gastric tube, urinary catheter, ct scan. Surgery that evening for freeing of adhesions and hernia repair. The bliss of an epidural was fantastic.

Was much better apart from a hughmongous headache. Couldn't understand it. Discharged home on the Saturday and was sick every time I stood up because of the headache. Started to think! When they were putting the epidural in they pranged a nerve (extremely painfull at the time). I wondered if I was leaking CSF. Sent text to consultant anaesthetist friend (I work in Day Surgery). Yep spinal tap! Loads of fluids, analgesia and caffeine! Took about 2 days but worked otherwise I would have had to have a bold patch. Result!

Been fine since then until my recent gastric upheaval and PPT (as mentioned in previous post)! I am impersonating a 6 month pregnancy at the moment ( not a good look at 56). Thankfully not much discomfort. Taking my meds like a good girl and sampling the delights of low residue diet and Modulen IBD (god help me I like it)!

Again thanks for letting me vent. It makes a difference when people know what you are on about. I have tried not to let it rule my life. If I want a cream cake I have one and if I want Indian food I make sure I am not at work next day lol. I do need to slow myself down a bit and be more sensible if I want to avoid more surgery (which could be on the cards). I think I have been in a little bit of denial for a long time. This forum is great. Sorry for rabbiting on!

 

[Reiki2]

Meds:

Prednisilone (until May)
Calceos (calcium and vit d supplement )
Octasa (mesalazine)
Omeprasole
Modulen IBD

 

[Angrybird]

Looking at your current meds it doesn't look to me that you are on any type of long term maintenance med to keep things settled, when are you next dye to see your doc to discuss things treatment wise going forward? I know what you mean with the Modulen out of all the different shakes I have been on I liked this the best especially with the banana and strawberry flavourings you can add to it.

 

[Reiki2]

I will be having a follow up in a few weeks. Discharge letter says 6 weeks from discharge. Dexa scan and colonoscopy as outpatient. TPMT blood test (whatever that is) before clinic appointment. Prednisolone reducing regime and low residue diet. I am thinking of broaching the subject of naltrexone. My brother has MS and is on it. He says it has been known to improve Crohn's. Don't know is my gastroenterologist is forward thinking enough to consider it or if it is suitable.

 

[Karen]

And welcome aboard !!!

 

[Reiki2]

Just looked at TPMT. This site is great! Maybe discuss long term treatment when I see him. He said I will be on medication forever ( that's a long time)!

 

[Angrybird]

It sounds like with the TMPT test that Azathioprine might be the med your GI is looking into for you - please keep us updated on how things go with the appt.

 

[Reiki2]

Will certainly keep in touch and let you know. Wish I had accessed this sight a long time age. I am very much behind and in the dark about all of this stuff. That will teach me to bury my head in the sand!

Thanks xxx

 

[Reiki2]

Weill it all went slightly pear shaped last week! Had Ben feeling a bit breathless with palpitations. Phoned work to say I would be back this week. Boss said I didn't sound too great and suggested I go to doc before going back. Made app for following day (8.30 am so early start). Not a problem, been waking up between 3&4 am anyway (I suspect the steroids to blame).

Doc examined and questioned and decided to send me to A&E to rule out a PE! Went to the hospital had bloods ECG chest X-ray and through questioning. I am on Nortriptaline for back pain and when in hospital forgot to take it. Started it again when I got home and it was the day after that I started the shortness of breath and palpitations. Woopse! Not suppose to stop them suddenly!

Needless to say I am not back to work today. Can't be looking after patients when I can't do much without puffing its a little better now so hopefully back to work next week.

Getting fed up now but the longer I am off the more I don't feel like going back! Lovemy job but retirement is looking much more attractive ese days!

Love and healing thoughts to all fellow Crohnies and their loved ones :ghug: