Hi, just saying hello!

Crohn's Disease Forum

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Hi, just saying hello (and need a hug)!

Hi! - I'm sitting here (well, trying to sit!) in severe pain, so started searching the 'net and arrived here... I've been diagnosed with diverticulitis for a couple of years now (symptoms go back 5 or 6 years) plus, it now seems, Crohn's (most likely, specialist thinks) or possibly ulcerative colitis. Tests are still ongoing but repeated antibiotics and prednisolone (currently still on this) haven't brought the latest flare-up under control - spending half my life runnng to/ sitting in the bathroom/ bleeding heavily/ and PAINNNNN!!!!. Waiting to start Humira injections (such fun!) and wondering where I go from here...

I'm normally pretty cheerful and uncomplaining (honest!) but feeling a bit down and sorry for myself right now - will bounce back I'm sure when this subsides enough to let me get a couple of hours sleep (camera up the rear again yesterday hasn't helped matters!). Best regards and good health to everyone on here..., David.
 
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hi i just got diagnosed a week ago so in sure i cant b of much help for ya but i hope u r better soon
 
Hi David, welcome. I am new here as well, but not new to Crohn's.

I am having a hard time taking humira, although it provides me with full remission...silly really.

Well, I think it is normal to be down when you get the diagnostic: youre in pain, pissed to have this, stuck with meds, and prednisone doesn't help the mood. But it gets better. The more you accept your disease and work hard to live with it, the easier it gets.

Find out what you can and CAN'T eat (For me, I can't have red pepper, although orange, yellow and green are fine, no corn, popcorn, or fried calamary even in full remission)

You know what? The good news is that they have narrowed down to crohn's or UC, once you're diagnosed you can be treated with the right meds and start getting better.

Take good care of yourself, you will get better sooner than you think :)
 
Hi David and welcome to the community. I'm sorry to hear you're having so much trouble right now :(

We have a Humira support forum if you would like to connect with others who are on it as well.

We're here for you anytime you need us! :)
 
Hello David and welcome to the forum. I can understand you feeling down but know you have come to the right place for lots of helpful info and support :) What dosage are you on for the Pred? Have you ever noticed any improvement whilst on it? One thing that may help with symptoms is a low residue diet or perhaps even going onto a liquid only diet such as enteral nutrition, this can really help calm the bowel down and also helps with pinpointing problem foods when you start to re-introduce them....

AB
xx
 
Hi! Thank you all for your replies and encouragenment. I'm on 30mg of Pred at the moment, down from 40mg on a tapering plan. When i started the 40mg dosage there did seem to be a slight improvement after 3 or 4 days, but it didn't last - and after two weeks I had a colonoscopy and since then (posibly due to the purging, or maybe aggravation of the camera?) I'm having a really bad episode. The specialist considered admitting me to hospital on Monday, to give pred at higher dosage via IV drip, but after sigmoid camera examination decided that pred hasn't worked well enough, so switching me to Humira injections (so Pred is now just continuing to reduce as apparently you shouldn't stop suddenly?). I also had X-rays and blood tests this week as they want to be sure I'm clear of infection before starting Humira. (I'm also due to get an MRI scan and endoscopy and capsule exam next month) I'm waiting for a telephone call from my G.P. today to see if there's any stronger pain-relief medication I can be prescribed as at the moment it feels like a knife is being twisted inside me. :( I've put myself on a low residue diet, although I don't feel much like eating anyway - the strange thing is that I'm still rushing to the bathroom about a dozen times a day (worse in the mornings, although pain seems worse at night)!? So far I've been unable to work out what, if anything, in my diet worsens (or eases) my symptoms. I've tried cutting down on fats, acidic foods, spicy foods, nuts/ seeds etc - but it seems that when things are calm I can eat/ drink anything without problems - but in a flare-up, nothing seems to stop it...
 
Doctor prescribed morphine syrup - I've just taken the first dose and am hoping for relief soon...

Postscript on the pain relief - it's definitely taken the edge off the pain. I've started with a 5ml dose, but can increase to 10ml (and plan to do that tonight to ensure a good night's rest).
 
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Hi David. Based upon what you're describing, I wonder if you picked up some c.diff around when you went in for your colonoscopy. It's something you may want to discuss with your doctor.
 
Thanks, David - you're quite right, I had to take a sample for testing yesterday as the doctor said he wanted to check for that... (great minds think alike!)


(BTW, I just noticed where you live - it's really lovely there! My wife and I had holidays for a few years running at a friend's house in Sarasota - we loved it - and got to visit Naples a few times. We haven't been back for about five years now, and I'm trying hard to persuade my wife back onto a 'plane sometime in the future (she's a REALLY nervous flyer!) to get back to Florida - I envy your sunshine (particularly as we're having a very wet "summer" here in the UK!) :)
 
Hi David, please let us know how the c.diff results come back as I'm quite curious.

Yeah, Naples is great! I really like it here. If you ever find yourself in the region again, hit me up :)
 
Was all clear of C. diff, but emergency admission to hospital for a week meantime, due to intense abdominal pain (even morphine wasn't holding it!) and bleeding. Given fluids (dehydrated), antibiotics, iron and steroids via IV. Then first infliximab treatment (had to be given over two days as I - very unusually, I'm told - had a bad reaction with my temp spiking high and tachycardia. As second half (next day, given over twice time) and subsequent follow-up (as day patient, yesterday) went ok it looks like the initial reaction was down to my poor condition at the time. I think I may have an anal fissure, though, as rectal pain since last sigmoid camera exam two weeks ago is acute and, at times, almost unbearable (doesn't make for comfortable bathroom visits!). Surgery was a very close call, due to risk of toxic lateral colon (surgeon said) but they held off as long as they dared due to my previous peritonitis and subsequent nylon mesh repair of my abdomen which, I'm told was giving the surgeon "gray hairs"! Stiill very weak/ sore but hoping that infliximab is going to work...
 
It's been quite a while since I last posted here - got overtaken by events really, so here's an update. After suffering for a few years with diverticulitis, I was diagnosed last year after about four months of heavy rectal bleeding, frequent evacuation (14-20 times a day), pain and weight loss (56 pounds in under four months) - this in spite of repeated antibiotic and steroid treatments. I was taken into hospital for yet another colonoscopy and biopsies, but instead of being allowed out same day (as had happened previously) they kept me in as my condition was deteriorating rapidly. I ended up having six units of blood and two of iron by IV and ended up with a loop ileostomy. That was six months ago and although I've improved in physical condition (ie not obviously anaemic) in spite of Infliximab treatment (now ceased, as didn't help), massive amounts of Predisolone (now also ceased) and Humira (ongoing) along with vitamin and iron supplements, I'm still needing to go to the bathroom 6 to 8 times a day on average and bleeding/ small discharge (stool?) the size of small peas from the rectum each time (along with bad colon cramping). I had another exam under general anaesthetic last week and apparently the ulceration is still present and quite inflamed and it looks like I'm facing further surgery to either convert the loop ileostomy to an end ileostomy (to prevent any possible passage of food) or partial, perhaps complete, colostomy. I'm not looking forward to further surgery, but can't live with the frequent need to go to the bathroom, rectal bleeding and pain (I was on daily Oramorph for almost six months, but stopped due to my concerns about addiction - now I mostly just grit my teeth unless it gets too bad) - also the tenesmus (almost constant feeling of needing to go to the toilet, even after I've just been) is miserable and debilitating. Just to add to the fun, at present the skin around the ileostomy and also where the adhesives fix the pouch is very sore and inflamed, itching and burning so (having seen the stoma nurse today) I've now got a week or two of "fun" trying to get that under control. Crohn's sucks!
 
I am sorry to head that you have gone through all this and still need further surgery:( Have you looked at our stoma forum at all?The folks hers may have some advise on what to try for your sore skin. Do you have a date booked yet for the next op?
 
hi i just got diagnosed a week ago so in sure i cant b of much help for ya but i hope u r better soon

Welcome to the forum tonya. You will find a great amount and support in here. If you want you can share your story with us.
 
@angry bird BTW - you have a game named after you! ;) : Hi! Thanks for your reply - I will have a look at that forum, thank you. I don't have a date yet for the surgery - I'm waiting for a joint appointment with the surgeon and specialist to discuss the options - hopefully soon.

All the best,

David
 
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I am do not know if posting a PURPLE ROSE is good for a man ... but right now I just want to say HELLO and to say WELCOME and to send over lots of LOVE UR way ... and to tell U that you will find plenty of support here that your looking for !!!
 
I was once soo hooked on this game, have a little less time now that the piglet has arrived. Please keep us updated on how you get on.
 

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