Worried about my friend..

[Danico85]

Hey there. Just looking for some answers/reassurance regarding my good friend who has been in hospital now for over a month.

His story goes..

Over a year ago he started getting blood in his bowel movements, and he told me about it, and me being an IBD sufferer i begged him to go see his doctor and ask to go for a colonoscopy and get it treated ASAP. he told me he would, so i had no reason to disbelieve him. Anyway, he told me the doctor said he might have hemmeroids, so i took it as he said and thought he just had some piles in there. Anyway, about 6 months later he told me again that he was getting severe bouts of bloody diarrhea with mucus.. when he said mucus it set alarm bells ringing and i told him he MUST see a doctor straight away and demand a colonoscopy. Again he told me he would. We kept in contact and he told me the doctor got him a colonoscopy and it turned out he had a bowel infection that was being traeted with anti biotics etc. So another few months had passed and he phoned me saying his bowels were out of control and he was going to the loo 20+ times a day, i knew in my heart and i told him that the likelyhood is he had crohns or colitis and i tried to scare him into going to the hospital by telling him if he didnt get it sorted he would end up with a colostomy bag. He told me as soon as he got back from his holiday in zante he would go to the hospital. Anyway, against my advice he went on holiday and after being sick as a dog the whole holiday he went to the airport to fly home, the staff told him he looked too sick to travel and phoned a doctor who came and looked at him, he collapsed in the airport and was rushed to the hospital where he spent 2 weeks on a drip. He told me the doctor was 90% sure he had crohns and after the 2 weeks, although still ill (lost 2 stones in weight) was allowed to fly home but only if he promised he would go straight to the hospital in scotland. Well he did that and has now been in the hospital for 3 weeks. I went to visit him last week and he looks unrecognisable, hes now a bag of bones and barely has the energy to pick up his mobile phone, i was gutted for him. Anyway, they told him the likelyhood is he would need a bag but would try him on a drip of steroids, they have given his body until monday to respond to the steroid and they told him if he doesnt respond then they will give him the operation to have a colostomy bag fitted, they also told him and his mum that his operation was life threatning because of how week he is. He phoned me in tears and scared for his life etc.. it was heartbreaking to hear a man of 28 in so much pain and fear. They told him his bowel was so infmammed that it was near perforation.

So i have a couple of questions for anyone.

- should the doctors not give him more than 3 days on steroids to see if his bowel improves??

- and is this operation really life threatning for him or is the doctor just saying it as a worst case scenario??

I myself have indeterrent colitis, they dont know if its crohns or UC, ive never had surgery as yet so im not clued up on these operations and i want to try and give him some encouragement going into the most terrifying couple of days of his life.

Any input would be much appreciated..

Id also like to add that me and 3 of my closest friends all have IBD which is strange in itself..

Nicky

 

[DustyKat]

Hey Nicky,

Whoa, I am so very sorry to hear about your friend.

Do you know where his Crohn's is located and if the stoma will be permanent?

Sadly I have seen various parts of your mate's problems in my own kids.

Firstly the surgery and the physical state he is in: My daughter was undiagnosed when she had emergency surgery with what turned out to be a ruptured bowel. She had been sick for 18 months and her condition was very poor indeed when she went for surgery, she looked almost anorexic. She was in a serious condition post op and had to spend time in ICU BUT she pulled through just fine and had no complications during her recovery. She did not end up needing a bag. It took her quite a few months to get back to 100% but in about 10 days time she will have been in remission for 7 years.

The reason for surgery: Sometimes your condition and the resulting complications mean that surgery can't be delayed. The medication helps stabilise you but it can't pull you back to health. My son was in this same position at one stage, he was in hospital for nearly 4 weeks and it took 2 goes for him to respond to the IV steroids and antibiotics but if he hadn't the second time he would have had to have surgery there and then and a temporary stoma. As it was he was able to and hold off surgery for a further 3 months which allowed his inflammation to settle.
The thing is if you can't hold surgery off they will often do a temporary stoma. The reason for this is twofold. Firstly it means that in the long run you have less resected bowel because by bypassing the inflamed area it allows it to rest and heal as no faecal matter is passing over it. Secondly when the bowel is so acutely inflamed you need make sure the resected margins are well free of disease because you can't join inflamed bowel ends, if you do it will breakdown. So again by avoiding all inflammation you end up removing more bowel than is necessary.

He is fortunate that he is now in good care and they will do their utmost to avoid surgery if they can. I hope he responds to the IV meds, good luck!

Dusty. xxx

 

[Danico85]

Thanks for your response Dusty, its really been helpfull. i appreciate it.

To answer your questions, he has severe inflammation in all parts of his bowel i believe and according to him the surgeon told him if the steroids and anti inflammatorys have a massive effect and work wonders from now until monday then they will be able to keep him on them and ***** him and hopefully bring him back from the brink. Failing that then they told him he will need a full removal of the colon and pernement colostomy bag. So we are all keeping our finger crossed for him. he said today that his bowel movements have been less frequent but still has no control over his bowel, which has resulted in him lying there with a nappy on, which is embaressing for him.
My personal view, having seen him, i believe he will be too sick and weak to respond massively to the drugs, i personaly believe 3 days isnt enough to give him to respond to the meds, but they have told him his bowel is dangerousley near perforation and thats why he cant eat or drink etc.
He tells me he wishes he listened to me a year ago when he first got blood in his stool. But its easy to say that now, but if i ever hear anyone else getting bloody stools i will personally drag them to the doctors for a proper examination because i dont want to see anyone else i know going through what he has.
I keep telling him the hardest battle is in your mind and accepting what you have then dealing with anything thats put infront of you, but it all happened so quickly and he didnt really know what IBD was and still has limited knowledge..
I wish we had more media awareness because from where im sitting... IBD is becoming a fast growing epedemic and something has to be done.

Thanks again

Nicky

 

[DustyKat]

I hope the meds do the trick for your mate and he gets a chance at beating this without the need for extensive surgery.

I know what the surgeon is saying about the meds because normally an IV hit with steroids and antibiotics will pull those numbers down pretty fast if they are going to work but sometimes damage and complications are beyond what medications can treat. Matt was given the same ultimatum. The IV went back up on a Thursday, IIRC, and he was given until the Monday to prove response, if the bloods weren't to the team's satisfaction on the Monday then he was was going to have TPN put up for about 10 days to build up his condition and then have surgery.

As hard as it is for your friend, and all those that love him, he is far better to have his surgery under planned conditions rather than emergency ones and if it does come to him needing surgery it really will be a case of saving his life as non response to meds at this point means that his condition has the very real potential to kill him.

Dusty. xxx