HIStory

[mryd2akrny]

I am married to the most wonderful man in the world diagnosed with CD this August. To give the full picture of his journey, I have to back up 5 years...5yrs ago he began having problems with his stomach what he always explained as a burning hollow empty feeling that he just couldn't get to go away. After months he went to his primary who simply put him on protonix. He continued to have this feeling in his stomach and one morning awoke with severe abdominal pain. Rushed to the ER, underwent an emergency Bowel Resection as his small bowel had ruptured. He was told his stomach lining had sloughed off and he was growing another stomach in his small bowel. No mention of crohns. Then this July he began with similar stomach pains as 5 years ago, this time however, after just 4-5 days of this burning hallow feeling as he describes he goes to the hospital, ct scan shows a small bowel perforation, this is the first time he hears anything of possible crohns, bowel rest and antibiotics he comes home, follows up with gi, schedules colonoscopy for 3 weeks out, makes it 2 weeks and ends up back in the hospital with a bowel obstruction. Bowel rest again and he udergoes colonscopy. He has now been on Pentasa 4 gms, prednisone 60mg, protonix.

 

[Crohn's 35]

:welcome: to the forum, sounds like a nightmare for your husband. You must be worried like heck. A colonoscopy is a good idea, and biopies will tell a bit more. He sounds like a good candidate for Remicade, it heals and stops fistulas and other problems.

Bowel rest sucks especially for men, because most love their meat. Ensure with protein and calories can help abit. Bowel obstructions are the worst pain, to me there is no greater pain. Prednisone is a love/hate drug, hopefully he doesnt go on it much, it is a calcium eater and so are antiacids...so make sure he is on good amounts of Calcium and Vitamin D3. Fish oil helps too. But because he is obstruction best to get most things in a gelcap or capsule, tablets can get stuck too. Glad you found us and please keep us posted and hugs to you!

 

[mryd2akrny]

Thanks for welcoming me to the forum Pen and yes it has been a nightmare for him. I a VERY worried. Disappointed that five years ago we didn't do more investigating on his issues. At the time we where just so relieved he was doing good. Never once did I question the reason for his original resection. Grateful that he never had any further issues until just recently. He had his colonoscopy with biopsy in late august and it is CD. He is certainly a man's man. Loves his meat, diary etc. He is now on a lactose free diet and is in a trial and error period for all other foods. Prednisone is awful!! He always feels he is "Jacked up" as he puts it. Sleeping just a few hours at a time and averaging only 4 hours nightly. They tried just last week to ween him from 60mg to 40mg but he began having issues by the 2nd day so he is back up to 60mg. Have an appt with his gi next week and am certainly going to discuss Remicade at that time. We know of one fistula that he already has so want to do whatever we can to prevent more. He does take fishoil has for years and has just started taking other vitamins and supplements. With him getting calories is not an issue...he eats me out of house and home. Still battling weightloss even though he eats like he does and have had him on different protein shakes for about 7 months as he has lost 55lbs over the past year obviously due to malabsorbtion. Have to agree the pain with a bowel obstruction is something I would never even wish on my worst enemy! Praying he never has to go through that again! I am so darn angry at myself over all this as I am a nurse, (trauma is my specialty not CD) I knew something was up but couldn't get him to listen. Wish I had been more persistent with him and Docs when he was admitted in July for the micro perforation. I threw out question after question for those doctors, got different answers from each one everytime, maddening, frustrating. When he had his bowel resection 5 years ago they focused more on a secondary area of the bowel where they happened to find a meckels divertculm that they removed as well at that time. In july the surgeon kept saying he thought all this was due to not getting all of the meckels, they thought maybe some was left behind thus giving him the perf. In my heart of hearts I know better. Had to beg and plead for the colonoscopy, then threaten to find a different dr who would do it before they reluctantly went ahead and scheduled it. I personally feel if they hadn't goofed around, if they'd have done the colonoscopy right away, we would've had a diagnosis and possibly avoided the obstruction issue all together. I am soooooo glad I found this forum, just wish I would've found it a month ago!

 

[xJillx]

Hi and welcome! Don't beat yourself up over not being more questioning with his first resection. If the doctors didn't mention Crohn's, it certainly isn't your job to bring it up. Also, if he felt better afterward, you thought you were in the clear. I wouldn't have questioned anything either.

But I am sorry to hear it is Crohn's that is at the root of the problem. How long has hubby been on 60mg of pred? That's a high dose; I sure hope he is showing an improvement (minus the side effects) and can soon wean off successfully. You don't want to stay on that drug too long due to those nasty side effects. The goal is to get the inflammatin in check with the pred and then the Pentasa will keep it away.

I sure hope hubby starts feeling much better soon!

 

[mryd2akrny]

Hi Jill! He is going on his 4th week of prednisone. I know it is a very high dose....he hates the way he feels on this. I am hoping they can wean him off when we go to the gi dr next week. His primary did try to take him down to 40mg last week however after just 2 days on the lower dose he was having terrible abdominal pain again so they reupped it to 60mg. I am trying not to beat myself up to bad over the first resection, I just wish I knew then what I know now! I'm sure alot of folks can relate to that. It just tears me up to see this man who lives his life to the fullest extent every single day be brought down like this.

 

[xJillx]

Maybe instead of dropping 60mg to 40mg, he should drop to 50mg. Perhaps the 20mg drop is too drastic. Sometimes people even need to step down by 5mg at a time.

 

[Crohn's 35]

Yes I agree, some people need a very slow taper, and having a colonoscopy being on pred can give a false negative reading. My highest was 55mg of pred and lost a boyfriend 20 years ago lol over being hyper and bad temper.. it is truly nasty stuff and will suffer more down the road. As Jill says you can't beat yourself up, not all doctors and specialists can spot crohns right away, IF they can get past their ego's (sorry guys not man bashing) it happened to me and I was angry too , but it causes flares to erupt and not worth it.

Just be supportive and understanding count to 10 if you have too lol. We crohnies need outsiders to understand or be compassionate. It is a hard road for both of you. :hang: