Partner of Chron's Sufferer - HELP!

[L_J]

Hi,

Stumbled across this site whilst doing my usual google searches and thought i'd join. My boyfriend was diagnosed with Chrons this April after suffering with abdominal pain and constipation for 12 months. Since diagnosis things have gotten a lot worse.

The diagnosis was accidental really, after suffering for about 6 months he went to his GP who sent him away with laxatives, this happened 3 times. It got to a stage where the pain got so bad, he had dropped to 8 stone and could not even keep down water, so i rang an ambulance. At this point the hospital did a CT scan and said it was Chrons. He was referred for several more appointments and finally a colonoscopy (each appointment taking 6 weeks to get, so a very lengthy process). When he went for the colonoscopy, the results proved inconclusive as he was in so much pain they were unable to complete it properly.

They have tried him on azathioprine for 6 months and gave paracetamol and codine for pain. The azathioprine didn’t seem to help at all and the codine did more harm than good causing chronic constipation. Finally, about 3 weeks ago, the hospital said the inflammation has now gone down (his crp levels were above 95 at one point) and the inflammation has turned to scarring so surgery was the next step. He was scheduled in for the end of November to have 7 inches of his small intestine removed (Ileum) and re-attached to the colon.

Unfortunately the pain returned with a vengeance on Monday and another ambulance was called (4th time lucky!). A quick x ray showed he was severely blocked up, and the passage was so narrow there was no way for any release (to put it nicely). He has been filled with laxatives and given a few enema’s, though not very successful, and the surgery has now been brought forward to Tuesday.

I was wondering if anyone else has had any similar experiences and how you were after the surgery. He has been told he could be 2 – 5 years symptom free, although he is apprehensive about believing this. For the last 18 months there hasn’t been any light at the end of this long, dark tunnel, and I was hoping someone had a similar story with a happy ending!

Also, during a flare up, what sort of medication / pain management do you find helps? Paracetamol doesn’t seem to work and the only thing he says works is a hot bath, but this isn’t much use whilst he’s at work!

Sorry for the lengthy story, and if what im saying doesn’t make much sense, but im new to this and tried to be as technical as I could!

 

[sarah986]

Hi, my husband was also diagnosed this year, in may. He started of on pentasa, azathoprine and prednislone. It took 6 years for him to be diagnosed only after he collapsed with the pain, and i had to rush him to hospital. However when they started to reduce his prednislone it cam back with a vengeance. He was then referred to the top specialist here and they started him on remecade. This has started to work but he still has some days of bad pain, when its bad painkillers dont really work. He was prescribed buscopan and this works at time but only when its slight. He has had to be admitted twice to get morphine. His strictures are wide spread so when the food passes through 1 stricture it moves down and then has to pass through another stricture. The doctors are quite reluctant to do surgery tho and say it is a last resort as his strictures are in more than one area. Also my husband is on fortsip protein drinks, each shake has 300 calories and when my husband cant eat because of pain, he drinks 5 of these a day. This helps sustain his weight. He cant afford to loose anymore.This doesnt really help you but sometimes its nice to hear other peoples stories, and know your not the only one goin through this.

 

[Crohns08]

Hey L_J, welcome to the forum! (Though it sucks under these pretenses)

Sounds like he's been to hell and back and I think a lot of us can certainly relate to that. Just some things that jump out at me right away, the main thing being that I know he's in a lot of pain but narcotics are really bad for someone who already has issues with constipation. I know a week on percocet and especially dilaudid for me will back me up and I don't even have issues with constipation. I've heard though drinking a lot of fluids can help with this as well as even just walking around a little bit.

Can you get nucynta in your area? It's a newer drug that is supposed to be as strong as percocet without the slowing of the bowel. The only bad thing is it can take up to 30-45 minutes to work. It sounds to me that they are not being aggressive enough with his treatment. I have a little narrowing and have had severe flares and I've been on biologics, you might want to bring that up and see what your options are there.

Hot baths are good, but if you could get him a heating pad for when he can't bathe, that'll help a lot. When I'm flaring I'm inseperable from mine. Hope this helps.

 

[Terriernut]

First of all, welcome!! Although I'm very sorry you need to be here and that your boyfriend is having such a horrible time!

As others have said, narcotics make constipation much worse.

May I ask a couple of questions? Have they only tried Aza? Did the CT scan show any fistulas? Did they put him on a liquid only diet? If not, why not? With the constipation and blockages as bad as they are, he is in serious jeopardy of having a perforated bowel. Having had one of those and emergency surgery...I dont recommend it!!

His CRP is down and that is wonderful, but I wonder about perforations, fistulas, etc. It sounds to me like some of the next drugs will be necessary, Humira or Remicade. And yes, hopefully the surgery will be a success this time!!!

:ghug:

 

[L_J]

Thanks so much for your reply's. Before he was diagnosed with this disease i'd never even heard of it so it's great to know that he's not alone.

When he was admitted to hospital the first time, in the midst of a very bad flare up, he was in for 5 days and placed on a polymeric diet, drinking up to 5 ensure plus a day. He continued this for a couple of months and it was great at first. The drinks then began to meake him nauseas and he can no longer tolerate them so now he's surviving off very little.

I have all my hopes resting on this surgery to be honest, even if it's just to give us a fresh start. That way at least we know what we're dealing with now.

 

[JohnathanO]

I am in almost the same boat as your BF right now. I have been in pain off and on for months but I am always bloated and sick to my stomach. When I lay down you can watch my intestines move along as if there is a tennis ball being pushed through them. The depression that goes with it is super bad and I have such a strong wife that I dont know how she handles me. I have a bowel ct scan on Monday and I am expecting them to find a partial blockage. Right now I would rather have surgery than live the way I am. I have a 4 month old and due to the stomach/abdominal pain I cant even hold him because it hurts. Be strong, he needs you now more than ever and hopefully it will get better soon!

 

[Nyx]

Hopefully the surgery will give your BF some much needed relief. I'm with Misty on this one, you don't want him to have a perforated bowel, I too had that and now have a permanent colostomy (which isn't a bad thing by the way). But the pain from the perforation was the worst thing I've ever felt in my life!!

Good luck with the surgery! I hope he feels much better after it and is granted remission..

 

[Terriernut]

LJ, so glad Nyx chimed in on this! By the way there are plenty of options on a liquid only diet besides Ensure. (thank goodness)

How is your BF doing now? Any news?

 

[stupidbody!]

Ugh! Sounds familiar unfortunately. I don't know anything about the surgery. Makes me wonder if they weren't aggressive enough with the meds too especially if they weren't helping. When I was at 50-60 mg prednisone that helped my flare quiet down. After that I needed to be on Humira to get off the prednisone and feel mostly "normal." I don't know about your healthcare system(UK?), but would it be possible to see another doctor from another hospital?