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My boyfriend has crohn’s. He has been living with this illness since he was a teen, (he is now is his 30's). He had 2 surgeries but his case appears to be very severe. He ended up in the hospital with a partial blockage a few month ago, he did not have surgery but ever since he was released from the hospital this awful illness has taken a toll for the worse. He is not able to eat anything solid for over 3 months now and he is in constant horrible pain and very depressed. There is scar tissue on his intestine and the inflammation from  crohn’s.  He is also talking about suicide, which naturally worries me to no end.  He takes several types of meds, including immuran and pain killers but he is literally fading away. He is loosing weight and in constant pain. He recently went to a highly recommended gastro. doctor who essentially told him that there are few options and he should just do what he is doing. But doing what he is doing which is being in daily pain and not eating is killing him. Has anyone had any experience with such a severe case of crohn’s? Is there anything that can be done? He feels like his life is over and he is not going to get any better.

 Reply posted for greysky.

I am on Remicade for two years now as of July 6th, 2009.  My physician at Barnes Jewish hospital wanted me to commit to it for two years to see if I had improved.  I can hardly take anything that helps with Crohn's, but this definitely did help.  It is a bit pricey, but he has to be willing to try anything.  I know that sometimes you just feel so ill that you get desperate and you don't know what to do.  At the hospital where I go to get my Remicade, they give me my own hospital room, with TV and bathroom (a must!)   I take some reading material and try to sleep during the infusion.  I was scared at first too, but I've found it's not that bad.   

 Reply posted for greysky.

I hear your concerns on the Remicade. If his quality of life sucks that much, remicade might just be worth the risk. A suggestion on Peptamen. Please let me know if you manage to have your insurance company pay for it. If you end up having to pay for it, I suggest taking a look at Ebay where you can find the regular peptamen for 100 dollars a case and the jr version for kids at about 50 dollars a case. I compared the nutritional values of jr and regular, and they are almost the same, consult your doc on that though.

 Reply posted for greysky.


Thank you for the suggestions. He might try Peptamen, it's kind of expensive at $230 per case and that will last for about 5 days but maybe it can be covered by health insurance. I looked at worms, it's an interesting concept but it too is very pricy. The treatment starts at $3,000 and I can end up costing more depending on what and how much a person needs.  As far as diet, I believe it is pretty much liquid, and even that can cause some partial blockage. Remicade, I am scared of it. The doctor told him that there is a chance of a person taking Remicade and Immuran (which he does) developing a very aggressive form of lymphoma. So that makes me nervous. Plus there are side effects I understand.

 Reply posted for z100com.

One more thing, if he hasnt tried remicade yet he should. Its a great drug that unfortunately wears off over time. But a great drug nevertheless. Why do you think its unpleasant?

 Reply posted for greysky.

How much of his intenstines were removed. He might want to try whipworms or hookworms. Also is he exclusively on a liquid diet or does he also eat a little regular food? I ask because usually if you do a liquid diet like ensure or peptamen for about 8 weeks a patient can enter into a state of remission for a short period. But it has to be exclusive. I have found that peptamen works slightly better than Ensure because its elemental and more broken down. I hope I provided you with some good ideas.

 Reply posted for asohn.


Thank you for everyone's responses. I am trying to push for a different doctor. There is a big hospital in our city that has a crohns center. Its where he went to one doc. who was not terribly helpful. But to the doctors credit I would guess that until you become their patient there is not a whole lot they can do. I am hoping he will go back there. Tried acupuncture for a while too, I think it helped him in some ways but that was before things got really difficult. I think he tried just about every medication out there besides Remicade, (which sounds very unpleasant).  I really hope I can motivate him to seek better help, its a challenge when someone is that depressed and feeling hopeless... He is not very interested in seeking counseling, something that I think is a great idea but you cant force a person to get help... Thanks again for your kind words and advice!

 Reply posted for greysky.

keep being there for him tell him ending his life is not the answer all of us are having a hard time to find a new doc thats going to listen please tell him not to let this take his life but for him to take his life back you keep being his rock and pray put it in gods hand ill keep praying for him but ending his life is not the answer hes stronger then he thinks

 Reply posted for greysky.

If his case is that difficult, then he deserves an evaluation at a large university facility or tertiary care center (like Mayo Clinic).  Ask him not to give up until he has exhaused all options.  Another thing to consider is acupuncture - it can be very helpful in chronic pain.  How could he not be depressed while in chronic pain?  Counseling is also useful when someone is feeling that depleted.  Please ask him to consider these things.  I'm sure he has a lot to offer the world.

 Reply posted for UncleBuzz.

1.  be there for him.  you simply do not realize the strength we gain from someone simply being there, holding us, crying with us - it means more then words will ever be able to express.

2.  find a new doctor.  i lived a year and a half in pain with a *** of a doctor who refused to help me.  i thank my stars my gi doctor came into my life and listened to me, did what i asked and worked with me to put me into remission.  please, do not give up hope.  we are all here for you both and will send many prayers your way.

 Reply posted for greysky.

It sounds like it is time to try something different.  With so many medications out there, sometimes it takes time to find the right one.

A different Dr might be the answer.

Thanks for caring about someone with Crohn's.

 Reply posted for greysky.

Would your boyfriend be willing to see a different dr.  I feel any doctor that essentially gives up and tells a patient to deal with it-isn't really exploring all options.  Maybe you can research some options and contact some drs.  Coming from this side of the illness I understand how he feels-and even though we appreciate all our loved ones care and support- we also can feel so low and even guilty for dragging people through this with us.  Keep loving him, being there for him- but my best thought is seeing another Dr!  Please let us know how it goes.