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Crohn's Disease
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Posted 6/1/2015 7:17 PM (GMT 0)

DH has recently visited a GI doc at IU Med Center, referred there by local gastro. DH has fistulizing Crohn's...as bad as it gets we have been told. IU doctor said Pentasa is a waste of money in treating Crohn's disease, totally worthless. DH has taken it for years. Same doc says Humira loses 20% of effectiveness against Crohn's each year. DH has taken it for 8 years. Two weeks ago he took the first doses of Cimzia...has felt unwell along with increased fatigue, (didn't think that was possible), ever since. Suppose to take second doses this week, but he won't be taking it due to the development of an abscess above his abdominal fistulas. What else can this awful disease throw at us? He weighs a whole 120 pounds, if he looses any additional intestinal tract, he will probably need TPN. Tried TPN in March, what a disaster. Have now been told that if he goes on it again he will have to go into acute care facility for monitoring because of fluid build-up. We just can't get any relief.

Posted 6/1/2015 8:50 PM (GMT 0)
I'm so sorry! It sounds really rough for both of you!
Posted 6/1/2015 9:47 PM (GMT 0)
UGH, that's terrible!!!!! He needs to be on a biologic for that fistula, Humira cleared the inflammation of my recto-vaginal fistula as well as inflammation in my colon and rectum (just dealing with horrible IBS-C issues now)...hope you BOTH find relief soon!
Posted 6/2/2015 1:16 AM (GMT 0)
Just feel terrible for you both for what you're going through. You'll certainly need to find the right anti-TNF that will work to close the fistulas and keep the disease under control once and for all.

At this point I would even be looking into some more futuristic treatments. QUbiologics would be a good start, as they look very promising.

Hope things get better soon, very soon.
Posted 6/2/2015 12:38 PM (GMT 0)

73monte said...
At this point I would even be looking into some more futuristic treatments. QUbiologics would be a good start, as they look very promising.

I can only agree with this. There is a new biologic out called Entyvio with supposedly fewer side-effects. Ask your doc the success rate it has had in closing up fistulas. And do ask about treatments beyond the anti-TNFs and Entyvio.

I hope you can get a break soon.
Posted 6/2/2015 5:30 PM (GMT 0)
I am so sorry! It's so disheartening when you do everything you can and it's still not enough. I hope they can come up with something that will help and he can tolerate.
Posted 6/4/2015 2:19 AM (GMT 0)
Is this your first time seeing this doctor? I also see someone at IU but getting ready to change. Who are you seeing?
Posted 6/4/2015 10:01 PM (GMT 0)
I just saw my GI the other day and he said that Entyvio is not so great for CD. He said because it blocks production of some type of white blood cells that cause bowel surface inflammation, it's great for UC. Because CD goes all the way thru the bowel wall, it doesn't work as well. Still, he said he does have about 15 patients on it as a last resort. He didn't sound positive about their progress tho. He also said that it can take a long time to work with CD.

I'm so sorry you are dealing with this. I had severe fistilizing perianal crohns. The fistulas haven't returned after my surgery to remove my rectum/anus and maintenance on Cimzia until it stopped working and now I'm ok on Simponi. I def agree that a biologic is needed for the fistulas.
Posted 6/6/2015 5:40 PM (GMT 0)
Thank you all for your thoughts. It's just tough...I know it could be worse, but truthfully after you have told yourselves that for 40+ years, it gets kind of old. So, sometimes you just have to vent! Not easy watching so many who seem to be "breezing" through life...I know that no one gets out of this world without difficulties, but for those of us, who have or live with someone who has, severe chronic health issues it is often a real struggle.
Posted 6/6/2015 6:36 PM (GMT 0)
You/re right, it is tough but thinking others are breezing through life may not necessarily be the case either though...I honestly don't know anyone that doesn't suffer with something, it's actually their perspective of how they view life or deal with it that may come across to us as them breezing through it when in fact they may actually be suffering in terrible ways we don't see because they don't let us see it.
Posted 6/6/2015 10:55 PM (GMT 0)
Too true.
I have my signature tattood on my wrist to always remind me to have empathy for others, even if they are jerks.
Posted 6/7/2015 11:51 AM (GMT 0)

rose481 said...
Thank you all for your thoughts. It's just tough...I know it could be worse, but truthfully after you have told yourselves that for 40+ years, it gets kind of old. So, sometimes you just have to vent! Not easy watching so many who seem to be "breezing" through life...I know that no one gets out of this world without difficulties, but for those of us, who have or live with someone who has, severe chronic health issues it is often a real struggle.

Please, vent away.

Life has dealt your husband, and thus you, an extremely raw deal with this disease. I consider I had it bad (and god knows what's to come still), but objectively your husband has had it worse with his Crohn's than me. It's robbed him of his health and vitality. You have every right to feel pissed off about it without thinking "oh but other people have it worse". Of course other people have it worse. There's 7 billion people in the world, you'd be hard pushed to find out who was at most rock bottom out of all 7 billion.

And occasionally it is important to take stock and think about other people. But to always having to be thinking of other people gets so bloody boring and it doesn't even work anyway (i.e. my suffering isn't lessened). So have that self-pity party. Whether you want to have it in private or on HW is entirely up to you. If you have it on HW, I will join you in a glass of whine :p
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