Boyfriend with Crohns

[alcameron]

My boyfriend of the last 5 years was diagnosed with Crohn's when he was 22, he is now 36.He has a one resection, and has had a couple surgeries for his fistulas. The resection was done way before we met. When we were first together his crohns was in remission. He still had pain from cramping and had to be hospitalized only 3 times since we have been together. Recently (about the last 2 1/2 years) his main problem has become the fistulas. It started with one. He had the surgery to have it lanced and packed. In his recovery, it seemed like the surgery didn't help much because the fistula was still there and bothering him a lot. Now 2 years later he has about 6 of them. His pain has increased exponentially. His doctors have suggested against surgery again (for what reason, i have no clue). He has been on a steady course of cipro and flagyl for many months now but it doesn't really seem to help him. It has gotten to the point now that he doesn't even hardly get out of bed. He has lost more weight (he is 6'0 and about 130lbs) and its hard to watch him try to move because of the obvious pain he is in. His doctor suggested humira, but there were a number of tests that needed to be done before he could get on it. Then he was referred to an immunologist because he has had Valley Fever in the past. His GI doc told him he had to see this immunologist before they could start the Humira. Apparently there is a shortage of immunologists in the Tucson area, it took him about 3 months to be seen. After finally getting in, the immunologist told him that there was no need for his GI doc to send him there, and that he can just take diflucan if the valley fever pops up again. So now after all this, hopefully he can get on the Humira.
I just wanted to share my story of frustration.

 

[InkyStinky]

Hi there, so sorry to hear about your bf. What a hard time for both of you. Do you know why the gi wants to start humira and not remicade? I haven't been on either, but my brother (also crohn's) was on remicade and it healed his fistula. Not that the same tx works for everyone or anything, but I've heard lots of fistula sucess stories with the remi.

I'll be back to post a couple links for you in just a min...

 

[InkyStinky]

There was another recent new member who's bf has crohn's - maybe it would help to connect with her so you have someone who understands what you're going through: http://www.crohnsforum.com/showthread.php?t=22922

There's a new subforum on here under the support forum for partners, family, and friends: http://www.crohnsforum.com/forumdisplay.php?f=90

Glad you found this forum! It has the best info I've found anywhere, and the best people, too!

 

[alcameron]

I'm not sure why the GI doc thinks humira and not remicade. I just know that he has been talking about humira for almost a year now, and we are just barely starting to see some action taking place about actually getting on it. My boyfriend prefers that I not come in the doctors office with him (although I have to drive him there, I just sit in the waiting room) so sometimes I feel like I'm not getting the whole story. I'm not his wife, so I don't just wanna go in there and start asking a bunch of questions to the doctor. I don't wanna feel like I'm stepping on his toes. :/

 

[xJillx]

Hi and welcome! I am so happy you joined us to share your story. It seems like you certainly had to reach out to others who would understand. And, we sure do understand.

While reading your story, I kept thinking your BF needs Remicade! And, of course, my Sabrina had the same thought. Remicade can do miracles for fistulas. I have read people saying their fistulas cleared up within days of starting the treatment.

I know you are not your man's wife, but after 5 years, I certainly think you are in your right to ask questions and make suggestions. It couldn't hurt to ask if Remicade was a treatment option him and his GI discussed and to encourage him to do some research on it.

Good luck!

 

[Crohn's 35]

Hi Alcamron, welcome to the forum :bigwave:. I agree with Inky and Jill. I have been on both and even though I was allergic to Remicade, I still think it is best for fistula's. Humira is very mild and may not combat the problem. We are not doctors but we have been there. I dont have fistulas but I do know they are very painful. As for not being in the docs office, it could be very embarrassing for your bf, most men/boys don't like talking about their personal body parts or it'f functions in front of females, they have a hard enough time with talking to the doctor. Just be there and support him, it really means alot. Keep us updated on how he is doing. You can learn alot here and everyone is helpful. Good luck.

 

[CJ1]

Hi all, My name is CJ from Australia and new to your forum.
I was diagnosed with Crohn's when I was 15 had a resection at 21 and have had up's and downs. Now at 40 and doing very well I just wanted to say I also had great support from my then girlfriend who is now my wife of 16 years.

Support is very important and your BF is lucky to have you.
I fund for me B12 plus a supplement called Revenol.
I now take only Salofalk Granules for my Crohn's

All the best,CJ

 

[InkyStinky]

I don't wanna feel like I'm stepping on his toes. :/

Especially if he gets irrationally cranky with those closest to him when he's sick, like I do!!!! :blush: :blush: :blush: But like Jill said, maybe you could ask your bf if his doc mentioned remicade... might just mention you read about it being good for fistulas and were just wondering.

 

[alcameron]

So I asked my boyfriend if he had ever been on remicade, he said they had him on it before his big surgery and he didn't feel it did anything for him. Don't really know if that would be different for the fistula problem he has now. But either way he is gonna start on the Humira first and see how that goes. I will keep you posted

 

[David]

Welcome!

I'm staring at one of the more common treatment algorithms for fistulizing Crohn's Disease. There are three subcategories: simple fistula without rectal inflammation, simple fistula with rectal inflammation, and complex fistulae. Humira isn't mentioned as a treatment option for any of those. Antibiotics, Imuran, Remicade, and surgery are, depending on the subtype.

That doesn't mean Humira won't help and I pray it does, but I do agree with the posters above.

All my best to you and your boyfriend.

 

[alcameron]

So update. My boyfriend has NOT been able to get on Humira. One of the fistulas has become an open would. He went to a surgeon and now he is getting semi-permanent drains put in next week. He is worried about the surgery, I am too. Stressful time right now. He is just in so much pain and I wish there was something more I could do.

 

[David]

Bummer I'm so sorry

I think it's natural to be worried about the surgery but I'm sure it's going to help. The best thing you can do is be there for him. I know it's hard, but you're doing great. He's lucky to have such an amazing person in his life

 

[xJillx]

I am sorry your boyfriend is having such a tough time with his fistulas. I sure hope all goes well with the surgery and he starts to feel better soon.

 

[hack]

hey i just joined, and after reading this i felt like saying something because it is very similar to my story. Alcameron i hope maybe my story and things i went through might help. Iam 23 i was diagnosed when i was 18. In the first two years my symptoms were mild. then while away at college my symptoms got progressivly worse. After returning i saw my GI and while away i formed multiple fistulas. So i was sent to a surgeon who performed placements of setons( alcameron idk if this is what ur bf is recieving but if it is it really helped me because it allowed the fistuals to drain and all the swelling to subside) so after the setons were placed i started on cimzia and have been on it ever since. setons were removed after 4 months and have been just on cimzia. but i have flare ups with my fistulas every so often and they get to be so swollen and painful i can not walk and dont want to move. i have had my surgeon drain flaring fistulas multiple times and continually have had multiple new fistulas form. currently i am struggling with my fistulas and they are draining and not massively swollen but just are swollen enough to be constantly bothersome. I am kinda hitting my end point with these and wanting to do something to make it better cause i just cant believe this is as good as they can be managed. I saw posts on here that remicade works great with fistulas and iam setting an appointment with my GI and i will bring maybe switching to remicade up with him. But i think my frustration mostly has come because one of the new fistulas that has formed i feel has affected my sex life and being the age iam this has affected me greatly and need to get answers and fix this.
alcameron hope this maybe helps. i definatly know what ur bf is going through i have bgone throught very similar problems. I definatly had those times when it was so painfull i didnt want to move. And i have also gone through the weight loss as well when diagnosed i was 190 and got as low as 145 pounds. so this alone has been a struggle for me to deal with but i recently have been working on gaining weight and am up to 160 pounds so iam proud of my self for that. i also noticed u said tucson i also live in tucson so if you would like know my doctors that i have seen just let me know.

 

[alcameron]

Thanks for your post I sure do hope the setons help as well. It sure does sound like you have the same issues going on as well. I hope that remicade works for you, let me know how it goes. What doctors do you have here in Tucson? Any you would particularly recommend?

 

[hack]

Thanks.. I definatly recommend my surgeon Dr. Terrance Atkins. He has been great and honestly the best doctor i have ever had. My GI is Dr. Leon Tsai he is good and has done every procedure to help me over the years just can be in personal at times which can frustrating.. especially when u want answers.

 

[alcameron]

Tim is getting his surgery today. I'm not sure how long he'll be in the hospital but I am worried about him. Oh and hack, I'm pretty sure Terrance Atkins is his surgeon.

 

[hack]

i hope everything goes well and if atkins is his surgeon then he is in good hands..

 

[hack]

hey alcameron i was wondering how the surgery went and how your boyfriend is doing latley?

 

[alcameron]

Oh Hi!

I almost forgot about this forum. Thank you for asking about him! Well what ended up happening was: The surgeon saw it was a lot worse than he thought, he decided he didn't need the drains and just excised a lot of dead/dying tissue around the fistulas, pretty much just dug them out. He was in the hospital for 6 days, but immediately after surgery he said he already felt SO much better, he could actually sit on hit butt.

He started the Humira the very next day after he got out of the hospital. He had dressing changes with showers 3 times a day. He kept it up very very well. He got off the flagyl and cipro. The flagyl gave him such a horrible taste in his mouth before, and now he's not on it his appetite has increased a ton. Which is very good because he weight before the surgery was about 129, and he's 6 feet tall.

So now the surgery was about a week before Halloween, and its been going good. The surgeon said it is healing a lot quicker than he anticipated (he initially said the wound could take up to a year to heal), and he's said 2 showers/dressing changes will be good. Tim has appetite has gone through the roof, I can hardly keep him full! He is up to about 141 lbs now. He is walking upstraight and everyone can tell the difference in how he feels.

So I hope things will continue this way. He is getting so much better all the time. Starting to look like his old self again. Thanks again for your interest in him, I really appreciate it!

 

[KWalker]

Welcome! Glad to hear things are going well for him. I had surgery for an abscess on Nov.11/01 where I stayed in the hospital for 5 days and then had it packed daily after that. The nurses then came, did a terrible job and ended up making my wound worse so the infection came back and spread so I had to have a second surgery, which was bigger and also led to 5 days in the hospital. It's awesome that your boyfriends is healing and he must be very lucky to have someone like you there for him through everything.

 

[bjeffrey]

So far, I have been fistula free for a few years on Humira.

I could not handle the Remicade side effects after 6 weeks.

Best wishes.

 

[Angrybird]

Hi there, really pleased that things are improving. Will keep fingers crossed that they continue to do so.