Crohn's Disease Forum » Your Story » Partner of a Crohns patient


08-25-2015, 03:55 PM   #1
skbp
 
Join Date: Aug 2015
Location: hilo, Hawaii
Partner of a Crohns patient

Hello! Nice to "meet" everyone. I have a gf that is 22 years old and got diagnosed with Crohns at 11. She is currently having a flare up and the dr.s are flooding her with antibiotics. I joined this forum for support because I don't know first hand what she is going through and I'd like to be able to be strong for her and encourage her to do things that will help the situation. She has perianal fistulas? and tracks that are leaking puss and blood on her rear. She has severe cramping and sharp pains on a daily basis. She has no appetite. Every time she uses the bathroom she comes out crying because she is vomiting and shitting out what seems to be stomach acid. I can't help but cry feeling so helpless. She has been on morphine, zophran (nausea) and the antibiotics going on 4 days and they all seem to be weakening in effectiveness. Does anyone have any pointers or tips to keep her comfortable while we play the waiting game and hope to hear any news from the dr.s?
08-25-2015, 05:27 PM   #2
Madhu
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Sorry to hear this. My husband went through the exact symptoms when he was flaring. Had 2 perianal fistulas too. His GI put him on Cipro for fistula drainage and Tramadol for the abdomen pain. 2 pills of Tramadol and his pain reduced quite a lot. But the magic medicines are anti-TNFs. Once he was put on Remicade, it was just magic. He improved drastically in 3 days and has been improving ever since. Please talk to your girlfriend's GI about Remicade/Humira. Hope she feels better soon
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-25-2015, 05:45 PM   #3
skbp
 
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Location: hilo, Hawaii
Sorry to hear this. My husband went through the exact symptoms when he was flaring. Had 2 perianal fistulas too. His GI put him on Cipro for fistula drainage and Tramadol for the abdomen pain. 2 pills of Tramadol and his pain reduced quite a lot. But the magic medicines are anti-TNFs. Once he was put on Remicade, it was just magic. He improved drastically in 3 days and has been improving ever since. Please talk to your girlfriend's GI about Remicade/Humira. Hope she feels better soon
Thank you very much for responding! You gave me some very useful information and I will definitely talk to him about all those things (Cipro, Tramadol, Remicade and Humira)! Those last two sound familiar and I believe that Humira might be what the hospital dr. was recommending. I hope that your husband stays in remission and I wish your family the best!
08-26-2015, 08:50 AM   #4
Madhu
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Thank you. Cipro is a mild antibiotic that helps in fistula drainage. There is also one more called Flagyl which personally felt my husband feel like crap. But there are people for whom it helped. Usually doctors prescribe a combo of Cipro + Flagyl. Since Flagyl didnt agree with my husband he was given Cipro. And Tramadol is just a painkiller kind. It does not help in treating Crohn's but it definitely helped us get through the days until his Remicade infusion started. The GI did not want to give him any pain killers at first because it wouldnt help with the Crohn's but he was just in too much pain and we begged him for some relief. You may want to look at the forums for Remicade and Humira and you can get more perspective on them. Good luck
08-26-2015, 09:11 AM   #5
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The waiting game sucks!! I'm currently being treated after a severe flair, prednisone, bentyl, occasional narcotic..... My diet is stay well hydrated, low residual foods, small amounts... Heating pad, .... When it was just 30+ times a day with very painful BM.. And severe pain within minutes of eating all I could do was writh in pain... And lost nearly 20 pounds..... My wife who is very understanding and sympathetic .... Really offered me nothing, I couldn't feel anything beyond my own pain and misery despite her best efforts.
I just had to wait, have series of blood test, CT scans, etc.... All to rule out something else.. Now I'm waiting for a month to start Remicade/Imuron.... This disease sucks.... But it does ebb with time and treatments.... My new best friend is my GI doctor... Not really a friend... But getting past general doctors.... Was the best move I've made.
I really wish her luck.... Just stay supportive, and understanding, and there for her, even when it seems like your doing nothing
08-26-2015, 11:08 AM   #6
Madhu
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The waiting game sucks!! I'm currently being treated after a severe flair, prednisone, bentyl, occasional narcotic..... My diet is stay well hydrated, low residual foods, small amounts... Heating pad, .... When it was just 30+ times a day with very painful BM.. And severe pain within minutes of eating all I could do was writh in pain... And lost nearly 20 pounds..... My wife who is very understanding and sympathetic .... Really offered me nothing, I couldn't feel anything beyond my own pain and misery despite her best efforts.
I just had to wait, have series of blood test, CT scans, etc.... All to rule out something else.. Now I'm waiting for a month to start Remicade/Imuron.... This disease sucks.... But it does ebb with time and treatments.... My new best friend is my GI doctor... Not really a friend... But getting past general doctors.... Was the best move I've made.
I really wish her luck.... Just stay supportive, and understanding, and there for her, even when it seems like your doing nothing
Sorry to hear this. The waiting is the hard part. Same thing happened with my husband. Painful BM, writhing in pain, lost 20 pounds. Everything to the word. We were also made to wait for 1 month to start Remicade because he had latent TB and he had to be given a month medication for that first. I was totally helpless when he was in pain. Though he appreciated my support fully, he also yelled at times when he was suffering. I bit my tongue and went with all that. That's the only thing I could do. But hey it definitely gets better. Be very hopeful that you will improve for sure. Remicade is really magic. Trust me. Keep your faith up and good luck
08-26-2015, 03:32 PM   #7
skbp
 
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Location: hilo, Hawaii
Thank you. Cipro is a mild antibiotic that helps in fistula drainage. There is also one more called Flagyl which personally felt my husband feel like crap. But there are people for whom it helped. Usually doctors prescribe a combo of Cipro + Flagyl. Since Flagyl didnt agree with my husband he was given Cipro. And Tramadol is just a painkiller kind. It does not help in treating Crohn's but it definitely helped us get through the days until his Remicade infusion started. The GI did not want to give him any pain killers at first because it wouldnt help with the Crohn's but he was just in too much pain and we begged him for some relief. You may want to look at the forums for Remicade and Humira and you can get more perspective on them. Good luck
I believe that the Cipro/Flagyl combination is what she is currently taking though IV. The doctors are giving morphine for the pain, but she seems to be getting immune because now she vomits and bm about every 2 hours. Does its seem to get worse before it gets better??

On the bright side we just heard that the medical has given the okay to start her on humira, but they will not administer until the fistulas have drained out the puss and blood and we also found out that she will be taking a steroid enema which she is not looking forward to because her rectum is the most raw/sore area of her body.

Seeing her cry with every bm I am so glad that your husbands dr finally gave him something for the pain! To see someone you love go through such a horrible disease and not be able to help heal them is very difficult. I don't know you but you seem very involved and I am sure that your husband appreciates you being on his team and advocating for him! Thank you for all the useful information! It comforts me to know that even though treatment doesn't seem to be working that other people have had all these same things done!
08-26-2015, 03:40 PM   #8
skbp
 
Join Date: Aug 2015
Location: hilo, Hawaii
The waiting game sucks!! I'm currently being treated after a severe flair, prednisone, bentyl, occasional narcotic..... My diet is stay well hydrated, low residual foods, small amounts... Heating pad, .... When it was just 30+ times a day with very painful BM.. And severe pain within minutes of eating all I could do was writh in pain... And lost nearly 20 pounds..... My wife who is very understanding and sympathetic .... Really offered me nothing, I couldn't feel anything beyond my own pain and misery despite her best efforts.
I just had to wait, have series of blood test, CT scans, etc.... All to rule out something else.. Now I'm waiting for a month to start Remicade/Imuron.... This disease sucks.... But it does ebb with time and treatments.... My new best friend is my GI doctor... Not really a friend... But getting past general doctors.... Was the best move I've made.
I really wish her luck.... Just stay supportive, and understanding, and there for her, even when it seems like your doing nothing
Thank you for responding and for your advice! She is on a bland diet to try and "let her stomach rest" right now. We live in Hawaii and so medical attention specific to Crohns is hard to come by. So we understand the waiting game well. I hope that everything goes well with your Remicade/Imuron treatment and that you go into remission for a long time! This disease does take a toll on you as a "supporter" and its especially hard because we will never understand the extent of the pain you guys go through and that there is nothing to do to make you feel better. Is prednisone and bentyl anti-inflammatory drugs or steroids or antibiotics?
08-26-2015, 03:49 PM   #9
fuzzy butterfly
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I believe that the Cipro/Flagyl combination is what she is currently taking though IV. The doctors are giving morphine for the pain, but she seems to be getting immune because now she vomits and bm about every 2 hours. Does its seem to get worse before it gets better??

On the bright side we just heard that the medical has given the okay to start her on humira, but they will not administer until the fistulas have drained out the puss and blood and we also found out that she will be taking a steroid enema which she is not looking forward to because her rectum is the most raw/sore area of her body.

Seeing her cry with every bm I am so glad that your husbands dr finally gave him something for the pain! To see someone you love go through such a horrible disease and not be able to help heal them is very difficult. I don't know you but you seem very involved and I am sure that your husband appreciates you being on his team and advocating for him! Thank you for all the useful information! It comforts me to know that even though treatment doesn't seem to be working that other people have had all these same things done!
Hi this should hopefully be the worse time,and when she starts humira things will get better for her, just being there is the best thing you can do,I know I appreciated people just being there for me when I was in that place. I pray all goes well and she feels better very soon, hugs to you both..
08-26-2015, 06:06 PM   #10
Madhu
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On the bright side we just heard that the medical has given the okay to start her on humira, but they will not administer until the fistulas have drained out the puss and blood and we also found out that she will be taking a steroid enema which she is not looking forward to because her rectum is the most raw/sore area of her body.
Yes they will not administer Humira until all other infection in the body is controlled. My husband had 2 surgeries to place setons in the fistulas to help drainage. Until the surgery, he had zero drainage. But after that he drained for more than a month. 2 weeks after his first Remicade infusion, we met with his GI and he was so happy with the fistulas because they were already healing. The tough part is waiting to start Remicade/Humira. Once it is started, we get our loved ones back. So just hold on, it gets better
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