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Remicade users/Fistula-abscess surgery. Need advice.

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Posted 10/4/2012 4:02 AM (GMT 0)

Hello!

Been awhile since Ive posted, but have been lurking around lol.

Currently battling a flare up for which I spent a week in hospital on IV prednisone and currently tapering off on while I wait to start remicade (as i have narrowing in the ileum). In the meantime I developed a fistula right at the end there which the tract itself is clear (of infection) but MRI showed it connects to a lil pocket of infection which they will be doing surgery on tomorrow. I think all they are doing is making an incision through the skin on my bottom to allow it to drain properly and heal, they didnt think a seaton would be needed, but wont know for sure until tomorrow..

Any post op suggestions on keeping clean and BM after? I have been lucky enough to not require any surgery so far so am a bit nervous...The pain i have now is intense, so I am sure it will be better after but just worried on keeping clean and everything....

Looking to get some information from anyone currently on Remicade, how was it when you first started... Did you feel better right away or did it take a few weeks? Any initial or laggin side effects? All the medical people I have spoken too say there is nothing major (other than the could give you cancer/infection could kills ya) that they see. I know i am prescriped to take benedryl prior to the infusion which may cause me to be a but drousy. So any information you could provide on your experiences would be great, as I am hoping after my infection clears I`ll be slated to start in a week or so.

Thanks in advance and hope you all are having a good day!

Christine

Posted 10/4/2012 5:24 AM (GMT 0)
Hello,

I just finished my second Remicade infusion and have seen more energy and less fatigue/joint pain. However, I am still waiting for the flare to lessen. The first infusion knocked me out for the day so I would plan to do nothing on that day.
On a different note way to go on the Peru trip! I love your positive energy:)

G'luck with Remicade!
Posted 10/4/2012 9:59 PM (GMT 0)
Dear Crohnieonthengo, I hope your fistula surgery went well and that you are in less pain now. I would be so grateful if you could tell me exactly what surgery you ended up having, and what it was like, as I am SO very nervous I might need the same thing. Apologies for ans answering you with a question. I have heard amazing results from Remicade, good luck and very best wishes. Lizalou
Posted 10/4/2012 11:13 PM (GMT 0)
Christine,

I don't have an answer for you .. only sending my support and best wishes for a good recovery and great Remicade result.
Posted 10/5/2012 2:13 AM (GMT 0)
Hi All,


Well went in today, which was suppose to be consult/local anesthetic for drainage of the abscess that developed off the fistula ( feel like i need to publish a book on my medical history/problems as there is so much background needed for a sentance to make sense! lol).

 Turns out surgeon says its too deep and on a weird angle so need to rebook more time and will need to be put under.. so waiting now until next week for word on when I will be booked. I was pretty upset on hearing I will need a seton put in but in between my mini meltdown I am pretty sure he said it is a fisulectomy I will be getting. Odd thing is, Kinda saw this coming, still had the mini meltdown anyway, thats how i cope i guess!

So thank you for the well wishes, I will let you know, Lizalou, how it goes when I go in :)  As for the Remicade, hopefully will be able to start that when this is all over. (darn multiple problems that dont play well together). They have increased my prednisone to help with the pain of the narrowing, which i was waiting on the remicade for. So hopefully in a few weeks/month Ill finally be able to start remicade*FINGERS AND TOES CROSSED**

Posted 10/5/2012 11:57 AM (GMT 0)
Good luck Crohnieothego, I shall be keeping all fingers crossed it goes well and gets rid of the darn thing. Try to stay calm and collected, I know easier said than done. I hope the predisone helps with the pain in the mean time. Please post when you are able after the event. Warmest wishes and best of luck, Lizalou
Posted 10/6/2012 12:52 PM (GMT 0)
Good Morning,

Hope your surgery went well and your feeling relief, I have crohns in the ileum and rectum I also suffer from fistula's, had my first in 2007 had a fistulectomy an seton. Now 2012 I have another fistula and the Doc say lets treat it with meds. Well the meds are either Humira which it took me 3 months to finally say OK I'll try it. And my Insurance would not cover it. Now doc says remicaid, "I DO NOT WANT REMICAID" Seams these are the ONLY two drugs that may help cure fistula's. I'd rather just have the surgery!

I have a friend thats been on Remicaid I'm not sure how long, but she has gain 60lbs, the last thing I need is to gain more weight!! I have fought weight my whole life and still fighting, seams when you have crohns in the lower intestines you don't loose weight like people that have it in the upper intestines. Now also everything we read about it (side effects) cancer being #1, others say skin sores, hair falling out, breathing problems, hives, heart arrythmia, and so much more. Which has put them on more meds. If you read what people are saying on WedMD it seams once you start Remicaid they up the dose and more problems are caused. My head is spinning out of control!

I have crohns, was told years ago I had lupus but new doc says no its arthritis, back inj, raynauds, fibromyalgia.

I have been on every drug out there. Is there really a durg out there to help us or are we just a pin cushion, or a research rat?

Wishing you the best keep us posted on your recovery!

Posted 10/7/2012 1:03 AM (GMT 0)
Hi Justcantbeleave,

I didnt get in for the fistulectomy as it was too complex a problem for local anesthetic so i am scheduled for the operation on October 24th. I have been on many different meds and still developed this fisutla and require the surgery to drain the infection and prevent it from happening so i can start the remicade. I know each person experiences and reacts differents to medication and our symptoms vary for each person with their crohns as well.

Personally, With narrowing at the ilecocal valve, last part of my ileum (very small portion but very narrowed) as well as perianal issues remicade is the best option for me. It works at a cellular level and for me the benefits it can provide (fistual healing as well as reduce the narrowing) out weigh the potential side effects. I have been on steroids quite frequently and they are hard on your body and have side effects too. So i am opting for it in hopes i can prevent having a resection done. I know this may not be an option for everyone and each person needs to consider their personal lifestyle and work with their doctors to find the best treatment option. Unfortunatly for us, the dont know what causes crohns,the can only try to control the sympton, we are very much test subjects. I really hope you can find something that works for you, whether it be surgery or medication or a combination of both :) all the best and try to just concentrate on getting better, i know it can be so overwhelming at times..

Christine
Posted 10/11/2012 4:01 PM (GMT 0)
crohnieonthego,
I'm not sure about the rest of what your experiencing but the Remicade made a difference to me, no instant but within twenty four hours. You see I work at night, get the infusion starting about 9AM out by noon. (be prepared for the fog) GO home crash til 8 get up and get ready for the grind. Pain is less, joints feel a bit better a bit more energy. I feel better after another nights sleep. It lasts about six weeks and by the seventh week I can tell in the eighth week I'm hurting again, but that's me. the GI says to take the pain killers I don't, still have most of that stuff from a year ago. I work around high speed machinery you have to have a clear mind. One note thought I need to watch my B vitamins levels, my memory is affected. I have taken something like 5 Hour Energy B12 and B6 until I see the GI which is tomorrow morning to see what he things I should take.

Good Luck
Posted 10/12/2012 10:54 PM (GMT 0)
I am so pleased that you respond well to Remicade. Unfortunately my antibodies don't work with it, so I take Humira ( not nearly as good as far as I can tell ) and Methotrexate. I also have the narrowing at the anastamosis in the ileum and firula, which fingers crossed may have closed on its own, although I am not sure. Good luck for the 24th, I shall be thinking of you and please post about how you are feeling when you are able to. ALL THE VERY BEST, Lizalou
Posted 10/14/2012 1:49 AM (GMT 0)
Hi Question everything - Glad to hear the remicade works for you :) What do you mean your memory is affected? Did you get a chance to talk to the GI? Like when I take a pain pill for example I feel kinda out of it, or on the prednisone, I get that cotton head feeling.. Is is like that, a reaction to the medication and you figure the b12 helps or more a fatigued memory thing and thats why the B12 seems to help? Sorry for the questions, just love to hear from people actually experiencing the effects as well as the medical input from the doctors. I work with numbers daily so my mind is something I like keeping sharp!

Lizlou, Its really too bad the remicade didn't work for you. I was on Methotrexate a few years ago and actually ended up in remission for well over a year with no meds afterwards. I hope you can find sucess with it :) Also, thank you so much for your support, I will for sure keep you updated, and I would like to keep hearing how youre doing!
Posted 10/28/2012 2:24 AM (GMT 0)
Hello!

Just an update, went for surgery on the 24th! Everything seemed to go well, wont really know until I am all healed, they put a drain in and got rid of the abscess and opened up the fistula. Also was able to work on a fissure I had in hopes it will heal up.

Just wanted to thank you all for your support, and for listening! Despite the pain, which I consider a good pain, if there is such a thing. I feel much better, my body is loving not having the infection in there anymore! I am scheduled to start my remicade on Nov 8th. Its been a long few months but seems like things are starting to take a turn for the better.

Posted 10/28/2012 3:01 PM (GMT 0)
OH BOY,....I also hope everything goes well for you,"crohnieonthego?" When I had my first intestinal issues, the GI,s put me on everything that was listed in the in the prescription dictionary, PDR,(Physician Desk Referral) I would not let the Rn.s put anything into my line without me first reading all of the side effects!! What a Big mistake that was for the nurses who had to deal with me,and for me, who was trying to wrap my head around all of the side effects. I had to step away from the books, and hope to hell the Dr.s knew what was best for me?

"REMICADE" is a serious drug, and I think what happens with the side effects all depends on each of us as individuals. We all have chemical in-balances, so how it did not bod well with me, it has helped Millions of others. So you have to have trust in knowing that you need it to help you get better, and let the medication take its course. Will you have side effects that might put you in a Mentally challenged state? Maybe?>>>But, Maybe Not? Just hang in there and try to stay Focused and have a Positive Attitude! Keep posting, and with all the support in this forum, I am sure we will be able to help you with any, and all of your concerns . Happy thoughts, and Good Luck to you, and yours...xoxoxox
Posted 4/19/2013 11:47 AM (GMT 0)
Can I ask if it would be recommended to start Remicade the day after having surgery on a fistula?
Posted 4/20/2013 5:12 AM (GMT 0)
Hi neatgadgets,

I am not sure if it would be recommended the day after, but I guess each situation is different. In my case I had surgery Oct 24th I think and started remicade around Nov 10. My surgeon gave my GI doc the go ahead to let her know all the infection was cleared so they could start. The lag in time was from healing and communication between the surgeon and GI.

Hope this helps :)
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