New mom with crohns

[Pain-B-Gone]

new mom with crohns

hello everyone,
I just wanted to introduce myself and also hope to get some questions answered about how people deal with pain, etc...

:ysmile:The good news: I am a first-time mom of a 6 month old girl! (pregnancy went well and so did delivery)

ale:The not-so good news: I have had crohns now for about 13 years and up until 2 years ago have been dealing with moderate pains. I have had multiple GI doctors, but have yet to find someone who really understands what its like living with crohns. I have been down the steroid road, used immune suppressants and have also tried the naturopathic route, all slightly dealing with the issue of pain.
Two years ago I had an abcess which originally doctors thought was a hemmoroid, then a fissure, and turns out it was a good old fistula in the most embarassing spot of course - the tush). Apparently it is pretty long and Ive consulted with doctors who say they cant do surgery to close it without losing sphincter muscle. I have lived with this fistula and the pain that comes along with it for just over 2 years now and would like some advice from anyone who has been in my shoes, or knows someone who has had an anal fistula before. I have done the sitz baths, changed dressing often...but the pain is emense at times. I was told a seton would help the drainage, but it wouldnt actually close the fistula by my doctor. I also wonder if the seton would help with the pain....

I was on Remicade for a year and it did nothing where the fistula was concerned...then I went off it for a year when I was pregnant, and now am considering going back or switching to humira.

My questions are:
1. Has anyone had a fistula close with success? If so how (what drugs, surgeries...??
2. Do setons help with the pain?
3. For those who have had fistulas before, do you find remicade of humira work better? - I know wveryone is different, but I am a big statistics person!lol
4. What do you take for the pain? my GI dr doesnt perscribe pain meds for some reason.

I hate taking meds, but I will do just about anything. I want to be there to raise my daughter and not feel too sick or in pain to do so. I have been on Tylenol 2s for pain recently, but its not really helping. I would really appreciate it if anyone can offer some advice or share their story...

 

[muppet]

My GI doesn't prescribe pain meds either. If you get the Crohn's under control, you shouldn't need pain management and in my opinion (others will disagree), narcotics and other pain management drugs will have a deleterious effect on your Crohn's and life in general. You're really better off without them if you can manage it. I'd rather have pain.

Anyway, to your other questions: yes, people have had fistulae close. Not me, but some. Remicade seems to be the front runner in terms of a success/invasiveness ratio. I have no experience with setons personally but lots of people here do. I stupidly let a General Surgeon cut me up before I spoke to a Colorectal Surgery specialist, but I was in an emergency situation and panicking. Now my fistula is inoperable and I'm not a candidate for seton. See a specialist surgeon!!!!

 

[xJillx]

Hi and welcome to the forum! I don't have any experience with fistulas, so I can't offer any advice. However, I highly suggest checking out the Fistula and Abscesses subform. I bet you'd get a great response to your questions there.

I sure hope that you get relief soon regardless of what treatment option you decide to go with. Good luck!

 

[Lisa]

Hi and welcome! I had fistulas, which were finally healed with Remicade - I went on that when my daughter was about 8 months old (was finally approved then!).....prior to that I wads on 6MP which helped with the Crohns', but not the fistulas.

 

[Pain-B-Gone]

Thanks for all you replies -the have been very helpful!
Pasobuff, I was wondering how long it took for your fistula to close once on remicade...also were you on imuran as well? did you have a seton put in? sorry about all the questions, I just have a lot and my GI doctor does not seem to be helping with any answers. My daughter is now 6 months and am starting remicade mid october, so I am pretty excited as the pain seems to be getting worse, not better.
I look forward to your response!

 

[Sha0913]

Hi I have had great succes with he combination of setons and remicade. I had a horrible fistula that would open and close at its own leisure. My fistula swelled to the size of a golf ball and wouldnt drain properly so i had setons placed, loved them, they didnt cause me any pain, they relieved everything, then I started remicade and that helped finish healing them, the setons were remved and I have not had one problem with fistulas since and its been 2 years. Hope this finds you better! Shannon