Hey all....my story....fistulising crohns

[rena_isis13]

hey all....my story....fistulising crohns

Hi eveyone! I'm Serena, 28 and live in regional South Australia. I'll start off by apologising in advance if this post gets a bit long...

I joined a few forums a 3 or 4 years ago, but I must admit that when I started feeling 'pretty good' I kinda didn't get back to them, my bad! And now that things aren't so I good I've gone forum searching again, but this is by far the best!

For me, it all started with an anal fissure, which formed an abcess, which then progressed to a fistula. I first had surgery for it in Jan 2005, ended up having 4 surgeries that year, the last being a lay open procedure and a cutting seton placed in Nov. This is when they tested for Crohns, which was confirmed. Throughout this time I was on and off antibiotics, but I cant remember which ones. It seemed pretty stable for a while, then it started to swell and get really painful again, so back in for surgery again. Sitting here now trying to remember what was done when is getting a little confusing Basically I had an op in July 2007, then Feb 2008, then Aug 2009 I remember this one, because it was a lot more painful and caused heaps of swelling, I ended up seeing my doc in the ER and he said that the new seton he had just placed had been done too tight so he cut it out there and then. Since then I have had no seton and it has been about the same - a bit of drainage constantly (a bit more after a bm) and no pain, just a little uncomfortable. Then a few weeks ago it started to swell and get painful again so back in for surgery on 30 july. This time he placed a loose non cutting seton. The main problem now is that all the previous stuff has happened on the left side, now there is a lump on the right side of my anus. I told the doc this before the surgery, but he hasnt really done anything about it that I can tell, I see him this coming Friday.

Back in July 2007 I was put on Mesalazine 250mg 3 times a day, and its been the same since, my doc did mention getting me off them but he hasnt yet. My sister has just started a naturopath course, so she has got me taking a super probiotic called BioKult, and after doing some research myself I also started taking Zinc and Vit C. What are other people's opinion on probiotics and vitamins? I would rather not have to take steroids and immunosuppresents, there seem to be huge side affects and in most cases I've read they have relapsed.

I havent yet been to see a GI, I know I probably should have. As I live in a small regional town, we have one General Surgeon (who I see) and one they call a disease specialist. I saw him once after I was diagnosed and I didnt like him, he basically said my problem was surgical and as I didnt have severe symptoms of crohns it wasnt necessary that I see him. Not happy! I am going to ask the doc on Friday to refer me to someone in our capital city, I know I should have done it a long time ago, so its about time I started putting my foot down! I have seen a colorectal surgeon before, but that was a long time ago.

I don't seem to have really bad symptoms of crohns, but I guess that could be because of the Mesalazine. I do remember before going on them, a few times I spent a week or so running to the loo. And I do occasionally get stomach pains. I have to be careful when I travel, eating fast food and travel don't mix! And I only drink wine now, stronger stuff doesnt agree with me.

Overall, while the last few years have had their bad times, I have lived a pretty full life. I travelled to Egypt in 2006 and been on a few holidays within Australia, and I was going to the gym which made me feel really good. But after surgery it takes me a while to want to get back into it again. The anisthetic always makes me sick, as do really strong pain killers. But I seem to handle the pain pretty well now. I was in a relationship when this started for the first few years, then a different relationship for that last few, but I am proud to say now that I am single, though it doesnt help in the baby department I would love kids, but I would also love to have the damn fistula cleared up before then, but I know that it might not clear up. I did mention babies to my doc once before, he didnt seem to think it would be a problem, we would just deal with it if it happened, I would probably need a C section though. This just made me think of something else - my girlfriends have mentioned about how hard it is to do a no.2 after pushing out a baby, and I feel like saying 'try doing a no.2 after having bum surgery' :ylol:
Oh and work isnt aproblem for me, I work for my parents who own a deli (or corner store, little takeaway shop, whatever you call it), so I can take as much time as I need.

All in all, I'm nearly always in pretty good spirits and I try not to let it get me down, other than having a combine dressing between my butt cheeks almost 24/7 I dont think I have it that bad I have read alot worse!
Thank you far taking the time to read all this, I hope its not too long winded, and didnt get too personal for you! I must admit it doesnt bother me talking frankly about this stuff, and I've had that many people look at my bum that I'm over the embarressment :ylol: Any advice would also be greatly appreciated. I hope eveyone is as well as can be! Take care!

Oh and if anyone from Adelaide happens to read this, could you recommend a good GI to me???

 

[DustyKat]

Hi Serena and :welcome:

Good to see you here, woohoo a fellow Aussie! Nothing is too much information around here so don't worry about that. I think it is a very good idea to get yourself to a good GI and get things sorted disease, fistula and medication wise. I understand the whole distance issue but once you find a GI and he gets to know you a lot of what what needs to be done can be done over the phone with you or by liaising with your GP, this what I did with my daughter so the tyranny of distance wasn't so bad. This is a great place with loads of friendly and experienced people so I hope you stick around. Oh yeah, I didn't have any No 2 issues after having kids and as you say just try it after bum surgery! :ylol:

Do you belong to Australian Crohns and Colitis? If you do ask them for a recommendation for a GI in Adelaide.

Welcome aboard!

All the best,
Dusty

 

[Astra]

Hi Serena
and welcome

Poor you! You've been thro a lot for someone so young! but you positivity shines thro!
Yes! I would recommend seeing a gastro too, they are specialists in IBD and will be able to see something the general surgeon hasn't!
Have a read thro the sections on diet and meds, get yourself genned up with some ammo for your GI.
glad you found us, lots of support and friends here!
lotsa luv
Joan xxx

 

[Crohn's 35]

HI Rena, my you have been through a few surgeries, and I hope that now you can keep it at bay. I too dont react well to painkillers or anaesethia and hate it. I use probiotics and have up'd the Calcium and Vitamin d3 and Magnesium citrate. The Vitamin D3 helps to ward off diseases and some people believe on here that being deficient on them could of caused them to get Crohns. Having children on heavy duty drugs is never a good idea but as long as you can control your symptoms with Natural supplements, that is the way to go.

Glad you are here, it is a very friendly inviornment here and everyone is here to give their opinions and experiences, seeing as we are all different, we can only give suggestions. Hope you continue to join us!

 

[Dexky]

Hi Serena, welcome!! I hate that you have been through all that but I love your attitude. Hope you stick around!! Good luck finding the right GI!! You are definitely right about one thing...this is the best crohns forum.

 

[rena_isis13]

Thanks all for the warm welcome!
Thought I might wait till after my doctors app before I replied. My usual surgeon was away this week so I saw a different surgeon, and she brought my app forward, so that was good.
Honestly I think she was a little shocked that my usual surgeon had done (what she thought was) so little to try to improve the problem. I kinda agree with her too, after reading what other similar people have had done or the meds they have taken.
She is going to refer me back to the Colorectal Surgeon I saw 5 years ago, get him to do an MRI and refer me to a GI. She also told me to go off the Mesalazine, saying that it wouldnt be helpful to someone in my situation.
I feel better after seeing her, like I'm one step closer to getting the help I need. So I'm glad that my usual doc was away! I just hope that the next step doesnt take too long!



serena

 

[Dexky]

Hi again Serena, how soon will you be able to see the GI? It seems kind of dangerous to have a crohns dx w/o being on any meds.

 

[rena_isis13]

Hi dex, I'm not sure how long it will take, dont have set date yet. Been told to but the mesalazine by one a week, so I guess if I start feeling yucky I could up them again?

 

[Dexky]

Oh, you haven't stopped it then just reduced it? I hope they can see you soon.

 

[Rob]

Welcome to the forum

hopefully you will get some answers with your next appt with ya gi