Scared - Perianal disease

[dguy]

Hello guys,

I just need to get the fear out of my chest and check if anyone had similar experiences with perianal disease.

I am a 24 yo male and have recently graduated in engineering (as of last December), I was having a very happy and successful life ( lived alone, had my car, good job in my field). Was gonna move to a bigger city in March and work on a new job but after a diagnosis that I was not dealing only with a fissure, but maybe CD, cancelled my plans and begged my current employer to keep me just 5 day before what was supposed to me my last day.(I had asked to quit, but fortunately they still need me!), so I could stick with my insurance and current GI through this diagnosis phase.

Now i have no car and living with my parents again, since I was already on the verge of moving. I felt a little for loosing my independence in the beginning but its been great! My folks couldnt be more supportive!

Now to my suffering. My perianal discomfort started last august, was diagnosed with a simple and small fistula and had it removed late in november in a surgery. It didnt hurt or bug me much apart from a skin tag I also had. Everything was going fine until January when I had a fissure (boy, did it hurt! And bleed a little during BM) that just wouldnt heal.

It got persistent and my anus was inflamed. It stopped aching and bleeding around 3 weeks ago, when my doc gave me a possible diagnosis of perianal CD. I was on a lot of meds, 15 pills a day(flagyl, ciproflaxin,mesalisine,predisone,folic acid), now im down to mesalisine and tappering off predisone. I hardly notice any pain or significant disconfort anymore.

I just notice a very slight and dull sense of itch or disconfort if I walk around to go somewhere or carry weight, nothing that bothers too much though.

The thing is that instead of feeling better and good and pain free as I am now, I have just been completely devastated and really scared about having CD, specially in the localtion I have(perianal). I have found some really discouraging statistics and information with regards to poor prognosis of perianal disease, I feel like I am basically just waiting for the worse to happen down the road, as I read in every papper and med article how challenging dealing with anal complications is and the prognosis. That is really bringing me down psychologically.

I have absolute regular BM once a day when I get up, normal stools, now pain free, and dont feel anything wrong outside my anus. I have been noticing "noises" or dull aches every now an then somewhere in my tummy, maybe in my stomach, I dont know, but i think its more psicological, like I am paying attention to i now after the hypothesis diagnose.

Its still a possibility but my GI is pretty suspectful given my clinical history, the way the fissure and fistula apperead and inflammed and response to meds. We will wait for more consistent healing and ceasing of inflamation then go for a colonoscopy.

Sorry for crying out like a baby when I should get happier as my symptoms cease, but just wanted to check if anyone could relate to being so scared of the prognosis of perianal disease and the first break of the diagnosis, and have any tips on how to deal with the anxiety.

 

[valleysangel92]

Hello, welcome to the forum

I don't have any experience of peri-anal disease myself, but I can definitely relate to the fear that this disease can cause. Crohns made me loose my independence, my education and most of my friends because I was too sick to go to university lectures, meaning I had to drop out, I then had to move back in with my parents, and there were times where I couldn't make my own sandwich never mind anything else (I have other health conditions as well though, which impacted on how my body reacted). I have since had successful surgery (medication wasn't working for me) and hopefully will be heading into a job and eventually back to university when my other issues have been addressed. After all this, of course I worry sometimes what would happen if crohns reared it head again, especially if I had just gotten back to university or I was newly qualified ( I want to be a nurse).

I have decided this - There is always that possibility that crohns will strike, I can't predict when, or how, or what I'll be doing at that time. So worrying about the 'what ifs' will achieve nothing except making me too scared to get on with my life and be the person I wanted to be before all this started. I will grab the good days, make them worthwhile and productive. I will cherish every moment I get with my partner where we can be a 'normal' couple, I will be the best auntie I can to my sisters' children, and when I have my own, I will be the best mum I can. I will work hard to save money for uni, and I will not take it for granted. If/when the crohns comes back. I will fight it, because I would of made myself a life worth fighting to keep.

The important thing to remember is that now you are getting diagnosed, your doctors should keep a closer eye on you, with regular check ups and blood tests to see how you are progressing. I know it is hard to switch off, but most of the things you are noticing have probably been there all along, everyone's tummies make noises, and most people will find that it takes a while for the pain to totally go. Remember that although you still have these aches, you are better than you were, which means the medication has been working and there are new break-throughs all the time. The colonoscopy will allow your doctor to see whats going on more clearly, and make sure an appropriate plan for treatment and follow up is put in place.

Try not to worry, I know its hard but stress is IBDs worse enemy. Also, do yourself a favour and leave Dr. Google alone. The internet is a wonderful thing, but it can cause a lot of problems, the issue is that the bad stories get published and the good ones don't. If you think about it, when you buy a product, you are more likely to report on it if it malfunctions than if it works brilliantly. The same goes for everything, people report when they get sick or the meds fail, because they need to get it off their chests and/or get support, but they don't report so much when they are better because they are busy making the most of their new found health.

If you need information on crohns and colitis, you can check out the crohns and colitis foundation of America which has lots of reliable information on the conditions and the treatment options. You can also ask us anything you are unsure of, and we will do our best to answer. If there is anything we don't know we will try to point you in the right direction and at the very least we will do what we can to support you.

 

[hurla31]

I also have perianal disease. I didn't really understand what was going on at first. It happened two years ago when I couldn't have a bm without excruciating pain. So much blood. Then I was admitted to hospital and diagnosed. In the past 2+ years I have learned a lot. The biggest struggle has been to realize everything now is a NEW normal. Coming off the prednisone was tough for me it was a false hope, made me feel great at the time but eventUally I had to move onto remicade. I have had a couple surgeries for abscesses and fistula. I truly thought they were all gone but MRI shows many tracts going on down there. I do have side by side fistula now that the remicade has not cleared. Nor has cipro or flagyl. Everyday is different. Some days much better than others, the only thing is you need to talk to someone about it. It's hard to deal with it all on your own ! Keep your head up, this forum is great to get things off your chest!