• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

3 years Crohn's, new to the forum

I'm Ian, I live in the uk and was diagnosed with Crohn's in 2009 after a case of iritis and two perianal abscesses. Since my diagnosis I was put on azathioprine and mesalazine and had a great if fairly normal life, got a girl friend, a house and a beautiful two year old daughter.

The start of this year though Crohn's reared its ugly head again, I started getting bad bowel habits and reccurent uti's that had me on my back and off work for weeks at a time. For the best part of 8 months I was referred from doctor to doctor and had numerous scans which were all inconclusive.

Eventually a surgeon diagnosed me with a small bowel to bladder fistula and operated at the earliest possible opportunity.

I'm now 3 weeks pot op and trying to get my life back on track at home complete with a reversible ileostomy.

At the moment I feel great, I'm enjoying food and being back on my feet after weeks of physio in hospital.

I'm a nervy person though and keep worrying about ending up back in hospital with an obstruction.

My partner has had a hard time adjusting to me coming home and my daughters scared I'm going to disappear at any moment and is scared to leave my side for a second.
 
I am sorry that CD reared its ugly head again after so many years of remission. I hope that now that the fistula is fixed you can start to get back to normal.

I feel for your baby I know how that is. I went in the Army when my daughter was young and when I got home from basic i could not even go to the bathroom without her at my hip. That just means you are truly loved.

Have your partner looked at any information on living a CD partner. There is even a section on this forum for support for out loved ones. As we all now this disease effects more than just us.

I do have a question though. I have been having non stop UTI's just as long as I have been having non-stop D's and has always wondered if there is a fistula there. I have had colon and bladder scopes that they say are clear but I am still convinced something is there. can you tell me what type of surgeon you went to and what test did they do to finally find it?

love your pic, reminds me of mt big brother. his ears were so pointy that my mom actually tried to tape them down when he was a kid. lol
 
Lol my ears are really just big not pointy :p but Spocks like my idol!

I saw prof Morton in the uk, he could tell what was happening from his own review of an MRI, CT and then his own CT with contrast and sigmoidoscopy. I sincerely hope you don't have a fistula as it is major surgery to correct. Though I did have other problems such as abscesses in the connective tissues of the bowel and a fistula in the sigmoid.

I was going to show my partner the forum, but I want to get comfy here first. I'm still learning to live with my self post-op and get used to my ileostomy and how I feel comfortable.

Thank you for your kind words of support it's nice to know there are others out there who know how I feel!
 

David

Co-Founder
Location
Naples, Florida
Hey there Pointy and welcome :)

In case you haven't seen it, you may want to check out our stoma forum.

That you developed a fistula while on the azathioprine makes me wonder if it's working as well as one might hope. Have they by chance tested your metabolite levels to see if you're in the therapeutic range? Or have they discussed the idea of putting you on a biologic such as Remicade or Humira?

We also have a forum dedicated to azathioprine located here if you want to connect with others on it.

All my best to you :)
 
Hey David thanks for the welcome, to be honest I think the fistula may have been there for a while as I have suffered with weird random UTI's since I was 16! :S But yeah they have discussed infliximab with me which I believe is a form of remicade! Luckily I had a fantastic colorectal surgeon who has removed all the diseased bits of bowl and bladder. The gastro team were amazed by the lengths he went to.

I've now been referred to Dr. Jason Goh for further treatment I heard he's a pretty big name in the field of IBD so hopefully under him I can turn a corner and come out of this a stronger and better person.

Thanks for the links, something else for me to check out :D
 

David

Co-Founder
Location
Naples, Florida
Ah, I see. And yes, Infliximab = Remicade. They're one and the same.

Thank goodness for your colorectal surgeon, he sounds like an amazing one.

Please keep us updated as to what Dr. Goh suggests for you.
 
Thanks pointy ears. since I am currently in the hospital I will get to see my GI in the morning. I will bring this up with him since I currently have a skin tag that might be hiding an abscess right now also. My WBC is pretty high and they are not really sure what is causing the infection.
 
I have recently started back seeing my urologist and I was actually suppose to go see him today. I was going to ask him to do another bladder scope to look for one. I will ask my GI for a surgeon referral in the morning.
 
I would, because they think differently to the medics and see the problems in a different way. My cystosocopy came back inconclusive. All they found when they did it was bruising and what looked like some bleeding or scabbing, it was the sigmoidoscopy and CT scan that eventually showed the fistula. The only problem is they need it active at the time of your scan to spot it.

I was sorry to see your currently in hospital, I hope you haven't been in for too long and have a speedy recovery. After not long being back out myself I can honestly say I sympathise!
 
currently on day 3 but not sure when I might get released. Every time I ask all they say is i don't know see you tomorrow. Ugh but at least they are keeping my pain at bay. I have not gotten much sleep but kinda like being waited on by the nurses. I am having terrible stomach pain when I try to eat regular food and then a little while ago I had a major angina flair up. They thought I was having a heart attack, thank God for nitro and morphine, i feel better now. Plus they can not get my BP to drop out of the very high ranges.
 
yeah it is nice to have someone wait on you hand and foot, it's just a shame we're not well enough to enjoy it fully. I had a few anxiety attacks when I was in hospital so my BP and heart rate were both high as a kite. They both dropped as soon as I was told I could get home.
 
I know that feeling. I think I got "white coat syndrome" my BP is always high as soon as get to the Dr. after I sit for a while it drops down to normal.
 
Top