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My journey with Crohn's

My journey begins in January of this year. I had just started my final semester of Seminary in Chicago (I am from Texas) and we had barely stared into the new semester, and I started feeling sick. I first thought it was just bad stomach flu, but I never really lost my appetite, nor was I really experiencing a lot of symptoms. However, there was this intense pain in my abdomen; it was so bad I could hardly walk across campus, and I knew I had to get help. I called a friend with a car and we went to the ER as quick as we could, and at that time I thought that it might be my appendix. After lots of tests, they found a tennis ball sized abscess in my pelvic cavity and to treat it, they drained it. I was in the hospital for a week and had to wear the drain for three weeks. After it was removed, I started feeling better, but then, all of a sudden; I started developing painful bladder infections. From March through May I was trying to kick the infection with different antibiotics, stronger antibiotics, etc. After surviving the most difficult semester of my educational career, I went back home to Texas to get more treatment. After more painful tests, I was diagnosed with Crohn’s. I now see a Crohn’s specialist once a month and I love working with him because he treats me like a person, I am able to text him with questions, and he only sees Crohn’s patients so he knows what he is talking about. As of now, I don’t have to have surgery right now, but later (do know how much later) I will. I am also on flagl, macrobid, Imuran, many supplements, and I just recently started Humira.

I also am a youth director at a local church, so I need the energy to keep up with the students. So far, things are off to a good start and the church is very supportive when it comes to my therapy and they understand when I don’t come into the office every day and work from home.

That’s my story!

:dance:
 
Welcome to the forum!
You have been through a lot in a few short months. I am sorry you have Crohn's but you are one of the lucky ones who has been diagnosed quite quickly and put on medication to help control the disease. It could be years before you have to have surgery or, unfortunately, it may come sooner than you want! It sounds like you have a great doctor and that he has you on the right path! Take care of yourself!
 
Thanks Z Ghost and Patty! It feels good to talk about this disease with others who understand what we go through. Currnetly, there isn't a support goup in my area, so I have been looking for a place like this to find support and read what others have been through.

I forgot to add that my GI doc thinks that I have a fistula going from my colon to my bladder, but the surgon I saw thinks that the pressure I feel on my bladder is just the inflamation. How would I know if I have a fistula or if it is just the inflamation?

Thanks!
 
I've never had a colon to bladder fistula but I have had an anal - vaginal fistula and currently have one that goes from my intestine to my belly button area. The way I know it is a fistula is because it drains feces. In your case, you may see urine in your poop or poop in your urine. I am sure someone else will have a better answer for you.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Why is it thought that you will definetly have to have surgery? What supplements has the doc prescribed? How long have you been on these meds and at what dosages? Has any type of diet changes been recommended to you?

I have not had a fistula either so could not advise on this but do check out our sub forum for these as the folks here can tell you what to look out for: http://www.crohnsforum.com/forumdisplay.php?f=76.

Am glad you have decided to join and hope you can be feeling tip top soon.

AB
xx
 
I think that I have to have surgery becasue when I had my colonosocopy in June they saw six inches of diseased colon. So I think they will want to resection that part if and when I start to develop different symptoms.

For supplements I am taking, vitimine C, D, B-12, and cranberry. I have been on these since June as well.


Other meds... I can't remeber off the top of my head, but I know that the Iumran is a pretty big dose becasue I take it at bed time. I just started the Imuran about a month ago. The antibotics I have been on those since June.

As far as diet, I am able to eat just about anything excetpt nuts, seeds, and popcorn, And the popcorn really upsets my stomach.

Hope that helps.
 

Angrybird

Moderator
Location
Hertfordshire
Thanks for the extra info, the Imuran can take up to about 3 months to work so you may not be feeling the full benifit of it yet. With regards to the supplements are these tablet form? Have you had your vitamin levels checked recently to see what the level they are at?

With regards to the colonoscopy was it scarring or inflammation that was found? My understanding is docs only tend to operate if scarring has developed enough to now be causing a narrowing (aka a stricture) as meds cannot sort this - surgery would then be required to remove it.

AB
xx
 

David

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

I love the doctors who only see Crohn's patients. It's such a specialized field that I love when people here are able to get in to see a doctor like that. If you ever want to review him in our doctor directory for the benefit of others, please do (see my signature).

Out of curiosity, have they done a CT scan? They might be able to see if there is a fistula tunneling into your bladder that way. Other than that, PattyLynn hit the nail on the head. That you're having UTIs and already had an abscess does make me concerned that it's a fistula.

We're here for you! Please keep us updated as to how you're doing.
 
Angrybird, yes all of my supplements are in tablet form. My next blood work appointment is on the 21st. When they did the colonosocpy it was mostly ulcers they found in that six inches.

David, Yes, they did do a Urogram (CT Scan with die injected into the vains) back in May and I think that is when they saw a fistula, and the colonosocpy report confirmed it. But I am still confused as to why the surgon thinks that it is just inflamation. I think the problem is that when I had the Urogram done it was at a different clinic then where I am recieving treatment now, becasue at that time, we did not know it was Crohn's. So we are trying to get the reports from clinic 1 to clinic 2. Now that we know it is for sure Crohn's, I am having all my treatments done at one clinic. :confused2: Confusing... I know right!!
 

David

Co-Founder
Location
Naples, Florida
I don't know why the surgeon would think that other than maybe not having all the pertinent information. Once they get all the information I'm sure they'll be able to make a more informed diagnosis. And hey, hopefully they're right and it's just inflammation :)
 
GuitarJamie

Thank you for sharing your story. I too live in Texas and I am wondering about your Crohn's only doctor. I would really like to have a doctor that deals only with Crohn's. My GI is good but doesn't seem super confident. I now have 3 fistulas and which have draining setons in them.

I thought that I may have a bladder fistula because I was having recurrent UTI's (like 3 back to back) when I've never had UTI's in my life. I was also having pressure and bladder irritation. How do you tell if your having bubbles in your urine? Doesn't it just make bubbles when it hits the water in the bowl? Sorry to sound simple but I see bubbles in the bowl too.......

Hope you get some answers soon. Take care!
 
Shermel,

I had to laugh when I read the last part of your post becasue I have the exact same question!! Not sure if I mentioned it above, but I too might have a bladder fistula. I am going on Tuesday to have a urine sample taken since I had an incedent over the weekend when I passed a large piece of tissue in my urine.

As far as my doc is concerned, his name is Dr. Timothy Pfanner and he is in the Scott and White network. He is a GI doctor that specializes in Crohn's. He also has a team of people that are used to seeing Crohn's. He works mostly out of Temple, but I will see him when he comes to Waco and I can do all of my lab work at the Waco clinic. Not sure if you really want to drive all this way every time you need to see him, but he does answer his phone (text messages only) before the end of the day if you have a problem or question.

Hope that helps!
 
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