Does Rectal Inflammation Necessarily Lead to Complications?

[Jajabinks]

Hello everyone,

Finally decided I would join the forum instead of lurking like a creep. Lol! I was diagnosed with Crohns disease of the terminal ileum in September of 2012 with symptoms for a year prior (2011). In November 2013 I had my first real flare in which the disease spread up to my cecum and left side colon. Since then I have been feeling slight pressure in my rectal area (slight throb) on and off and my GI said "I hope you do not have rectal Crohns as it can be very painful and hard to treat." His comment scared me so much and now I cannot stop obsessing.....

Since this flare I am experiencing lots of anxiety about what is in store for me. I changed my diet drastically and cut out all processed foods in an effort to avoid fistulas and all the unpleasant things that occur with ileocolitis. My poos are solid and soft, easy to pass.

My question is, does rectal inflammation always lead to fistulas and complications? I am a 27 year old female scared to death of vaginal and peri-anal fistulas. I am currently taking Pentasa and Prednisone 20mg. The Prednisone seems to be working (I feel some bruising in my abdomen....strange). My doctor wants me to think about going on Azathioprine. I asked him for enemas but he told me to wait and see how Prednisone works. I really wish he would prescribe it to me because I want to attack the swelling in this area as best I can....

Any ileocolitis Crohnies out there? Need some support...anxiety is high and I am worried about not being a good parent to my son due to this illness. It's really messing with my head now.....

Post Edited (JajaBinks) : 1/29/2014 9:33:41 AM (GMT-7):confused2:

 

[Cross-stitch gal]

I do not know much about ileocolitis crohn's. But, I do know that rectal inflammation isn't always fun. All you can do is your best to take care of yourself. I'm sorry to hear of the comment from your doctor. We are here for you. There are many of us here for information and support. Sending hugs your way.

 

[JMC]

your pattern of disease sounds very similar to mine. I had a right hemi-colectomy in March 2012 but have also have surgery on a peri-anal fistula.

My question is, does rectal inflammation always lead to fistulas and complications?

My rectal inflammation first started in about 1991 and I got a very bad fistula and abscess in 1998, so it progressed slowly but steadily. In between I had a number of episodes like the one you appear to be suffering with currently, during which I had a small lump and burning discomfort from my rectum.

Although I cannot predict how you disease will progress, you need to be very careful and you need to make sure you always have medical attention during each flare - I didn't do this, I just accepted the pain and problems which was a mistake. Without the right medical intervention, I would say there is a good chance your issues will become progressively worse over time.

I also take azathioprine. It is very effective at reducing inflammation and specifically is very good for controlling fistulas. I have been taking azathioprine since 2005 and during that time I have been completely free of issues with peri-anal fistulas. If you doctor is recommending you take the drug, I would do it as in my opinion it is preferable to steriods.

 

[VeganOstomy]

My rectal disease was very aggressive and only removing it helped. One of the first symptoms I had for Crohn's disease was pain while sitting (an abscess in the making) and that well before any digestive-related symptoms came up.

Prednisone seemed to help close up a few fistulas in a very short time, but they came back with force when I had to come off pred due to severe side effects.

 

[Jajabinks]

You guys have no idea how much your replies mean to me. I have been going crazy over this and I am still in shock about this disease spreading so quickly into my colon. I have been through a lot as of lately. I flared all throughout November on and off and my first GI claimed she did not know what was wrong with me since my blood work was fine (she was being lazy I think and conservative with prescriptions) and she referred me to the doctor I have now....so December rolled in and my new doctor prescribed me Cipro for my flare up. Well, this medicine almost left me handicapped. It took me a whole month to recuperate and regain strength in my limbs. I had a lot of central nervous system problems (Parkinsons like symptoms), it was the scariest time of my life! So for the whole of December I didn't take anything while I recuperated....

Finally, in January I went back to the doctor and he gave me Prednisone. I am so confused as to why he does not want to give me enemas. He keeps asking me if I'm "leaking" and I said no.

Today I went to use the bathroom for the third time in 3 hours. My poo was like 20 inches long and thin with little white flakes around it!!! It was so freaky!! I called his office again to let him know that my rectal issues seem to be worsening.

JMC, was my flare up handled incorrectly in your eyes? What is your advice on flare ups? I was never given any by my original doctor and feel so neglected.

Vegan I'm sorry you went through that. What treatments were you receiving? What worked and what didn't? Thank you for sharing your experience with me. Really, thank you!

 

[VeganOstomy]

Vegan I'm sorry you went through that. What treatments were you receiving? What worked and what didn't? Thank you for sharing your experience with me. Really, thank you!

Steroid enemas, anti-inflammatory drugs, Humira, prednisone, antibiotics and finally surgery. My perianal disease was quite severe and there was no point of patching the fistulas (i.e. with a seton) because the disease needed to be controlled first, so while not directly addressing the fisulas, my proctocolectomy indirectly solved the problem.

Once I'm fully healed, I plan on writing about my experience and also plan to release a slideshow of the progression from diseased to healed (with a disclaimer, since the photos are a big graphic). Looking at what I've put together so far, the changes are quite dramatic. If anyone's interested in a sneak-peek, I'd be happy to share, just PM me.

 

[JMC]

I had a lot of central nervous system problems (Parkinsons like symptoms), it was the scariest time of my life! So for the whole of December I didn't take anything while I recuperated....

Are your vitamin B12 levels ok?

JMC, was my flare up handled incorrectly in your eyes? What is your advice on flare ups? I was never given any by my original doctor and feel so neglected.

Yes, your doctor is trying to get the inflammation under control with antibiotics and steroids. I have been prescribed ciprofloxacin (usually in combination with metronidozole) on several occasions. The next step would be to consider azathioprine.

 

[Jajabinks]

Yes, I was taking a lot of B12 after my reaction to Cipro to try and recuperate. My B12 blood work has always been good. Guys, I just really hope this disease doesn't affect my whole life...socially, sexually...this Prednisone makes me so weepy. I cry and cry every evening and it usually takes a hug from my hubby or a talk on the phone to get out of this state. I keep reading about folks dying from this and the disease eating away at them slowly. It's so scary to me and I just feel so hopeless sometimes....

 

[Cross-stitch gal]

White flakes sound like possibly mucus. I get lots of mucus in my bms at times. My doctor isn't worried about mucus. It's mostly diarrhea and blood he's worried about.

 

[JMC]

Try not to be scared and remember there are plenty of people out there who have been through what you are going through (and worse) and live perfectly normal lives. That is not to say it will always be easy, but never, ever let it get you down, this is the one and only life you will get, so make the most of it.

To put it in perspective, I was first ill in 1981 aged 9 years. The first time I needed surgery on a fistula was 2001 (about 10 years after first getting symptoms) and I had a resection shortly after my 40th birthday in 2012. For three months I had an ileostomy, then it was reversed. How do I feel now? Mentally and physically much stronger, it didn't kill me and I learnt a lot.

 

[Jajabinks]

JMC it brings me great comfort to be able to speak to someone who has had this since childhood and is living life. I think I am going to go ahead and take the AZA after the Prednisone taper now. So what you are telling me is you were able to save your rectum? Did the AZA helped with the pressure in the rectum? Also, what side effects should I be looking out for with AZA and what dosage did you first start on?


Cross stitch, my mom has UC. I often wish I had UC instead. Lol! My crazy brain seems to find it less scary then Crohn's. My mom goes through really rough times too though. She's holding on to her colon.

Thanks again guys!

 

[JMC]

JMC it brings me great comfort to be able to speak to someone who has had this since childhood and is living life. I think I am going to go ahead and take the AZA after the Prednisone taper now. So what you are telling me is you were able to save your rectum?

I had a really bad fistula (the hole was finger sized when they opened it up) that went through my anal sphincter, so I was at risk of becoming incontinent. I had surgery on it three time and a seton stitch for about a year, but it was completely fixed. It's not pretty, but thankfully I don't have to look at it.

Did the AZA helped with the pressure in the rectum?

The surgery fixed the problem, the azathioprine has prevented it from coming back for the last 9 years. Your pressure may be an ulcer/abscess. These can come and go, but you are doing the right thing to minimize the problems with antibiotics and steroids. If it were to develop into a big fistula and abscess (mine burst through the skin of my buttock with lots of blood and puss and would not heal) it is highly likely you will need a minor surgical procedure to get rid of it.

Also, what side effects should I be looking out for with AZA and what dosage did you first start on?

I essentially have no real side effects from taking it as I tolerate it well. If you do get side effects, they can be serious which is why you will be monitored closely and need regular blood tests (every 2 week initially, then every 3 months). I started on 50mg per day, I now take 150mg per day, but it is based on body mass so you will be prescribed something appropriate for you.

Cross stitch, my mom has UC. I often wish I had UC instead.

Interestingly, my Dad had UC

 

[Jajabinks]

JMC, thank you so much for that useful information and I am glad you healed. Hopefully, if that were to ever happen to me, I can recover also.

You wrote to me as I was speaking to my doctor's office lol! I am a bit aggravated :ymad:at the moment bc my doctor's office just told me that if I am not satisfied with the care my doctor is giving me I can find a new one and in the meantime, he will still treat me. The head nurse told me this in a very cold way. I told her I am not sure what the notes on her end say but I am just calling bc my bowel movement habits have changed and I feel I need to treat it with enemas, I am not disagreeing with the treatment I am getting as it is working for me at the moment but not for my rectal symptoms. She said that it's possible it's not rectal and I can come in at 5pm today if I'd like to but she cannot guarantee that I will get an enema from the doctor.

I feel that they don't like that I want to be a part of my treatment decisions and the fact that I called twice about these symptoms but I thought that is what my doctor is there for and I am not one to call for any little thing but my stools are looking quite strange and my butt just doesn't feel right! Sighs....maybe I will try to see another doctor. I'm so frustrated.

How was your dad's UC? You said had....is he still around? I got Crohns after a course of Naproxen 1100mg a day for tendonitis. I think it triggered my disease.

 

[Amaze]

I'm in my early 20's with anal crohns. I just discovered I had 2 fistulas and ulcer after 1 month of being off of prednisone. According to a thread in the ask a expert section prior steroid use has lead to fistulas in many patients including myself.

 

[Jajabinks]

Amaze, I'm interested in knowing how that happens. I thought prednisone brings inflammation down which helps avoid developing fistulas however, my rectal symptoms are getting worse which I'm not understanding. My poo is getting thinner by the day and the pressure is getting a bit worse. I have an appt at 5pm and I may ask him to taper me off.

 

[Amaze]

http://www.crohnsforum.com/showthread.php?t=50497

Check out this forum.

 

[Jajabinks]

Amaze I just read your post on that thread. I see your doc had you on it for 6 months? Why? What were your symptoms and where was your disease located prior to taking Prednisone?

 

[Jajabinks]

Hey JMC, just discovered I have an RV fistula. I knew something was not right with this throbbing sensation. I really wish my doctor would have addressed my rectal inflammation back in November. I feel a cortifoam would have prevented this from happening. I feel so sad today and I am hoping this does not affect my personal life with hubby. I also have pressure in my tailbone...I feel this disease is getting the best of me now.

 

[Jajabinks]

May be rectal or coming from up above where the colon and bladder meet. Not sure.

 

[JMC]

Hey JMC, just discovered I have an RV fistula.

Really sorry to hear that, I hope it gets sorted out quickly

 

[lgpcarter]

I'm in my early 20's with anal crohns. I just discovered I had 2 fistulas and ulcer after 1 month of being off of prednisone. According to a thread in the ask a expert section prior steroid use has lead to fistulas in many patients including myself.

That is not what the thread you linked to says. The question was asked if prednisone causes/increases risk of fistulas, etc as someone (a doctor, apparently) once posted that on the forums, and the expert doctor consulted did not say that it does. He said he minimizes steroid use but not because of that.

 

[Jajabinks]

Thanks for the clarification IGP. Are you male or female? Any advice on my newly found rectovaginal fistula? Crisis over here. I can't even concentrate on my schoolwork at the moment.

 

[lgpcarter]

I am on my iPad, so a bit of a pain to write a long response, but a couple of things to comment on while I wait for my ancient laptop to charge so I can write more -

My understanding is either you have fistulizing Crohn's or you don't. Would more aggressive treatment at the outset have prevented a fistula from forming? Maybe, but chances are that you would get them down the road. I am not sure that enemas would be enough to do the trick on that - have to get the systemic inflammation under control.

I have ileocolitis and perianal disease. Three fistulas, skin tags and some narrowing/scar tissue in my rectum. It is definitely miserable in a flare, but I had 9 solid years of remission and only minor issues with my fistulas during that time.

Don't be scared by things you read here. There are lots here with very severe and active disease. People tend to be less active when they are feeling well.

More later when I am not trying to wrangle a two yr old into bath and bed.

 

[Jajabinks]

IGP, no problem. I have a child too and an ipad lol, I get it. Thanks for taking the time to write to me.

 

[lgpcarter]

Thanks for the clarification IGP. Are you male or female? Any advice on my newly found rectovaginal fistula? Crisis over here. I can't even concentrate on my schoolwork at the moment.

Female. None of my fistulas are vaginal, so a little different, but usual drug treatments are Remicade or Humira (Remicade better for healing/closure of fistulas) or possibly surgical intervention.

There is a sub form for abscesses and fistulas - you'll find it under Surgery.

 

[Jajabinks]

I have ileocolitis also. Where are your fistulas located? Sounds bad but I much rather have it elsewhere than in my private. Kind of wanted another child and scared of yeast infections. I will discuss biologics with my doctor. I try not to let the scary stories get to me but right now, I think I am in the same boat lol.

 

[Mistybear]

So sorry you have to go thru a Rvf, what a nightmare! Make sure you get a top notch CRS that has experience in addressing this issue. Maybe remicade or humira will help close it. Stay positive and hopefully it can be resolved!

 

[Jajabinks]

Thanks Mistybear, I will try to find a good CRS. From what I am reading, RVF are one of the most difficult things to treat in CD. I feel so awful today.

 

[Mistybear]

They are, it took about 1 year to close mine. It's hard, also due to the nature of this crappy disease, it's not like you can have a conversation with just any one and vent your frustrations. A friend of mine told me "to get over it"! So after that conversation, I don't think I told any one else except my mom and sister. It was emotionally more painful than the fistula itself. Good medicine and Drs hopefully will fix your problem, but they can't fix your soul!!

 

[Jajabinks]

Mistybear I haven't even told my hubby about it. I turned to this support group and another one on Facebook where lots of people understood my pain but no one in my "real life" will know about this I will keep the faith and hope that this will resolve like yours. How did you manage to get yours to close? I read that with Remicade, only 14% of them close. I don't think it's worth taking the risk with that medication. Might mess something else up in this strange body of mine....

 

[Mistybear]

Hi Jajabinks, sorry I did not respond to your post, I have not been on the site for about a week. As far as my fistula closing, I had a seton put in. I don't know if I would do it again, I had a lot of pain with it and I guess I was thinking of the end result! Even though it was resolved, it was really hard to get through it! You almost feel like your on your own. I did try remicade but had reaction to it, I am taking humira now and it did help close the last fistula(not rvf) so you may have great success with the biologics. Keep the faith and find a good CRS!!

 

[Jajabinks]

Hey JMC and Mistybear, it turns out I don't have a fistula (yet) but instead, I may have Anylosing Spondylitis which was causing the buttock pain and throbbing. I am very depressed these days. I'm in a really dark place.

Try not to be scared and remember there are plenty of people out there who have been through what you are going through (and worse) and live perfectly normal lives. That is not to say it will always be easy, but never, ever let it get you down, this is the one and only life you will get, so make the most of it.

To put it in perspective, I was first ill in 1981 aged 9 years. The first time I needed surgery on a fistula was 2001 (about 10 years after first getting symptoms) and I had a resection shortly after my 40th birthday in 2012. For three months I had an ileostomy, then it was reversed. How do I feel now? Mentally and physically much stronger, it didn't kill me and I learnt a lot.

 

[VeganOstomy]

Hey JMC and Mistybear, it turns out I don't have a fistula (yet) but instead, I may have Anylosing Spondylitis which was causing the buttock pain and throbbing. I am very depressed these days. I'm in a really dark place.

Will you be having more tests to confirm that? Does your doctor believe they can help reduce/eliminate your symptoms?

:hang:

 

[JMC]

Hey JMC and Mistybear, it turns out I don't have a fistula (yet) but instead, I may have Anylosing Spondylitis which was causing the buttock pain and throbbing. I am very depressed these days. I'm in a really dark place.

Really sorry to hear that, I hope things improve for you soon

 

[Jajabinks]

Yes Vegan, I am. I see my GI end of the month and my rheumotologist in April. Currently, I am being tested by my primary with the gene test. I will keep you guys posted. Anyone have any experience with this?