Rectal Inflammation-Ileocolitis

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)

Kazbern said...
If you don't have fistulizing Crohn's now, you are not likely to develop it. It is often said that Crohn's presents one way or the other, and rarely changes its nature.

Hmm. Somebody on here who has had Crohn's for 22 years developed her first fistula a few months ago. However, she was also never in remission during that time: if she'd been able to get into remission for a long time, the fistula might never have developed.

Thing with fistulas (and strictures too) is that they can be both short term and long term complications of Crohn's: the disease seems to attack at variable rates in different people. Early onset Crohn's tends to be mainly inflammatory, and then develop into a stricturing or fistulising subtype (or both if you're really lucky) over time. I had ileocolitis for 13 years and ended up with a stricture in my terminal ileum and needing my entire colon removed, it got that bad: but no fistulas. My rectal inflammation was moderate, but not as bad as in the rest of my colon.

Much, much, much easier said than done, but I think you would be better off trying to accept that a few bad things might happen, but if they do, you'll deal with them as and when they occur. I'm a dreadful coper, but it's amazing what you deal with when basically you have no choice. Also, it's not all unremitting doom'n'gloom: most people go through periods of remissions and flare-ups, even the ones with quite bad disease. Remissions can last for years, even decades, at a time.

PS: I would recommend azathioprine. See dfdavedf's topic about thiopurines (azathioprine and 6MP are both thiopurines).

PPS: It wouldn't be a good idea to take rectal meds unless you actually have inflammation in the rectal/sigmoid area. Having solid poos with no urgency is a good sign, but if you're worried asked to be examined in that area.

Hope I haven't made you feel any worse... :-/

Thank you so much for replying everyone. I was diagnosed September 2012 with Crohns in my terminal ileum. It spread into my colon and rectal are in November 2013.

Kazbern I have been on 20mg of Prednisone since January 14th. It took this long to get on Prednisone since my flare in November bc my doctor decided to treat my flare up with Ciprofloxacin in December which I had a deathly reaction to and had to take the whole of December to recover (couldn't walk, sleep, numb limbs, couldn't eat, tremors, Parkinsons like jerking, hallucinations, heart racing and almost stopping). I couldn't throw Prednisone on top of all of that. My rectal issues have just become a problem. My GI is also refusing to give me enemas which is really pissing me off. I called the office to let him know that my rectal symptoms are worsening and I wanted to know why I cannot get the enema since he never gave an explanation well, the head nurse tells me "If you are not satisfied with the treatment the doctor is giving you you can find a new doctor and he will treat you while you do...." That ruined my whole day! I said to her "I am not sure what your notes say but I am not disagreeing with the treatment I am receiving. The prednisone is working for me but my rectal issues are not bettering and I would like something additional to take care of this problem. My vagina is throbbing, my poo is slim and long, I'm pooing frequently and sometimes nothing comes out." What do I do Kazbern?

Nicecupoftea you have not made me feel worse in fact, you have made me feel better by taking your time out to write to me. I would feel so much better about my Crohn's and the things that may happen along the way if I had a doctor I trust. I find my doctor a bit strange, nice for the most part but odd. I cannot quite describe it.

So this is what I did and I am going to write this in hopes that it will help someone in the future. I said to hell with Pentasa (for now) because it was not working for me and began taking these supplements instead in the afternoon after my morning dose of Prednisone:

MSM, Marshmallow root, DGL, N-acetyl Glucosamine, Potent Digestive Enzyme, Slippery Elm, Fish Oil, L-Glutamine. I take these on an empty stomach as directed. Would you believe that my rectal pressure has calmed down and my poo looks normal again? I can actually fart again! Also the urgency has went away. I also drink mint leaf tea with cinnamon sticks and cloves nightly and turmeric powder almond milk. My CRP has decreased greatly. (28 to 2.4)

I hope I didn't jinx myself....

Exit 4, could you check this doctor out for me and tell me what you think? His name is Dr. Albert Shalomov from NY Hospital Queens.

Literally couldn't agree more with Judy's post. Life is too short to be dealing with secretive doctors who have God complexes: been there, done that, worn the t-shirt. Look for a doctor you can trust; who you can communicate honestly and openly with. Refusing enemas without an explanation isn't acceptable. Also, antibiotics are not the best choice of med to treat a Crohn's flare-up, imo.

I'm glad you're feeling much better and your CRP has dropped dramatically. Hope it stays that way, but you do really need to be on a maintenance med. Azathioprine is a decent choice, but does unfortunately take 3-4 months to start working - forever, basically. Much more effective than Pentasa, though.

Good luck :p

Guess what Lamb? I'm crying on my bathroom floor right now bc I just discovered a RV fistula. I'm so distraught and disgusted with my body. I want to just die.....I feel I have been under treated and neglected as well. My sex life is over, there goes the little normalcy I had in my life with my hubby....I'm only 27.

Felt a ball at the entrance of my vagina and it had a hole on top. I decided to take a qtip and see it it'll go through and it did, it went all the way through to the other side which is my rectum. Mucus and blood came out. I also have tailbone pressure. I'm so ashamed an disgusted. Did this happen because my rectal inflammation wasnt treated with a cortifoam?

Yes, air came out of my vagina today when I tried to pass gas.

I scheduled an appointment with a new doctor for the 11th. I have an appt with my old one on the 7th and I'm not sure if I should bother with him. Still deciding.

Nicecupoftea, it seems my fistula is coming from my descending colon and not my rectum. Is this even possible? I inspected further and when I press on it my bladder/descending colon area moves. I'm so weirded out. I hope I get some answers soon from these doctors bc I'm scared. I just did an N Acetyl glucosamine enema to clean the mucus out and poo.

Post Edited (JajaBinks) : 2/3/2014 1:21:03 PM (GMT-7)

My son has had Crohn's since he was a teen. It was misdiagnosed as hemorrhoids. He's been on everything and has had several surgeries. He has an abscess that won't close. He went Gluten and mostly sugar free and has been doing great except for the abscess. He takes no medication right now, first time ever that I can recall. Dr. Mark Hyman is the one who treated him. He's been on Dr. Oz several times.

Kazbern, I have to strongly disagree about if you don't have it now you won't likely in regards to fistulizing CD...

I've had crohn's colitis for 23 years now this spring, my anus is where my CD stared with perianal crohn's skin tags, proctitis on and off over the years and it affected my small intestines for the first 2 years and had remained constant in my colon the entire 23 yrs as has the perianal skin tags and I just now (in September 2013) developed a retcovaginal fistula (2 actually). So there's definitely no guarantee that a fistual will not develop at some point for CDers.

I will also ad that my last scope I had a few weeks ago showed my rectum is completely inflammed and yet I still manage to get out bigger stools, they're not all skinny. It's a weird disease for sure.