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Proctitis diagnosis, Athlete needing advice.

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Posted 6/6/2014 10:12 PM (GMT 0)
Hello everyone I have been frequenting these boards for a few weeks reading ALOT about UC and Proctitis and treatments used for them both.

Quick story: I am a very active individual, I run and also train 5-6 days a week. I have always had the most uncharacteristic and unpredictable bowel movements, but NOTHING like some of the cases I have read on hear about peoples flares. My stool is almost always formed, but that's about the ONLY thing consistent about it.

It wasn't until about 8 months about when I started getting pain in the extreme upper right quadrant that I even saw a doctor, because symptoms were so mild. "He assumed it was reflux", but when omneprazol did nothing they followed up with an EGD, that showed gastritis. Mind you, this pain is in my liver region at the crease in my chest. They later did an abdominal ultrasound, HIDA scan, liver profile panel, Abdominal and pelvic CT with oral and IV contrast, and lastly a colonoscopy after a recent bout of "rectal pressure". The only findings from any of the tests and biopsies was the inflammation of the rectum and a borderline to mild Spleen enlargement on the CT that they brushed off as nothing.

The proctitis looked to be a mild case of ulcerative proctitis that he thought was a "fluke". He put me on canasa suppositories and the biopsies came back "normal".

So now my frustration is what to do, where do I go from here? I don't have bleeding or diarrhea but the rectal pressure comes on randomly daily. I have always been a big consumer of sugar and breads, which have not had ill effects on my body because of the activity level, but after all the reading I am thinking they may have caused all this over time.

So I would love an opinion on what to do next, I have considered the SCD diet and ordering the book, but I understand the strict nature of the diet is a HUGE undertaking. I want to ACT EARLY before it progresses to the severity I see a lot of you suffering with.

Please any advice at all would help. Thanking you in advance.

Posted 6/6/2014 11:26 PM (GMT 0)
Hi and welcome to the forum. I started out with inflammation that was considered left sided UC in 2009. As of a little over a year ago I now only have proctitis 2cm of inflammation. Not everyone gets worse. Doesn't mean I won't later on but right now I am doing better. Keep using those suppositories. You could also request enemas as they can go further up. I don't know how far up your proctitis is.

I don't use a specific diet. I just stay away from spicy food which also aggravates my gastritis and I know I can't do a lot of raw veggies.

I take a prescription for my gastritis and for me my symptoms of that were pain in the chest area and extreme nausea.
Posted 6/6/2014 11:27 PM (GMT 0)
Welcome to the forum, Spartan.

I hope you can feel better about bread and sugar - there's no scientific evidence that these cause rectal inflammation.

I would like to know if the canasa relieved your upper right quadrant pain? I guess it didn't relieve the rectal pressure. It would be good if you could post the actual biopsy results. "normal" doesn't make sense in the context of visually observable inflammation.

did you have a fecal calprotectin test? this would identify any evidence of inflammation anywhere in the digestive tract I think. Colonoscopies don't go higher than the terminal ileum. If the FCT comes back positive you might consider swallowing a pillcam.

I've had lots of upper right quadrant pain and after years of this and many test, my GI and I determined it was probably due to slow bowels. I take psyllium every day now to keep my bowels moving, and I know when I'm falling behind I'll start to feel that pressure in the upper right. I wonder if this would be something for you to think about. I'm betting with your active athletic lifestyle and your reliance on "bread and sugar" you are probably not moving your bowels every day.
Posted 6/6/2014 11:42 PM (GMT 0)
I've had proctitis for 20 years or so. The canasa suppositories have always helped me and hopefully in time will help you as well. I don't think your diet caused your illness. No one seems to know what causes it but my understanding is that food and stress can aggravate it but are not the cause of it. I have read that too much sugar can irritate proctitis so maybe you could try cutting back a bit. As far as specific diets go I'm sure you've gathered that every one seems to have different experiences with food. There doesn't seem to be one sure way to control this illness through food. Many give up gluten and yet I tend to eat a lot of white toast when I'm flaring and it helps to calm things down for me. You will only be able to figure out your triggers through trial and error. I'm sorry that I can't offer a better answer. Generally foods that are spicy, fried, very rich, or fatty are problematic and yet there are some people who say that food has no effect on them. I've given up alcohol because I found it triggered me but others can tolerate it.

Medication is also tricky because I've found something will work for a period of time and then I'll need to try something else. The rectal meds are usually a good alternative because the medicine gets right to the problem.

As far as your lifestyle, I say keep up with everything for as long as you can. I've gone for years in remission where I can be very physically active but have had stretches of a year or more where I have not been physically able to be active and it can be depressing. The more you can maintain your regular activities the better off you'll be. But don't be a hero and if you need rest make sure you get it.

These are just my opinions/experiences and others on this forum may disagree so at the end of the day you need to trust your instincts (and hopefully a good, caring doctor) and see what works for you.
Good Luck!
Posted 6/7/2014 1:24 AM (GMT 0)
Have you taken any special drinks like protein shakes or any other things ingested for your "training"? I have noticed a whole lot of people who are into this active training lifestyle who come down with UC. It seems to be much, much more than just random chance. I strongly believe that these things ingested due to this lifestyle have a lot to do with it. I wouldn't be so easy to blame sugars and breads. They may or may not be guilty. The SCD diet helps some but don't go into it thinking that if you do it right you will get relief. You may and you may not. No guarantees.
Posted 6/7/2014 2:23 AM (GMT 0)
Thank you all for the replies.

Kazbern, sorry for the vague description of the biopsies. The rectal biopsies showed no malignancy or bacterial diseases? I don't have the results with me just the nurses explanation over the phone.

I also have had no fecal tests and the canasa does nothing for the high RUQ pain. They do help with the pressure but I only used 2 days then after a week It came back so I started them again. They seem to give me a tender abdomen but get rid of the pressure. I also move my bowels PLENTY, 2-3 times per day and ALWAYS after morning coffee lol.

Thank you Hagz for the reply. I think a caring GI doc would be nice, he seems like I'm in the way and my concerns aren't serious. My PCP is wonderful.

Sherbear, thanks for the encouraging prognosis you recieved recently.

I guess the only thing that makes me curious about diet is it seems the only people who "cure" their disease se to do it by diet? I really don't want to diet I was just hoping to rid this annoyance for good.

I see a lot have used the canasa for LONG periods of time. At $65 for 12 suppositories I can't imagine doing this for a long time?
Posted 6/7/2014 2:29 AM (GMT 0)
Thanks garylouisville, I have used protien supplements many time before, but never consistently and haven't been on anything for awhile when this started. Might during a muscle milk once a month? On bad DOMS days, but that's it.

The ONE thing I can say I had been doing different for the year prior to this was drinking vegetable / fruit every morning. Using my nutribullet to liquify spinach with a bunch of fruit and drink it every morning. All that stuff was fresh healthy food though?

Currently for the last 2 weeks I have been on VEGAN shakeology, before my oatmeal breakfast is all. I started this recently.
Posted 6/7/2014 2:30 AM (GMT 0)
I think for the canasa to really work it needs to be used regularly. If the cost is prohibitive you can try other rectal meds. I could no longer afford the canasa after a change of health insurance plans and now use proctozone cream which is helping much to my surprise.

I am a strong proponent of changing doctors until you find one that is right for you. Good doctors do exist, they are just hard to find. I've been with my GI for 20 years because he is compassionate and always accessible to his patients. The last thing you need is a doc who isn't listening when dealing with a chronic condition. Try asking around for recommendations and check patient reviews online. Good Luck!
Posted 6/7/2014 2:38 AM (GMT 0)
Just another thought - I noticed you said you're drinking coffee. I gave up caffeine and it seemed to help. Now I'm feeling a bit better I'm having tea with caffeine but still not ready for coffee. See if it helps to stop drinking caffeine. I don't know about the juice - a lot of people seem to swear by it but I can't tolerate them at all when I'm flaring. I often say the colitis diet isn't necessarily the healthiest diet for me because I don't tolerate any form of fruit or vegetable, or even dairy, when I'm flaring I end up eating starches and protein. I usually keep taking away foods until I feel a bit better, then slowly reintroduce them to see what I can tolerate. I'm a little over the top with limiting my diet but I'd rather not eat something than deal with the pain and diarrhea I experience when I do. Not everyone is as sensitive to food as me and hopefully you won't be.
Posted 6/7/2014 2:44 AM (GMT 0)

Spartan1 said...
The ONE thing I can say I had been doing different for the year prior to this was drinking vegetable / fruit every morning. Using my nutribullet to liquify spinach with a bunch of fruit and drink it every morning. All that stuff was fresh healthy food though?

Once you already have UC I would say that in many cases this could make your UC worse as these things can be an irritant, even though they would be considered healthy for the average person. These things are usually very condensed, making their ingestion even worse for a UC'r. However, if you did not have UC in the first place while doing this then I doubt it was responsible for giving you your UC. However, it is possible you had a very mild case of undiagnosed UC during this phase and ingesting these things made you worse, bringing you into a flare and subsequent diagnosis. Do you remember having any symptoms at all during this time period?
Posted 6/7/2014 2:55 AM (GMT 0)
Thanks Hagz and Gary for the speedy replies.

I have actually been weaning myself off of coffee, I used to drink quite a bit and now am down to 1 mug in the morning. Coffee is one of the hardest for me because I enjoy it so much and it gives me a morning BM.

Gary, all I know is that before I started those drinks, fresh fruits and veggies liquified, that I had never had ANY symptoms other than an abdominal spasm years ago that literally looked like a baby kicking in the same spot my "liver pain" is, but that was like 5 years prior to this and just went away. I had been juicing prolly 6 months everyday before this started? And continues for months after until it recently got slightly worse so I'm trying to change something! Anything! I'm really confused to be honest
Posted 6/7/2014 3:05 AM (GMT 0)
Here's the thing about proctitis. It is a chronic condition. It is not "curable," unless you consider surgery to remove your rectum a "cure." A good way to stay healthy is to use a mesalamine rectal med for a looooong time.

Yes, Canasa is expensive. I would suggest that you use a rectal mesalamine suspension enema, which can be bought as a generic. This will work as well as or better than the Canasa, but will cost you on $10/month, or whatever your insurance plan has for generics.

If you use this medicine every day until all of the inflammation is gone, then you can start skipping days, tapering down to a frequency that keeps you healthy but doesn't interrupt your lifestyle too much. I think I used rectal meds like that for maybe 5 years. Ultimately I had spaced them out so far that I just stopped using it, and knock wood, I haven't had rectal inflammation since 2009 maybe? I don't even remember.

The biopsy your GI took during the scope should have given some information about the extent of the inflammation. It would be good to know how high up you have inflammation.
Posted 6/7/2014 12:26 PM (GMT 0)
Thanks for you reply kazbern, this next week I will consult my physician and get more specific answers to my results.

I have used the canasa 3 days straight and I don't feel any pressure at the moment.

Let me come back next week armed with better info, I appolligize for the lack of specific diagnostic results.
Posted 6/7/2014 3:09 PM (GMT 0)
I am curious to hear if your right quadrant pain has resolved itself. Perhaps your rectal issues had you constipated to the point you had trapped gas and harder stools.

It's encouraging your biopsies are normal, but I don't blame you for not wanting to accept without further investigation that the ulcerative proctitis was a fluke. This disease starts in different ways for different people. When I think back, I should have taken action when I noticed my tolerance of things changing. For me, most of this got started through two pregnancies that both ended in c-sections. I attributed most of what was happening to having babies and my body's need to recover. 8 years and an ER visit later...the truth came out. I wish I'd been as proactive as you are being. I don't have the urgency issues as many here experience. I'm the opposite. I have pancolitis and, when left unchecked, I lose my ability to go.
Posted 6/7/2014 6:26 PM (GMT 0)
Spartan4life, I have never had any type of constipation issues and my upper right quadrant pain has certainly not subsided.

Thanks for the encouragement that my proactive approach is the right path.
Posted 6/7/2014 7:11 PM (GMT 0)
I don't think the SCD diet is fit for a spartan such as yourself. You'd need a boatload of carbs to compensate for all that glycogen you are losing when doing that 300 workout. I honestly think your body would be in starvation mode (burning ketones) on the SCD.

Rice, potatoes, plantains and other safe starches are perhaps the best way to do this... Look up the Perfect Health Diet by the Jaminets if you are interested. It builds on the SCD diet, but the data is more up to date.

For muscle repair and regeneration, I'd look into protein shakes with glutamine. You mentioned muscle milk and that might work well. Goat dairy might be preferable if you can't handle cow. There's also goat whey protein. :)

Best.
Posted 6/30/2014 4:36 PM (GMT 0)
I want to apologize for the delay but I wanted actual results before wasting anyone's time.

The biopsies showed NO inflammatory bowel disease, no infection, just Chronic inflammation of the first part of the rectum at the anus.

So I don't know if that's good news, bad news, or no news. This disease is SO confusing.

I guess the fact that it's chronic inflammation and NOT IBD explains while i never had severe diarhea like most. The only thin I have ever had is rectal pressure of recent which stays under control while on CANASA, which I hate taking because it slows me down and I have to take fiber.

Any advice now?
Posted 6/30/2014 4:52 PM (GMT 0)
Hi, sorry youre not feeling well. I think its great youre taking a proactive approach with our health! I can recommend giving up gluten. I gave it up almost 4 years ago and at this point wouldnt consider going back. It helped out my other health issues-constantly feeling fatigued, especially after eating, and more-you dont even notice these things until you stop eating it!! It also helped end my first flare (before i knew what it was).
Giving up coffee is good too-i do when im sick, the rest of the time i enjoy it too. If you can give up sugar, give it a shot! Im not sure if that helped me but it sure made me realize how addicted i was (still kinda am :/ ) to it.
If you want to give up gluten, try it for 2-4 weeks strictly to see a difference. No wheat, barley, rye (or oats, sorry!). Read labels carefully! You dont even need to buy the expensive gf breads for now, just eat rice and corn tortillas as replacement while youre testing it out. Some people say its so hard but its not when you feel good about it.
I wish you the best :)
Posted 6/30/2014 4:54 PM (GMT 0)
Oops i am new to this forum and did not see that the above posts were from weeks ago. Sorry! Hope my post helps anyway
Posted 6/30/2014 5:55 PM (GMT 0)
Your fine, thank you.

I guess my question is how can you have chronic inflamation of the rectum and it not be IBD?
Posted 6/30/2014 6:01 PM (GMT 0)
Hi spartan,
This may not happen to you, but my first biopsies showed no IBD and they took me off sups. Started bleeding again and next scope biopsies showed UC. Hope that is not the case for you, but just wanted to share my story. That was 5 years ago.
B
Posted 6/30/2014 6:31 PM (GMT 0)
Spartan, chronic inflammation = inflammatory bowel disease. Just because they can't name it Crohn's or UC doesn't mean it's not an IBD.
Posted 6/30/2014 7:37 PM (GMT 0)
Thank you! That makes more sense to me.

I don't experience any bleeding OR diarhea, just pressure that feels like my butt is puckering up for a kiss lol. (Sorry but that's the truth, it's a pressure not an urgency)

The Canasa keeps the pressure gone, but if I use it like 7 days straight and try to taper off and skip days it comes back. So I'm thinking I will need to use it like everyday for at least a month before attempting a tapering off.
Posted 6/30/2014 8:05 PM (GMT 0)
Or maybe 6 months. rectal inflammation is stubborn.
Posted 6/30/2014 9:03 PM (GMT 0)

kazbern said...
Or maybe 6 months. rectal inflammation is stubborn.

Haha, thanks Kaz.

I like 1 month better, but I'll do what I gotta do.
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