the proctitis that wont go away

Hi,
I am writing this in hopes it will be theraputic and also may even bring light to a new avenue of treatment. First, I should let you know that I have been dealing with UC since I was 6 (now I'm 27). So, 3 and a half years ago I started with proctitis. In the beginning I would not go at all for 7-9 days then I would have a 4 hour blow out where my body would purge stool. At the time my father was fighting stage 4 colon cancer, I was finishing my accounting degree at a university, starting a lawn business, and maintaining the property. The days did not have enough hours in the day. My G.I. thought it was all stress related. I remember my rectum was so bad sitting in class I would have to constantly hold stool back. Thanksgiving 2013 after my dad died, I went on a long downward spiral. Flash forward to now and I don't seem to be as bad but I don't seem to be a whole lot better, though progress feels like it has been made. Some days are better than others. That agonizing feeling I have to keep going won't seem to quit and when I do I have everything from constipation to very loose stool usually as skinny as my pinky finger leaving me feeling backed up the remainder of the day. Let me tell you what treatments I have tried prednisone (multiple times), cimzia, remicade, humira, hydrocortisone suppositors, canasa suppositors, hydrocortisone enemas, mesalmine enemas, flagyl (standalone), and now a triple antibiotic therapy I found from the mayo clinic consisting of flagyl, ammoxicilon, and tretracycline. I have also been bounced back and forth between my G.I. and a colon rectal surgeon and both don't seem to know how to attack this as I have shown little to no improvement with each of the mentioned treatments. This disease is really holding my life back now as I can't really even commit to working not knowing how my days will go. One day I'll be decent and the next I will feel like death and cannot stray far from the bathroom. I am in hopes to find someone out there who has resitant UC or proctitis that have found an "outside the box" solution! Sorry for the rant but I feel better getting this out there.

RX meds never worked for my UC except for mesalamine enemas. My original DX was U Proctitis but became left-sided UC.

So have you tried:
diet modification
probiotics (VSL#3 especially)
curcumin supplements (95% quality)

Those are the top 3 things that got me to remission but as mentioned earlier other people have used other supplements/treatments successfully. Not overnight, it took me years to find the right combination but even incremental successes were celebrated.

Yes it might be helpful to talk to a surgeon but you owe it to yourself to see if other non-traditional treatments might work for you.

I have tried going to a surgeon and he says he wont touch me because I am too young to risk going into a bag so he bounces me back to my GI. VSL makes me vomit for hours and I cannot even think about that stuff without gagging now. I am eating blander at the moment but don't notice any difference with food. Once in a blue moon I will have some fast food and the next day I notice I felt better actually. Also, having some ice cream at night made me go easier and better the next day. I do take culturelle every day and also added glucosamine on the advice of some people here and doing my own research. I believe I will talk to my doctor about Entyvio next week.

You should try going to a top colorectal surgeon. I've never heard of someone getting turned away because of age. We have had parents here with children, and they had surgery. Try any medical options you have first but go on a consultation if you want to.

My symptoms vary each day. Now I am dealing with very loose unformed stool. Last night I tried a mesalamine enema and today I noticed I feel itchy and soothed down there. Yesterday I felt backed up all day and constipated. This is how it is for me. One day I can't go and the next I'm so loose I feel queasy and seasick. That could be the antibiotics though. The rest of my disease is inactive and everything is just in the rectum. I've been scoped several times in the last two years. The surgeon said if we can clear up this inflamed rectum I will be in full remission again. I tried the whole diet thing, not hardcore but I ate bland small meals multiple times a day and nothing changed. My doctor isn't big on diet changes. He hasn't seen many good results with them. He just tells me to eat within my means.

Uc inflammation always starts at the rectum, and when we're healing the rectum is very often the very last to heal (which truly sucks because rectal inflammation causes urgency and tenesmus; the frequent feeling that you need to empty). Rectal inflammation is extremely stubborn. Have you tried hitting that inflammation with steroids (suppository or enema) and meslamine (enema or suppository)? Often, best results involve doing both steroid and meslamine in rectal form concurrently (one type at night, the other in the morning).

You need a new GI-first he tells you it is stress related and then doesn't know what to do with you? Is he/she an IBD expert or general GI? Consider a university location where they see your condition frequently.
You have tried most that medicine has to offer. Entyvio is worth a try as are diet changes. Rule out any allergies.
When is the last time you were scoped? The disease they see doesn't always correlate to the symptoms you feel. My daughter was scoped once in college by a doc who listed it as "mild proctitis"- she was going 20 times per day and had her surgery within 6 months of that. Her regular GI knew how stubborn the rectum can be in healing and didn't hold out hope that it would regulate in short order. She needed the surgery before she got too much sicker- and had her colon out on her 21st birthday. You are young, but not too young to understand your options. Best to you.

katmom, I am sorry to read that about your daughter. I know what it is like going through but not how hard it must be as a parent to watch a child suffer.

Bloom93, I do eat a lot of potatoes (normally every dinner minimum) but I will research the starch diet further as that seems interesting to me and its something I can try now. Thank you!

Exactly what meds are you currently taking? It would be helpful if you create a signature that will list them every time you post. You can make a signature by clicking on the My Profile tab at the top left right beside the Log Off button (at least that's where it's at on my PC).

I have made a signature with my current and failed meds to make it much easier. Sorry I didn't do this before.

Also, I have noticed since doing the mesalamine enemas at night my urgency issues seem to have disappeared. I am still going on the skinny side and have to push to pass stool but I am feeling more comfortable. I will see my doctor this wednesday and will still discuss entyvio with him.

Lay off the grilled cheeses and drink two glasses of metamucil a day

Taking a candida cleanse and then eating grilled cheeses are creating the war in your stomach. Maybe try chicken soup- plain with just chicken and maybe some soft carrots. See how you do. I know the queasy feeling you're talking about and it sucks- try some ginger tea. Hope you feel better.