Does living with UC/UP ever get any better?

Hello All. I have lurked here long enough, figured I would join in. I apologize for the lengthy post. Please bear with me.

I was diagnosed with UP in Aug or Sept of 16. It started on a vacation where I ate badly and at some shady places. Shortly before that I noticed some tenderness down there and itching going on. I would try to address it but it made the skin down there tender and bleed. On said vacation I got a bit constipated (Probably from the food and the whole tray of Rice Krispy's I ate) and mega itchy. So I took care of it and I thought I had maybe cut myself during the process. I started to see some Mucus and a little blood about 5 days later while still on vacation. I also had a severe anxiety spike during that time also.

Over the next few months the mucus and blood increased, my GI Doc refused to do a scope and just said it was a "Crack". I got a new Doctor that rushed me in for a scope. He said my Colon was perfect but the rectum had some inflammation. He started me on Rowasa which worked well for 2 weeks and then it came back worse. (I have a theory on why this happened) So after the initial treatment I had a visit with him. The biopsy results came back and he said I didn't have UC. That it could be Acute Self Limited Colitis or Chrones, but he very much doubted Chrones. After the month of Rowasa was over I was off of it for a few weeks and then had a flex sig. During the flex sig he gave me the grand tour. He said it was pretty much the same and hasn't spread and that I had some internal Hemorrhoids. He also took some more biopsies. Back onto the Rowasa and added Apriso.

Biopsy results came back and he said I had UC/UP and that the results were the same as the first time. Where I was confused was the first time he said I didn't have it. There was a Rare Crypt Abscess detected so I assume UC for sure. It goes right up to the start of the Sigmoid and stops. Been on the Apriso since. I came off the Rowasa and things were fairly normal. Saw mucus now and then but it was not free floating like before and was just a little on the stool. Had another small flare that I squashed with a week of Rowasa. Figured out that most of my cramping was from taking Stool Softeners for 6 months. Stopped those and bam everything was normal again, lived a good life for 2 weeks.

I also suffered during the few weeks with Anus inflammation and itching that I took care of with some creams and TLC. I had also stopped using Wet Wipes which I was on for 6 months too, no normal toilet paper came near it and I was starting to react from the wipes so I went off of them. I feel most of my issues stem from irritation of the Anus (My teenage level of humor makes me giggle when I type this, I am 32 =). For months before this I would say I was a "Rough Wiper" and would make it bleed because I was anal (Pun) about it being spotless.

Follow up was last Monday were I proclaimed I was doing "Great". He gave me a box of Eneteragam if I wanted to try it and sent me on my way. That night my wife made a great dinner with what I assumed was a lot of Ruffage. Fish and Veggies. Well over the next week I started to notice some things not digesting and coming back out very very visible in the stool. I figured it was irritating it. The stools started to look a little mucusy and smaller less bulky. I started the Enema again and it didn't go in so smooth and I got a tiny bit of blood the next morning, same for the following night. Well last night I didn't bother and figured it was just irritating the area. This morning I had the free floating mucus with the initial burst of wind that I didn't miss from the full flare. Yesterday I also stated some Digestive Enzymes but I don't feel they are related.

So here I am, at a cross road of medication to try. Do I try this Enteragam, Cortifoam or stick with Rowasa?

It seems my bum is very sensitive to things and reacts quickly both to meds and irritants. I pray this doesn't get worse but I am afraid I am in for the long haul. What frustrates me is this all started after a two year stint of getting back into shape, losing 60lbs and 16 inches. I feel there is some imbalance in my body from doing that, I don't know what it is or where to start. I don't really have much of a support system on this so it is trial and error.

PS: I am tired of looking at poop.

Enteragam is for IBS-D (diarrhea) so maybe it will help. I've never used it but sounds interesting.
Some people use both steroid foam and Rowasa enema, perhaps you can alternate them.
You won't want to use the Cortifoam long-term, it can make your rectal surface area thinner as steroids do to skin but the Rowasa is a good long-term product to use.

Try removing heavy fiber from your diet for a week or 2 and see if things get better while doing all of the above.
When you find a routine that your gut is happy with things will go better.
Try adding a probiotic, that can help too. Go slow and not too much all at once or gas can happen.

DamageInc said...
What do you suggest as far as Probiotics? I was on some for a while and it did give me wicked bloating but that was during the height of my flare.

My GI said even though I don't have D it could still help and I should give it a shot.

Here is a thread on different types probiotics: https://www.healingwell.com/community/default.aspx?f=38&m=3776911

Only 1-2% of people with UC have severe disease. Many people will have years of remission. My illness was more acute the first few years and then I had a very long stretch of remission. I'm coming out of a flare right now, but I knew how to manage it more effectively.

Trying diets/food journal, probiotics, supplements seems to help many people.

So get this. I fasted yesterday and then started taking the enzymes. Took 8 so far from last night to this afternoon around lunch time. Went to the bathroom when I got home and a ton of what looks like Worms came out. I looked up the symptoms of Parasites and they match a lot of what I have. One of the things they suggest is taking Digestive Enzymes, which I started last night. I had seen these things since I started having bowel issues. Only one at a time though and with a bit of time between them. Today though I count at least 50 both small and fairly large.

I took some pics but I totally kicked myself that I didn't snatch some. I am repeating the process of a fast and digestive enzymes today. I read online that digestive enzymes make it hard for them to live. Oddly enough this morning I don't feel the crazy urge to hit the bathroom right when I got to work. Took 2 pills last night and just took 2 more. I will be collecting them and calling the doctor today.

I fasted for 27 hours and broke it Monday. Been normal ever since except the surprise. Today I feel normal. Call is in to the Doctor. All of my issues started on Vacation, I wonder if I ate something that was contaminated.

When I fast I usually either do just water. Most I have done was 40 hours. I don't let it go often but I haven't really fasted since I got these issues.

Post Edited (DamageInc) : 3/1/2017 7:40:18 AM (GMT-7)