newbie needing advice

Hi, I've been lurking here about a week. It's hard to tell my entire story because I've been sickly, with autoimmune problems my entire life but I've never had a UC flare until last Sept. 2013 (constant bloody diarrhea). I ate miso soup for a week and "cured" it. Then last January 2014 I ended up sleeping in the tub so I could be close to the toilet. Miso and yogurt couldn't cure it this time. A week of prednisone and I thought I was cured. wrong.

I ended up in the hospital from Mid Feb to Mid March - for 30 days. After the colonoscopy, on the first day, the GI specialist said he had never seen anyone's colon as bad as mine in 20 years. The pictures show the entire colon looking like it had been beaten with a mallet. He couldn't believe that I hadn't come in to the ER sooner. Well, I HAD actually been bleeding a little bit, daily, for 2 years but I ignored it, since it didn't hurt. The pain and constant bloody diarrhea didn't start until January but I thought I could "fix" it with diet and herbs because I've always taken care of myself that way. Anyway, in the hospital, I refused remicade and instead had the prednisone and a PICC line for IV feeding. (I had little understanding of what this disease is until I read this forum) The doc said he expected me to require emergency surgery in the first two weeks, but instead I got better. Score one for being in denial!!

But since I've been out of the hospital, I feel like I've gotten worse. I'm on 40 mg of Prednisone. It was tapered off for a while but I got so much worse that I asked for more Rx to get me through until tomorrow's appt with a new GI (had to move to a nearby city with my parents, since I can't take care of myself, so I needed all new doctors).

So here is my dilemma: I don't have diarrhea or blood anymore. I'm just swollen, in pain and can't poop or pass gas. I'm stuck. Slippery Elm helps. Caprylic acid seems to help. Magnesium malate seems to help. These slowly help move my bowels but not very much and I'm still swollen. The pain is mostly in the transverse colon area. Not really any problems near the rectum as far as I can feel it. But I'm not getting better.

These symptoms don't sound anything like what I'm reading everyone else describing with their flares. Rather than too much poop, I have too little. Considering that the prednisone makes me ravenous, this creates a lot of pressure and pain. It feels like an alien is going to pop out of my abdomen.

Has anyone else experienced this or know what it means? I want to be prepared tomorrow when I talk with the new GI. I'm sure he'll suggest one of the mesalamines. I have a moon face and all the other prednisone problems so they'll want me off that soon. I really just wish I could fix things with supplements like I've done before but it's not working this time. Or maybe it's just taking longer than I expected.

Also, I have lots of inflammation in my thighs and knees, so I can barely walk - I shuffle. Also got a blood clot in the hospital from the PICC line so I have to watch my INR levels. My PCP is mad at me for taking the boswellian/tumeric combo but I just felt like I had to try it. It's not really helping, though, I don't think...

I hope I'm not rambling too much. I find this disease confusing and don't know what's relevant sometimes, especially when I read how different everyone's experiences are to each other.

I'd just try to calm down and see what happens with the doc. You should have a more open mind though. Feeling like supplements and diet is going to cure you is not leaving your mind open to all treatments, including medical, and now that your alternative treatments didn't work and put you in the hospital your mind may be prejudiced against alternatives. As I said, you need to calm down, take a deep breath, see what happens with the doctor tomorrow and don't expect any treatment of any kind to just start working. Eating Miso soup for a week is not going to cure your UC and meds for a week aren't going to cure you either. You need to take baby steps in the right direction instead of haphazardly trying to find something to cure you in a week.

Sorry, but I am confused by this whole post. I will review in the am when I am fresh, but could you clarify a few things too? A PIC. line isn't for feeding, and some of your treatments are seem unusual to get in remission.. Glad if they helped, but .....
Give us a little more data on you past and present please.

Sheree,
I hadn't thought about an infection...
There is definitely lots of inflammation. I have a huge belly.

Liz,
I was really confused and in denial about my condition. I didn't know how close I was to death, I needed 2 units of blood. At first I even refused the CAT Scan and then also refused the colonoscopy. They had to convince me about everything. I can be the patient from hell...sometimes. Eventually, I came around to reason.

Later the doc said I couldn't have remicade without insurance anyway because I would have to come back in for regular infusions. If I skipped the follow up infusions, the remicade would lose its effectiveness and I'd lose that option for the future. At the time, I didn't know that there were so many other meds out there. Nobody told me. But anyway, NOW I have insurance.

I agree with you, constipation feels MUCH worse than diarrhea. Stricture or narrowing sounds awful, I hope I don't have that. Could coffee be causing this? Or the rice bread I'm eating? Rice and rice water does tend to slow down the bowel.

Katmom,
They had everything going into and out of the PICC line. There was a bag filled with white stuff called a TPN and that was what they fed me with for a couple of weeks or more, then I got clear liquids, then soft foods in the last week. They released me when my coumadin levels reached 2.0 on the INR. But I wouldn't really say I am in remission because I feel awful. Or does remission just mean no more blood in the stool? That happened about the 3rd week.

Gary,
yes, I'm starting to understand that this is going to be a long haul. Not sure which direction to take though. That's why I want to be better prepared tomorrow. I'm not at all prejudiced against alternative meds. I even got the docs to allow me to bring an acupuncturist into my hospital room! But now I'm more open to the possibility of using conventional meds too because I'm kinda scared about how my bowel is feeling. Thank you for the reminder, I'll try to calm down.

CoffeenCake, thanks for the reply. From what I understand, doctors don't think anything you eat is relevant to this disease. That's what my GI said anyway. They don't care about medical history except as it relates to the bowel.

Katmom,
my medical history would derail this thread because it would go off topic...
Suffice it to say, I was Gluten free for many many years and my eczema, varicose veins, acne, PMS...etc... all disappeared after a couple of years of GF, sugar free, mostly dairy free food along with lots of probiotics, vitamins and bowel cleansing. Then, in 2009, I had a huge upheaval in my life, moved, started being lax about my food because I felt sooooo healthy. Without reading the ingredient label, I began eating barbecued pork from the deli, twice a week, and began to get all my old eczema, canker sores, hayfever, problems back. This went on for 2 years but I didn't read the label to figure out that there was gluten in the barbecued pork until Jan 2012. By then I had been bleeding for most of those years. By then, many foods were causing problems because I tend to eat really spicy foods.

Since Jan 2012, I've tried to fix myself but haven't been very successful. I guess I could've tried harder with diet and supplements. The silver lining is that at least this flare caused me to have a better understanding of what my problem has been all these years.

Thanks for the welcome Madcat,
It turns out that my appointment is tomorrow afternoon. I'll report what the new GI doc has to say, after that.

Meanwhile, I added a supplement called ButyrAid. It's Calcium Magnesium Butyrate. Back in the 1990's my naturopath recommended it along with the Caprylic acid, but I never could tolerate the smell of it. This brand is less smelly and I've taken a few capsules. What I'm not sure is the timing and sequence of some of these supplements. Does anyone know if I should be taking the caprycin and butyraid together? I know that the caprycin is taken with meals.

Spartan,
your comment sounds very relevant, actually.
Almost all my WBC's are high or abnormal. The PCP doc said it was due to the prednisone, but maybe they are also a sign of infection.

I was put on Flagyl for about 2 weeks while in the hospital. (Need to get my records from them so I can remember everything that they did.)

I've always responded well to the caprylic acid or goldenseal root, when my skin starts to break out, so maybe I'm just prone to bad bacteria or candida in my gut and that might be my problem now.

The problem with being on Coumadin is that most herbal remedies are also blood thinners and it may cause too much blood thinning. Whether a particular herb affects the INR test is anybodies guess, so it's hard to measure. That's why I haven't been taking goldenseal root.

Maybe I'll ask for some more Flagyl just to see what happens? Or maybe ramp up the caprycin. Or get another ultra sound of my arms to see if my blood clots are gone and go off the Coumadin if they are.

So even though you took the Flagyl, and you were able to have bowel movements, you were still put on mesalamines? There is NOOOOO way I would wait for 3 days for a BM. Right now, one day is torture with the gas involved. I take slippery elm, which moves things and am considering the psyllium seed powder I just bought. May also ramp up the magnesium to get to diarrhea levels!

I don't recognize my body anymore.

Spartan,
turns out my new doc doesn't think I have any infection.
Like Katmom, he was also surprised by the course of my disease going from severe UC (bloody diarrhea every hour) to constipation just from taking prednisone and flagyl and 4 weeks on TPN. He suggested a stool softener and was also surprised when I told him that my stool is already bulky and soft. It's not a problem of the quality of stool, it's just a problem of getting any movement. I also mentioned that Ativan, an anti-anxiety med helped me feel better and sleep. That's when he said that it might be a clue.

He thinks my UC is now IBD. In other words, my colon just went rigid and doesn't have any (or much) movement. That actually makes sense to me. I used to take lots of magnesium malate for other reasons (it energizes cellular mitochondria and relieves muscle fatigue) and now I don't. So maybe that's related.

Either way, he still wanted me on an immunosuppressant and I said no. He suggested a sulfazine, and I asked for Asacol and he Rx'd something like that: Delzicol 400mg 3x daily.

Blood work was for CRP, Prometheus TPMT enzyme, sedimentation rate and protime.
Also referred me to rheumatology.

I'm curious what everyone thinks about the Rx, and about the possibility that my bowel has just "gone stiff".

No, this is what I got too-
https://www.healingwell.com/community/default.aspx?f=38&m=3061876
I've been awake like 3 days.... and now the thought that it's probably mega colon.
Can you just go to a hospital and ask them to run tests. I'm not in any pain but weird bubbling feeling outta place.

During this time period have you been lack of sleep. I try to go to sleep but there's this sensation in my head/chest that keeps waking me. And you're saying that it's IBD. Isn't a regular IBD less worse then the typical UC symptoms?
I have old predizone, I can't believe i didn't take it and forgot about it for some reason. Wonder if it's a year expired if it's worth the risk.

when is your follow up for your colonoscopy

Yes, UC is a IBD. But the doctor is telling him basically, he see's no ulcer's and the colon isn't inflammed(?)
So the doctor is pointing towards just his bowl being irritated by something making him inflammed, and wants a colonoscopy done.

That's a great question. I'm not sure.

I think the fastest thing you can do is to get going on the mesalamines (oral and rectal) and see how you feel in a week. At the end of the first week I noticed I was going again more consistently. By three weeks I was having a bowel movement every morning like clockwork. That was for me, of course. Now, notice I mentioned I'm on an immunusuppressor. The mesalamines helped me on a macroscopic level. They significantly reduced my swelling. I didn't have an issue with mucus, blood and ulcers either. I simply lost the ability to go. Once I was going again I assumed I was in remission. Biopsies from my follow-up colonoscopy, 4 months into taking the mesalamines, showed disease progression. I have pancolitis, but the right side was presenting as acute on the cellular level. At that colonoscopy, I was moving to chronic presentation...which means my entire colon has graduated to chronic. I was so surprised because I was feeling better and going daily with perfect fluffy s curves. My fecal calprotectin was close to normal, too. My GI was surprised, too, but said it happens. I needed the additional line of drugs to stop the progression. We'll see how that works. Right now we are trying to get me to the range of therapeutic benefit with a drug and dosage I can tolerate. So far, the only thing that has remained out of whack in my bloodwork is my platelet count. It was hovering around 900 and is now slightly elevated at 600. She's going to look at my platelet count when I reach remission and see if we can count on that as an easy indicator of disease state to avoid frequent colonoscopies.

I think when you get on the mesalamines you will notice less thin output. It's the swelling. I don't know that slippery elm addresses swelling. It helped me heal from the brutality once my colon finally got working again, but I don't think it did a thing for swelling. Not sure though.

I agree it's hard to comprehend why my pathology would be worse when I'm feeling better. In truth, I'm measuring 'better' by the look and frequency of my stool. When I'm being honest, I definitely 'feel' the full length of my colon. I'm aware of it when I lay on my stomach and it's uncomfortable if it gets overly full of stool. That's not normal no matter how little blood or mucus I'm seeing.

For what it's worth, I noticed yesterday afternoon I wasn't feeling my colon. I feel it today. Not sure why. I am encouraged I didn't feel it for a spell yesterday, though. Maybe these new drugs are getting a handle on the situation? I do know my hips and knees have improved and I'm not getting the mouth blisters I'd had in the past. When I think of all of the times in the past I've had those darn things...ugh. Who could guess all of that kind of activity could stem from an angry colon?