UC and all its little friends

So I was diagnosed in 2010 (proctitis). I have now been upgraded (march of 2013) to left sided colitis. I also was put on Hydrocortizon enemas and Delzical (oral) and Canasa (used every other day - rectal suppository). Well about May, I developed what I thought was a perianal abcess, which I went to hospital and was told, nope, not an abcess, who knows. Went home. So much pain. I later developed a fistula, that now leaks (my guess is from the abcess). The lump of the "abcess" is still there, however it is about a lima bean size. The fistual hole is about the size of a thin pencil. Joy. I then started getting lumps all over my legs, super super painful lumps. Did I mention that the steriod enemas caused me to have bad insomnia. Which was just swell because my work was super inflexible. I applied for FMLA, was approved and was allowed to come in an hour later each morning, woo hoo. Now I have these super painful nodes on legs. I self diagnosed them as Erythema nodosum. Which my doctor said, they were nothing. So did the ER docs. Apparently, everything wrong with me is nothing and I am told it is just my colitis. Strangely, my colitis didn't cause any symptoms (other than the usual blood stools and more frequent bathroom breaks, and a bit of urgency). No abdominal pain etc etc.

My main cause of discomfort was these nodes on my legs (had a hard time walking), joint pain all over (like a severe fever), and pain in my tailbone. When I asked the doctor about pain in my tailbone and that I felt a lump, I was told that was just my bone and it was nothing (ER doc). Well here I am later - 12 months and I told my doc about my thought on erythema nodosum (she had never heard of it and looked it up adn said yea I think that fits, have a nice day sorta response). My nodes are finally clearing up. BUTT (lol) I now have a huge huge painful lump on my tailbone. Now it could be a cyst (that tailbone cyst I can't remember the name of) OR my erthyema nodosum (less frequent, but does happen on buttocks). I can't sit at all, bending over is tough. And about half way through my day, fever spikes and I feel like every joint in my body has arthritis. (Fingers swell and are super stiff it is hard to type). Btw I am 30F, used to be active but finding it hard with all of colitis's little friends.

I have not been taking any meds for my colitis (I quit my job back in Oct due to feeling crappy and them discriminating and not getting promotions or even lateral job moves because of FMLA (inside boss told me that was why in the rumor mill, but couldn't prove it for me). I have leftover enemas, but really really don't want to use them as my ass is a mess (fistula, abcess, this new lump near tailbone) and I am constantly trying to decide what to treat over the next thing. The ONLY thing that takes the pain down a notch is ibuprofen, which we all know is a no-no. I tried percoccet and others and not even a dent in the pain. I have a new job, but am a contract to hire so have 60 days before I get hired and have benefits (I have medical now, but don't want to spend money on visits I don't have too and waste money on starting over on deductible in 60 days, plus can't really take time off as I'm new).

My colitis is getting worse (frequent trips to bathroom, more and more blood- no abdominal pain at least) - I was anemic before (Iron lvl was 9) and I am bed ridden as soon as I get home(so much pain in joints, low energy, etc) and can only get through the day because I take ibuprofen. I am at a loss. I feel so lost and depressed anymore because I can't seem to get anything under control. I just want my butt to heal and not be in pain so I can treat the colitis. Every time I ask a doctor anything I just get brushed off like "oh its just the colitis and its normal" ***, no its not.

I've tried altering diet to help with colitis and its slow and working somewhat, but then I eat the wrong thing and bam, back to issues, but I know it probably can't just be fixed with just that right now, I'm too far down the rabbit hole and probably need meds to help fix it, then maybe diet can support it for that time.

I take baths with epsom salt and just am out of ideas of how to manage my pain without killing my system with ibuprofen. Any suggestions, words of wisdom or just comfort you can provide will be greatly appreciated. I cry every day now because of all this. I have forgotten what healthy feels like and that is a terrifying/trapping feeling.

Let the past go and start today by:

1)Find a good GI you like and get some meds. It's not smart to delay medical help because of deductible. Pay off the doctor bill month by month.
2)Do research here and go in with a checklist of the med(s) you want to start with. Don't depend on the GI to work miracles. Get more rectal meds and USE THEM. Don't just get pain meds, get meds to heal what is causing the pain.

Too expensive you say? Isn't your health the most important thing?

You are right that diet takes time and miracles won't happen overnight but diet healed my gut (in combo with meds and several other things). So remove fiber today for a start. It's something that will let your gut heal a bit. In 2 weeks try removing something else you know is a problem (alcohol? gluten? dairy?). Step by step. Help yourself in ways that you can.

Pain is how your gut tells you it has a problem. Fix the problem, don't just dull the pain.

Best wishes.

garylouisville said...
You shouldn't be taking Ibuprofen - not even one.

Good catch Gary!

The ibuprofen acts in a similar manner to the other NSAIDs that we take (mesalamine for example) and these two can have an interactions and seriously damage your liver and kidneys. I believe people with UC are supposed to take Tylenol for pain? Someone correct me if Im wrong

You can get assistance with your meds if you need it. Most UC meds have assistance programs or at least savings cards that are helpful. If you qualify, you may even get free meds. You have to talk to the dr's office about how to apply for them. You may have to change meds until you find one that you can get cheaper. Another suggestion is ask your dr's office for samples. They are usually happy to give them to you so that you'll take your meds.

I am also in agreement with everyone else who had posted here. Find a different dr. You need one who will listen to you and try to diagnose all of your issues. They are out there. Just keep trying.

And get off the Advil! I know how tempting it is to take it because it is effective, but it's making your UC symptoms much worse. There are prescription pain meds that are available that are not narcotics. Ask your dr for suggestions.

Tramadol is a synthetic drug that bonds with the same pain receptors in the brain as opiates. It has a very low propensity for dependence and is considered relatively safe. I take it as a backstop drug if my Tylenol and Mobic (yes, I know that's an NSAID but I don't walk without it) don't make the pain tolerable. (All taken for joint and connective tissue pain.) Tramadol works very well for me.