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Hi- new but not so new

Hi all,

Well I've been lurking your site for aBout a month now. I finally broke down and joined a couple weeks ago and this is my first post. I was diagnosed with CD about two years ago. Mild the doc said. At the first flare up 2 years ago I eventually went from 237 to 180 lbs in 4 months. After that I was on the mends for a couple years and started another flare up a couple months ago. It seems my crohns likes to mainly manifest itself in my rectum resulting in fissures and hemorrhoids. I mean yes, still the staunch diarrhea at the beginning, but then massive pain in "the last mile" for months. I read Alot, goodness do I, and find some encouragement in finding out what has worked for others. Matter of fact sitting in the tub right now writing this on my iPhone. :)

So going through a flare up for the last 2 months now. Internal fissures and hemorrhoids my bane right now. Prednisone, pentasa and Rectiv. No real end in sight. :(. It's quite depressing As many of you have said. Oh yeah, and Percocet and SCD for the last three weeks. Learned the hard way about not taking NSAIDs :). That caused some pretty scary bloody stool.

Anyway, thanks for listening. Sometimes I wish I could turn into a fish as sitting in the tub is quite soothing. Off to work at 0500.

Cheers

Will
 
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Hi Will

I'm sorry that your have been having some rough times, it really is a pain :hallo3:. I am glad though that you have joined the forum, I joined a few months back and it has been great, lots of info but best of all lots of support from wonderful people. You have come to the right place to find what you need.

It looks like you're on plenty of meds, I have a large box that mine stay in, sometimes I think if you shook me after I have taken them I would rattle :) I'm glad at least something (the tub) soothes you, have you tried a heat pad that folks on here talk about sitting on? I believe they can give good relief. I use heat bags for my tum and they def ease my ache. :hang: I know it's hard going through another flare but hopefully things will improve soon and you will go back to remission. Best wishes.:ghug:
 
Thanks for the Words of encouragement Lynda! I have not tried the heating pad yet but it's on my shopping list :).
 

Angrybird

Moderator
Location
Hertfordshire
Hello Will and :welcome: to the forum.

How long have you been on the Pred and have you been put on a calcium supplement for this? When are you next due to see your doc? Have they mentioned anything about going onto another maintenance med or was the Pentesa added during this recent flare?

There is a lot of helpful info and support here so do have a good look around :)

AB
xx
 
Thx AB, yeah I'm taking a calcium sup on my own. Prednisone for about a month now. I just talked to my again and she wants to do an MRI to rule out fistula. Or rule in :). Been taking pentasa daily 4 pills since last flare but doc upped to 8 on start of recent flare.

Had to break down and buy a cane today to help me get around :(
 

Angrybird

Moderator
Location
Hertfordshire
It seems to me that if you have flared on the Pentesa then this is not strong enough to keep the tum settled for you- especially if you do end up having a fistula. It happens a lot with the folks here that this med does not do the trick as it is usually used for very mild cases and was actually designed to treat ulcerative colitis not crohn's. When will you next see your doc to discuss the plan going forward? What type of foods are you eating at the moment?
 
Luckily I've got a patient portal where I am able to stay in email contact with my doc. As a matter of fact, after my last post I had a bowel movement and while cleaning up I massaged what I thought was a hemorrhoid and what do you know, i started to seap from my rear! Believing immediately I had this fistula thing my doc was telling me about, I wrote her and within minutes I was was on antibiotics :). I'm feeling encouraged now having something to hang my hat on as to why I have pain all the time. Ironically, after it drained, I was able to walk better as well. I had just two hours prior bought a cane because I was having such difficulty walking. This massage thing actually started from a tennis ball massage therapy I read here on this forum over the weekend.

You asked about diet! I've been following a strict SCD diet for the last 4 weeks. And I'll see my doc again after she gets my MRI results. I'm hoping for no surgery for the fistulas but will do what I gotta.
 
Hey roadie welcome to the forum...i'm sorry your having such a rough time with crohns..
I hope the meds kick in and the MRI results come in soon..

Hope the walking improves a but..and defenitly try the heating pad....it doesnt take away the pain completly but it does offer some sign of relief..

Xx

Yanet
 
Update: what a day. I went for my MRI only to find out my clinic didn't fill out the order form correctly. So where I scheduled the MRI, they don't do the kind my doc needs...enterography! One sick day wasted, and now have to do again at another hospital tomorrow.

some advice if you don't mind:

1. Will Rectiv 0.4% help fistulas? My doc prescribed to me last week but it became clear to us (me and doc) yesterday that I have a fistula not a fissure. I didn't take yesterday or today. very bad side effects.

2. I'm hitting the percocet pretty hard, but doesn't seem to take the edge off the pain anymore. think I'm up to 6-8 * 5-325's now. :-(. THought that would be the pain killer of choice...

3. seems i get relief when i lay on my back and arch, it puts pressure on my bum, and causes the fistula to drain. The relief is so nice, but am I making matters worse? All that drains is clear to white pus.

4. Taking 500 mg 3Xdaily of metronidazole, started yesterday...was hoping for less pus by now.
 

Artisan105

Yondaime
Update: what a day. I went for my MRI only to find out my clinic didn't fill out the order form correctly. So where I scheduled the MRI, they don't do the kind my doc needs...enterography! One sick day wasted, and now have to do again at another hospital tomorrow.

some advice if you don't mind:

1. Will Rectiv 0.4% help fistulas? My doc prescribed to me last week but it became clear to us (me and doc) yesterday that I have a fistula not a fissure. I didn't take yesterday or today. very bad side effects.

2. I'm hitting the percocet pretty hard, but doesn't seem to take the edge off the pain anymore. think I'm up to 6-8 * 5-325's now. :-(. THought that would be the pain killer of choice...

3. seems i get relief when i lay on my back and arch, it puts pressure on my bum, and causes the fistula to drain. The relief is so nice, but am I making matters worse? All that drains is clear to white pus.

4. Taking 500 mg 3Xdaily of metronidazole, started yesterday...was hoping for less pus by now.
Your doctor doesn't want to do any surgery yet to fix the fistula huh? He is hoping to use medicine and hope it will heal on its own? Try not to take more than 6 percocets per day. The percocets have tylenol in them... that is the 325 from the prescription. Too much will cause your liver to be damaged. Ask your doctor for either tylenol free percocets called oxycodone or percidone or roxidone... I don't remember. If the pain medicine is not working ask him to refer you to a pain specialist. Most doctors don't like to prescribe pain medicine, especially anything over a percocet they refer to a pain specialist. What kind of pain do you have?

So you have a colostomy bag right? To drain the puss or fecal matter that is draining out of the fistula hole? Are you eating properly? Or are you on a TPN? It is a food tube they give you so you don't eat while you heal that area of the fistula, because they don't want food to constantly touch or move around that area that needs to be healed.

Anyways... hang in there. I know how this feels. It sucks so bad -_- I dislike fistulas, hernias, open-wound healings, surgeries, steroids, colostomy bags, etc etc...

Praying for you :)
 
Hey cool thanks! No bag, or surgery yet on fistula. It just seems to drain so obviously openi guess. MRI tomorrow to find out exactly what's going on
 
Good luck today hope it turns out better than yesterday. I'm sorry I have no experience of fistulas but there will be folks round here that will be able to help. Take care.
 
So MRI DONE! Doc says its an abscess and should be drained ASAP. I've got a consult with a colorectal surgeon in the morning. Praying for some relief! Is this a better diagnosis than a fistula as far as long term healing?
 
Hope it goes well today......relief hopefully on it's way to you :) Don't know the answer to your question, if you don't get the answer on this thread then post the question as a new thread, you may get more of a response , best wishes.
 
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