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Can anyone with Chrohns disease help? Please

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Crohn's Disease
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Posted 4/9/2017 5:05 PM (GMT 0)
I made a post before but since I just had surgery I wish to update my experience. I was diagnosed with an anal abscess and it was lanced and drained on New Years Eve, so I stayed home for several days and there was a lot of draining and blood in my underwear, I wasn't experiencing anymore pain after about 4 days. I was referred to a general surgeon and I was told that I was healing properly, this was in late January but I was told to come back in 30 days.
I didn't get back into a surgeons office until March I believe and I was told it looks like I developed a fistulant, so I was told that I would need surgery. So on April 6th I had a fistuolotamy (think I spelled that correctly) and after the operation I woke up in a lot of pain! So I laid there for about 15 minutes and the doctors said for me to take over the counter pills such as Ibuprofen and Tylenol, they didn't give me any prescribed medication. Why? I don't know. Maybe because I'm 17 but I was given medication after I was lanced back on New Year's Eve, but anyway.
I went straight home and laid down, I took 2 tyenols and 3 hours later I took ibuprofen, didn't help much but it relieved some pain. The day after the OP I called the hospital to see if I could get a prescription because of so much pain, they refused but told me to take 3 ibuprofens instead of 2, so i took pills every 3 hours and I was also taking sitz baths, these helped. But I was still in a lot of pain at some points. On Saturday, 2 days after the OP i felt the urge to poop, but I realized I was constipated.. yikes.
So I ended up pooping and boy was I hurting, but it was bright red blood so I think that's a good thing, I jumped straight in the bathtub and sat there for 20 minutes, didn't get much relief. I went and laid down and after about 3 hours, the pain wasn't as bad. The next morning (today, which is day 3) I took my first shower instead of bathing, sooo much pain from standing but I managed, I then went and took a few pills and laid down. I have yet to eat anything, but as I'm laying here currently the pain is way more bareable.
Has anyone else went through this? I just want to know how long will I be in lots of pain, I wake up several times at night just to take a few pills. Could it be Chrohns ? The doctor told me that it wasn't but I just have my doubts. I also have a seton, I have to go in 2-3 weeks to get it tightened, will this hurt? Please help
Posted 4/10/2017 1:10 AM (GMT 0)
So sorry you're going through such a horrendous experience at such a young age. I wouldn't jump to any conclusions that you would have Crohn's. Many people develop external abscesses. It's probably more rare to have one that has a fistula attatched to it, but still, unless you've been scoped with biopsies, then Crohn's would be doubtful.

The bigger concern is the healing time, and your current progress. When do you see the surgeon or your GP again? You should have regular follow-ups on your healing time.

If you're in extreme pain that's not getting better, then it's time to call and get checked out. Do you have a family member that can advocate for you? You should get your Mom or Dad to call.

Hope you're feeling better soon. Don't wait too long if things aren't improving.
Posted 4/10/2017 1:31 AM (GMT 0)
Thank you for your concern, it's been real rough especially since the post OP is way more painful than the fistula, I visit the surgeon in 2-3 weeks, but I'll take your advice and give them a call to see if I can get in the office sooner than later. I'm taking it day by day and hoping for the best
Posted 4/10/2017 1:38 AM (GMT 0)
I'm a bit concerned that your surgeon is the one to say it's not Crohn's. I would make sure to get a referral to a GI and talk to them. Also, is this a colo-rectal surgeon or a regular surgeon? And I'm sorry your surgeon is kind of a jerk. The anus has one of the highest concentration of nerve endings in the body, and if that's disturbed, the pain can be excruciating. I've had two c-sections without pain meds after, and I've toughed out pancreatitis for like a month. But the most awful pain I ever had was an attempted plug surgery on my recto-vaginal fistula. I went home and when the IV pain meds wore off, I was in so much pain I had to go back and be readmitted and get IV dilaudid, 3 mg every two hours, and still had pain at like a 7 for a few days.
Posted 4/10/2017 2:16 AM (GMT 0)
Sadly I believe he was a general surgeon, but I'll double check to be sure and get back to you. Why didn't you get the pain meds after the operations? Good to see someone kind of understands what I'm going through
Posted 4/10/2017 2:20 PM (GMT 0)
Update. This morning around 4 I felt weird, I went to the restroom to pee and felt the urge to throw up, I tried but nothing came out but spit. As of 9 AM my stomach is hurting and my anal area is hurting bad of course. Ready for all this to be over, telling myself it could always be worse so I'm trying to think positive but I feel myself getting depressed, seems like the sitz baths aren't helping as much either. Scared to eat because I feel like I'll just throw it up. I called the hospital and left a voicemail, they said they would get back to me within 1 business day so I'll try to ride it out. Might just go to the ER though, trying to keep my head up.
Posted 4/10/2017 4:11 PM (GMT 0)
Please keep on chasing this up. You need a referral to a GI. If the pain gets unbearable, go to ER.

I hope this ends for you soon.
Posted 4/10/2017 9:08 PM (GMT 0)
I second NCOT's post, but think you should get to the ER asap!! Even if it's for reassurance, just go. Once again, do you have family or friends you could rely on?
Posted 4/10/2017 11:01 PM (GMT 0)
I really think you need to go to the ER as well. And you need a colo-rectal surgeon ASAP. Regular surgeons do NOT know how to work with fistulae. My regular surgeon once told me he wouldn't touch me with a 10 foot pole and that if I had a regular surgeon tell me they could handle a fistula or even an abscess, I should run away screaming.

One of my problems with Crohn's is that I don't absorb anything at all. So any oral pain meds, even extremely high doses, don't do anything. No loopiness, no pain relief, just...nothing. So all of my pain is suck it up or go to the hospital. I toughed out my c-sections and many other surgeries.
Posted 4/11/2017 8:45 AM (GMT 0)
I told my dad about the pain and he took me to the ER, there's not too much they can do about pain. On the bright side it's not infected and it's healing how it's supposed to, I had several doctors/surgeons look at it. I was given tramadol and stool softeners, however I realize that aleve works great. It's going to make the days more bearable, I'll have a follow up in a few days and I'll continue to soak daily. Feeling better already, until the pills wear off that is. I have to learn to cope with the pain, it's a very sensitive area as you know so there will be pain. Thanks for your concerns, each day from here on out should get better
Posted 4/14/2017 2:11 AM (GMT 0)
Hi Rustic

I had Crohn's most of my life and had an emergency surgery for a blockage at age 15. I had several peri-anal fistula/abscesses after I had children. I was about to have my rectum removed and a colostomy. That is when I found the Specific carbohydrate Diet. Everything healed within 3 months. 17 years later I am still well and went off all meds three months into the diet. The diet has worked for thousands.
If you want to read more about it go to:
www.breakingtheviciouscyle.info
Or put Specific Carbohydrate Diet into a search engine.
You can also email me if you would like [email protected]
I feel for you, it is awful.
Katie
Posted 4/14/2017 1:16 PM (GMT 0)
My heart breaks for you. 17 is so young to deal with such horrendous pain. SCD is good. It will take a lots of support from your family & willpower on your side but it's worth a 3 months try. I'd recommend not starting until you have read everything & then do the 3 day intro plan.

Keep bugging people for help & don't settle for inadequate care. I'm living proof these things get out of control fast.

Good luck. We're here to support you.
Posted 4/15/2017 1:47 PM (GMT 0)
Thank you everyone for your concern, I will try the tips you gave me. I'm hoping I don't have anymore problems with this, but I'm praying I'll be fine. It's 9 days post OP and I'm still kind of sore, so I'm still doing sits baths daily but the pain is much more manageable. I'm still getting lots of bed rest, thanks 🙏🏽 keep me in your prayers I'd appreciate it
Posted 4/15/2017 3:01 PM (GMT 0)
Keep in mind that both ibuprofen and Aleve can cause stomach upset, stomach pain, nausea, etc, particularly if you've suddenly started taking more than you normally do. Be sure to only take those meds with some food on your stomach. If you tolerate dairy, that is a great thing to take those meds with to reduce possibility of stomach upset. Same with Tramadol - be sure to take it with food.
Posted 4/16/2017 2:56 PM (GMT 0)
My momma said the same thing, sometimes I don't feel the urge to eat but ill at least eat a granola bar. Woke up this morning with a pain on the opposite side of the fistula that I had, praying it's not an abscess but the area isn't swole it feels more like a muscle pain. Anyone had this problem?
Posted 4/16/2017 11:40 PM (GMT 0)
It could be muscle pain from compensating. This is common with leg/hip areas. When you "baby" one side (don't sit on it, limp a bit, etc.), the other side starts hurting because it's taking a beating for both sides.
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