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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Been a long time since I've been on crohn's forum! + Question



07-03-2016, 08:14 PM   #1
KWalker
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Been a long time since I've been on crohn's forum! + Question

Hey everyone,

It has been a long time since I've been on crohn's forum. For a while I was doing really well and was able to really get away from the computer and be active/always doing something.

For those of you that remember me, a quick update- I recently got married to the amazing woman who has stuck by me and always been supportive with my crohns, and my wife and I are expecting our first baby!

Regarding my crohn's, some of you may remember how many problems I was having with my abscesses. I had surgery in May 2015 where they finally placed two setons (elastic, non-cutting), which I still have today. (We'll get to that later). I have finally found relief and am finally no longer complaining about abscess pain. I am no longer on the SCD diet because although it helped a lot of my problems, it was extremely restrictive, expensive, and I missed a lot of the foods I couldn't have anymore. I decided to go back to the medication route and I was started on 100mg Simponi shortly thereafter, however I did not notice any difference so I was bumped up to 200mg. I still take my psyllium and I really notice the difference when I miss a day. I still haven't been able to take it with anything other than juice though because the taste of the psyllium is too much.

I'd say for the most part I've been doing fairly well. I think when I left the site I weighed around 150lbs and I now fluctuate between 170-180. I reached 200lbs for a short while but I was eating like a horse to achieve that and thought it might be a bit much- and I think the Simponi is wearing off. I can go about 3 weeks with it but then it quickly wears off.

Now, about my question. As stated, I now have two setons in place. One side is doing really well, and the other side completely rips my skin. If I do any walking (taking dogs for walk, walking around mall, too much walking at work) I get so much blood. My wife didn't believe the extent of it until I showed her. There are two problems with this seton. The knot has shifted internally and now each end have broke through the skin and now stick out (ouch!), and the seton has also rotated sideways, so although it is rubbery, it is starting to lance through my skin and may eventually create another incision. I can move the one seton to adjust it as needed, but this side doesn't move as the each end of the knot has made it stuck.

The surgery was done through a colorectal surgeon who has since discharged me from care after the surgery, and my GI (as great as he is) acknowledges that this isn't his area of expertise so he doesn't have any advice. The only thing stopping me from cutting it out is the fear that another abscess will form.

Has anybody else had this problem with setons?

Also, what is everybody on for medication now? I can add Simponi to the list of medications that stopped being effective. Are there any new medications that are showing to be promising? I talked to my GI about LDN in the past but he wanted me to try Simponi first, so that may be an option when I see him again.

I hope everybody else is doing well!
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
07-03-2016, 09:28 PM   #2
ronroush7
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Hi. Congratulations on your wedding and your wife's pregnancy. I have had an abscess but don't remember a seton. If this is not your doctor's area of expertise, maybe you need a second opinion. I am currently on Humira, Imuran, Synthroid, Entocort, Lialda, a probiotic and Prevacid. Let us know how you are doing.
07-04-2016, 11:28 AM   #3
scottsma
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Hello.I can't help with your question (thankfully) I just wanted to wish you well and congratulate you and your wife on your happy news.And yes,I do remember you,of course,I'm just sorry you've had to find your way back after doing so well.
07-04-2016, 02:28 PM   #4
Clash
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Hi kwalker, it's been awhile. Congrats on the happy news!

Did you ever try entyvio? It's gut specific, not a tnf blockers and getting some good results. There's also a study going on now with high dose stelara that is seeing good results. I think the results should be announced in October.

Hope you find something that works quickly.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-19-2016, 03:13 PM   #5
KWalker
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Wow, I'm awful. I forgot to reply! I'm so sorry Clash, scottsma, and ronroush. Thank you all for your kind words. Ronroush, I see my specialist (gastroenterologist) and then I had a surgeon that was assessing wounds. It's been so long since I've seen her though I would probably need another referral. I actually almost cut the one seton out myself the other night. One seton is really great, moves easily, and doesn't give any problems, and the other has created so many new incisions and scars that it is stuck in it's place. It's supposed to come out of the rectum but it's pulled so tight that it now sits a few inches over and the space in between has healed.

Clash, I haven't tried entyvio or stelera yet. I think because of the failed attempts I've had with all my previous medications, my GI has started looking at new medications and trials. He mentioned a new medication he wanted me to try- a medication I've never heard of and it is just in trials for crohns so I'm sure he will suggest that in August when I see him. The really nice part about my Simponi is that they completely cover it for me so I don't pay anything, I just have to let them know if I have any side-effects. I actually do get a burning/stinging sensation as it goes in, but there is no pain afterwards. Speaking of Simponi, I have to do those injections today.

If I'm being honest, prednisone has been the most effective drug I've taken. I know it's not safe and I'm borderline osteoporosis because of so many courses of it throughout my life, but it has helped me far more than anything else.
07-19-2016, 04:16 PM   #6
Cat-a-Tonic
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KWalker!! I must have missed seeing your first post but I just saw this now. Welcome back to the forum, psyllium buddy! I'm still taking psyllium daily myself and still doing well with that. I seem to be in remission and am doing pretty well for the most part. I did have about a year where I was having a lot of rectal bleeding thanks to some nasty recurrent internal hemorrhoids, but (knock on wood) those have stayed away for a few months and hopefully won't come back.

Congrats to you and, I seem to recall your wife's name is Mariah? Congrats, you two! When is the baby due? I bet you're excited!

I haven't had any abscesses myself (again, knock on wood!) so I can't really answer your questions there. As far as what meds I'm taking - Lialda is the only IBD med I'm on (I also take Ranitidine and Nexium for GERD). I take steroid suppositories (Anucort) when the hemorrhoids are actively bleeding, but I haven't had to take those suppositories for a few months now and hopefully I can avoid steroids for awhile. So yeah, Lialda is basically it right now and I'm doing well on that, it's keeping me in remission along with the psyllium.
07-19-2016, 04:25 PM   #7
ronroush7
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You are welcome.

07-19-2016, 05:15 PM   #8
Clash
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kwalker when you get the name of the clinical trial let me know.

Even though Stelara is out the higher dose version is still in clinical trials but receiving good results. My son was just approved to start stelara at the higher clinical trial doses so we have our fingers crossed. I think the trial results should be released soon. I remember the GI mentioning October, I think.
07-19-2016, 05:16 PM   #9
ronroush7
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kwalker when you get the name of the clinical trial let me know.

Even though Stelara is out the higher dose version is still in clinical trials but receiving good results. My son was just approved to start stelara at the higher clinical trial doses so we have our fingers crossed. I think the trial results should be released soon. I remember the GI mentioning October, I think.
Best to you guys

07-19-2016, 06:51 PM   #10
KWalker
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Hey Cat! I'm so glad to see you're doing well and still taking psyllium! You should see the size bags I get when I buy it from the bulk barn. I usually get a couple pounds at a time and it's so much cheaper than buying it elsewhere. I usually take 1-2 tablespoons per day (morning) but I've thought about taking it at night too. Even after being on this long I notice a big difference if I miss even one day. My wife's name is Mariah! You have a great memory! The baby is due January 4th. We actually had a midwife appointment today and were able to hear the heart beat so that's really exciting. I'm less familiar with the Lialda. Is it taken orally or through injections? Do you experience any side-effects?

Clash, it bothered me that I couldn't remember the name of that trial so I did a bunch of searching for familiar names and it may actually be high-dose Entyvio. If I recall correctly though the drug doesn't have great reviews and can have some not great side-effects. It could be a different drug though, but sounding similar to Entyvio.

I'd still like to get on LDN but I think my doctor and I have may have different opinions about it. I was also supposed to participate in a study out of Mt. Sinai hospital here in Toronto and they are currently looking at genetics and crohns but it would mean I have to take time off of work for testing and that can be challenging.
07-20-2016, 09:03 AM   #11
Cat-a-Tonic
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KW, Lialda is an oral tablet, it's just one of the mesalamine formulations so it's one of the mildest IBD meds. I'm still not fully diagnosed (nearly 7 years now of being ill and they're still not sure which IBD I have) but the good news is that whatever type of IBD I've got, it responds well to Lialda.

I'm jealous of the bulk barn you mentioned - we don't have a bulk store like that around here to my knowledge, so I have to go to the expensive health food store to buy my psyllium. I'm still just taking 1 teaspoon a day, but I'm also eating other fiber as much as I can with mostly good results. I'm having a lot of fruit, some oatmeal, and some veggies. I even had a salad for lunch the other day!

Ha ha, I don't even know why I remembered your wife's name but I'm glad I was correct! After posting that, I thought, what if I'm wrong and his wife's name isn't Mariah? That would be weird if I'm just throwing out a random name and congratulating them. Seriously though, my grandma has Alzheimer's and it's been making me worry lately about my own memory and my brain. So it's nice to hear that my memory is still good!
09-02-2016, 09:52 PM   #12
KWalker
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Hey Cat! Sorry to hear you're still having trouble with a diagnosis, but glad you're responding well to Lialda. Regarding buying the psyllium at the bulk barn (bulk food store), I always laugh because when you buy it you just place it in a clear plastic bag, and the cashiers ALWAYS mistake it for bread crumbs. Imagine psyllium crusted chicken!

Clash, I had the doctor's appointment with my specialist recently and it is Entyvio. I guess it's not a trial but apparently they're only giving it to select patients right now in Canada? I had to get approved to go on it and the company wanted me to have a recent colonoscopy and blood results so they could assess severity before they approved me. I was in the doctor's office when he was on the phone with the rep and told assured them that it wasn't necessary because I'd be up there with the worst they'll see. Is that a good thing? haha. I certainly don't feel that way but it got me approved on the spot. I'm actually going for bloodwork tomorrow and have a scope scheduled for Sept 23rd so we'll see.


I start my first infusion on September 10th and I'm not really sure what to expect. I've read that most people don't usually experience any side effects other than extreme fatigue. Do you have any experience or insight?

I've been on Simponi for a little over a year now and I think it's officially lost effectiveness.
09-03-2016, 08:31 AM   #13
Cat-a-Tonic
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Oh wow, so since the last time I posted in here, I've flared. I started flaring on July 22 and it's only gotten worse since, I ended up being hospitalized in late August (am home now and am on pred and a liquid elemental diet). Soooo, no psyllium for me at the current time. Still no diagnosis either.
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