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Started Stelara but maybe I'm too immunosuppressed??

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Posted 5/27/2017 7:31 PM (GMT 0)
I'm thinking I made the wrong decision to start Stelara......who knows......

I've been chronically abscessing since October. (Just out of a 6 week hospital stay for seton torture.) I've abscessed twice since but last week I had 7 days with no drainage and no abscess pressure pain! I thought I was finally getting rid of the infection......I had my first Stelara infusion on Wed and yesterday I started with the pain again. It's highly likely that I would have anyway but i can't help wonder how I'm going to rid myself of this infection if I'm taking immunosuppressants??

I was on humira at 80mg/week, maybe too high and thus the reason for continued abscessing?

I generally feel awful; going through oxycondone withdrawal as well. Not fun. I'm forcing myself to get out and do things knowing the next abscess could land me back in the hospital but I can't describe how badly I feel. I don't even want to go to any follow up appointments.

I have been approved for the anti-MAP antibiotics and wondered if I should have gone that route instead of Stelara. I just don't think I can handle the abscess pain anymore.

I'm so upset that no one can stop me from abscessing.
Posted 5/27/2017 8:00 PM (GMT 0)
I just don't know, in all honesty.

I think perhaps you would have done better having a temporary stoma, which would have given the area the best chance of healing - and then starting Stelara when everything was healed up. But it's too late now. I mean, you could still have a temporary stoma if you wanted - it's not too late for that. But you've already started the Stelara and can't reverse that.
Posted 5/27/2017 8:45 PM (GMT 0)
Have you asked them if they think the abscess is from a chronic inflammation vs an infection? I guess I am asking if an aberrant immune response can cause an abscess... I do not know.

If it get's worse with Stelara than perhaps it is an infection. What I simply don't understand is why they cannot culture or do something to figure out why or what exactly is causing your chronic abscess's. It makes no sense. This has been going on for a very log time now. Far to long.

Awesome on the aMAP. I am shocked!

In thinking just now, how was your abscess when you were taking the Clofazamine or whatever it was during your hyperbaric treatments. It was recently. Did it help or make a difference?

Also thinking just now, are they going to allow you to continue your hyperbaric treatment along with aMAP and Stelara?
Posted 5/29/2017 12:35 PM (GMT 0)
I know I'm likely heading toward ileo; however I'm not mentally there ....yet.

My surgical team wants me to "exhaust all medical options" before surgery as with fistulating CD it would have to be a permanent ileo and highly likely rectum removal. My surgeon said the ideal would be to get my left sided inflammation under control so he could do a colostomy for me.

Regarding Stelara----it's already working!! The last 2 days I've only been once (from 3-4 all normal poops) and was able to eat and go for a drive, went to dinner without needing a bathroom. Unfortunately I'm still dealing with abscess pain. I hope it bursts on it's own like the others.

Canada-- you would not believe how disinterested the hospital GI's were. I was there for 6 weeks and only saw them 4-5 times. They had no imputus, desire or motivation to do anything. I literally had no IBD treatment while there. It was mainly pain control after an I & D. I'm mad at myself for not insisting the setons were removed much sooner than they were as I'm now dealing with withdrawal which is the worst.

I believe they've said it's from inflammation but they really don't know. That's all I've heard is that "we don't know" about everything including if my PG would return around my stoma. The IBD wing was full of people with ostomy's and fistulas....it scared me. But so does this chronic abscessing and what it's doing systemically. I don't know how much more I can tolerate, but an ostomy seems like the wrong way to deal with it. I have been tempted to just stop everything, go back on IVIG and see what that does. Maybe I'm too surpressed ?

I was on clarithroymicin for about 10 weeks while on humira and HB. It didn't do anything (as far as I could tell) as I continued to abscess. HB was extremely helpful in helping my bowel urgency and my fistulas definately shrunk but the abscessing wouldn't stop. I'm afraid this current abscess will land me back in ER.....It's crazy how long this has been going on and there's no motivation to try and stop it. The recto-vag re-opened last Monday....it had gone from 2mm to .06 mm.....

I think I can return to HB when I start aMAP----not sure when that will be though. I haven't made a GI appointment. I'm tired and lacking motivation. It's been a long fight. I hope to try and enjoy the summer, hopefully without another ER visit and the abscessing will subside....if not I'll need to look at an ileo----I trust my surgeon when he says that after 6-12 months when they reconnect the disease will returnsad
Posted 5/29/2017 1:11 PM (GMT 0)

U B Tough said...
Regarding Stelara----it's already working!! The last 2 days I've only been once (from 3-4 all normal poops) and was able to eat and go for a drive, went to dinner without needing a bathroom. Unfortunately I'm still dealing with abscess pain. I hope it bursts on it's own like the others.

Jeez, that's good - congratulations!

I really want to try Stelara, as I don't think Entyvio is doing very much for me. But will have to wait 'til next year for that.

As for not being mentally ready for a permanent ileo, I understand. I had an ileo for 2 years and it was fine. But on the other hand I'm not in a mad rush to go back to having one.

U B Tough said...
Canada-- you would not believe how disinterested the hospital GI's were. I was there for 6 weeks and only saw them 4-5 times. They had no imputus, desire or motivation to do anything. I literally had no IBD treatment while there. It was mainly pain control after an I & D. I'm mad at myself for not insisting the setons were removed much sooner than they were as I'm now dealing with withdrawal which is the worst.

Urgh. That's insane. Didn't your own GI come to see you? Not sure how you can manage to be in there for that long without a treatment plan being implemented.

That said, I didn't have much interaction with GIs when I was in hospital. My surgeon was actually really good about coming to see me most days, but she was the exception rather than the norm.
Posted 6/1/2017 1:29 AM (GMT 0)
Something just doesn't seem to add up. I remember when I would end up in the hospital in KW (Grand River Hospital) the GI's would come once per day on their rounds. Occasionally every other day. It was a different GI each day as the local doctors take turns doing rounds. I found that nice as you would get a lot of different opinions, not just a single doctor. Maybe TO hospitals are stretched due to population.

Perhaps next time you could try a hospital in a smaller town nearby?
Posted 6/5/2017 5:14 PM (GMT 0)
Are you taking antibiotics with the Stelara? I thought that I'd feel better right away after the Stelara IV because I felt great the yr before after my 1st loading dose (90 mg loading dose and then 45 mg dose 2 weeks later). I had to stop for 6 months because of an unrelated surgery, in the interim the FDA approved the CD protocol with the larger dose IV.

Sometimes when the stelara wasn't working 100% for me I had to use antibiotics in conjunction. I did not have abscesses just regular IBD flares.

about 3 weeks after my IV loading dose I really did start feeling better and even better after my first regular dose. I'd give it some time before you made a decision about surgery.
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