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Fighting two autoimmune diseases

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Crohn's Disease
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Posted 4/22/2024 9:02 AM (GMT 0)
I have now a confirmed diagnosis of HS along with Crohn's. It's really challenging. I keep having this recurring perianal abscess, which would in turn, activate the previously healed perianal fistula. Doctors are at dispute. Dermatologists say it's caused by HS while my GI insists it's caused by Crohn's as it is an intersphincteric fistula. The problem is with the treatment as we keep experimenting with Rinvoq. My GI upped Rinvoq's dose to 45 mg and then said we have to go down to the recommended dose of Crohn's which is 30 mg. On the other hand, dermatologists can't prescribe Rinvoq as it hasn't been approved of as a treatment of HS yet and it's my GI's call to decide what to do. Also, the FDA approved Cosntyx to treat HS but I was informed that it's impossible for me to take it as it would worsen Crohn's. Humira is another option for HS treatment. However, my GI refused as he is afraid that I might have an allergic reaction as I did with Remicade. I can't even take all antibiotics for HS as some of them would worsen Crohn's. I have a new abscess now. The CR surgeon saw it and said that it's HS. However, this is the place of the abscesses I had before that turned into a fistula. I can't believe that no one can decide whether it's Crohn's or HS- related. Whether it's Crohn's or HS, meds should control it but it seems that Rinvoq can't do this. I don't want to take any quick decisions as I have very limited options left like Skyrizi and Entivyo but I need to discuss this with my GI. I'm trying hard to keep my sanity.
Posted 4/22/2024 5:05 PM (GMT 0)
I agree with your dr about Humira. I would also listen to your dr, not the dermatologist. Your dr knows your history much better.

Both Skyrizi & Entyvio will probably work. From what I read both promote healing of the lining. Skyrizi looks to be effective quicker than Entyvio. Entyvio is a little slower responder from what I have read in this forum & the UC forum.

Read up on both at their websites & discuss it with your dr. Good luck.
Posted 4/22/2024 9:33 PM (GMT 0)
Thank you Susie. Saw my GI and we discussed all options out there. He mentioned that Skyrizi is similar to Stelara so it won’t be successful for me as I failed Stelara. He added a new antibiotic (ciprofloxacin + tinidazole) to Clindamycin. He is following a wait and see technique before deciding to change Rinvoq.
Posted 4/23/2024 8:04 PM (GMT 0)
Minnietoty,

I'm sorry you are going thru this. I have experienced the same things regarding medication--sudden allergic reactions to meds I've never had a problem with--so your doctor taking his time changing meds makes sense. It's frustrating when meds you need can not be utilized because of Crohn's.

It's difficult when you have doctors disagreeing over the cause. That happened with my bulbous PG... GI said no, CRS said yes and 2 dermatologists said yes before he changed his mind. In the interim I just wanted answers and resolution.

To control my abscesses/fistulas we tried three antibiotics....it worked slowly. I was on antibiotics for months at a time. My GI and infectious disease doctor have now switched to IV antibiotics. IV antibiotic infusion is inconvenient/time consuming but necessitated because of poor absorbance--but it's only the one medication. The IV antibiotic infusions started to decrease abscess pain and swelling within 12 hours of my first infusion. We did 30 to 45 minute infusions daily for 2 to 3 weeks. Once I did have to repeat the infusions again for another 2 weeks when another abscess developed 2 weeks after the first 2 week round of antibiotics infusion was completed. I haven't had issues since we've done that....and it's been over a year now.

I don't know if that's an option for you or not but I did want to share something that seems to have helped me. (Those abscesses are so painful!)

Please let us know how it goes.

Clo
Posted 4/24/2024 7:49 AM (GMT 0)
Thank you so much Clo for sharing your experience. Yes, abscesses are so painful. I'm now on 3 antibiotics and I'm struggling and trying my best not to throw them up. I don't think I'll be able to finish the whole round. IV antibiotics sound an easy on stomach method and fast in their reaction. If I fail with the oral antibiotics, I'll ask to have the IV ones.
Posted 4/24/2024 4:59 PM (GMT 0)
Be sure to get on a good probiotic, antibiotics kill the good flora needed to balance the gut.
Posted 4/25/2024 2:25 AM (GMT 0)
Oh absolutely on the probiotics. You'll need them for IV antibiotics too.

The 3 antibiotics regime was really hard on me. I'm sure that you are probably struggling with it too. I was taking zofran a lot while trying to cope with the three. IV antibiotics was so much easier.

I'm crossing my fingers and toes--hoping you feel better soon.

Please let us know how it goes.

Clo
Posted 5/1/2024 9:50 AM (GMT 0)
Thank you so much, Clo. I took antiemetic tablets before taking the antibiotics yet I couldn't tolerate the nausea and had to stop them. When I saw my GI, he changed them to rifaximin and levofloxacin but he mentioned I have severe inflammation in my rectum. I'm still fighting.
Posted 5/2/2024 1:51 AM (GMT 0)
Minnietoty,

How are you?

Clo
Posted 5/4/2024 9:10 AM (GMT 0)
Thank you so much, Clo!
It turned out I have fecal impaction and the CR surgeon prescribed a compounded laxative and fleet enemas. I could finally have a bm. As for the abscess, after the radiologist revised all my scans, it’s now confirmed that the abscess/ fistula is Crohn’s related and not HS. I’m now even questioning whether I have HS from the first place or dermatologists jumped to this diagnosis since I have Crohn’s.
I have to take Tavanic (levofloxacin) for 15 days. Only 5 days have passed but I can’t feel any difference. Still I have to wait and see. Haven’t seen my GI yet to discuss whether there will be any changes in my treatment after it has been confirmed that I have this Crohn’s abscess/ fistula that I have had for years. I’m on Rinvoq and don’t think there would be any changes in treatment in the near future.
Posted 5/5/2024 6:32 PM (GMT 0)
Minnietoty,

I'm sorry to hear about the fecal impaction.... So very uncomfortable.

I have struggled with that several times. it causes me Headaches, nausea, dizziness, sudden hot or clammy periods, and ears that ring....so if you should get those symptoms they may be caused by being impacted. I was on prescription meds for it... I think I was on them for 6 months or so. We gradually weaned me off to milk of magnesia for another 6 months. My cholesterol went sky high so we started me on 5 or 6 tablespoons of ground flaxseed in a fruit smoothie every day. I have to drink copious amounts of liquids but the flaxseed also resolved the constipation/impaction issues. Too little liquid can cause an obstruction so if your physician ever does recommend the ground flaxseed route be very cognizant of your liquid intake..

I do understand your questioning a diagnosis. Sometimes I think physicians look first at our Crohn's disease and want to find another diagnosis that will conveniently tie into that.

Hang in there.

Clo
Posted 5/10/2024 4:49 PM (GMT 0)
Thank you Clo for your tips on how to treat fecal impaction. I failed the antibiotic round for the 3rd time and my GI put me on the 4th round of antibiotics. He ordered an MRI to rule out a perianal fistula. Abscess pain has become unbearable and I can’t find any drug to soothe it.,My GI prescribed Solpadeine and told me to take it until the antibiotic kicks in. Solpadeine has caffeine and I can’t sleep at all and my GI refused to give me either sleeping pills or NSAIDS. Did you have any surgeries to heal an abscess/fistula?
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