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A question to U B tough, Clo and Labradorite

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Crohn's Disease
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Posted 10/25/2022 9:48 AM (GMT 0)
Hope you are all well. I know that you all suffered from some sort of a perianal disease like abscesses and fistulas. I’m really having hard time and my GI is still for Remicade though I developed the new abscess and sinus tract while I was on it. Your experience would really be very helpful for me.
Posted 10/25/2022 11:14 PM (GMT 0)
Minnie,

I am sorry you are struggling with this.

Fistulas:
I have a RVF that's pretty large and it's the only one that never healed.

I have a colostomy, and from the colostomy on up my GI tract looks good. There's narrowing from scar tissue that's healed but so far (knock on wood) no new fistulas.

The small portion of my rectum and anus - where my fistulas all originated from - still has active Crohn's in it. It periodically acts up. To our knowledge there haven't been any new external fistulas. We are concerned about possible internal fistulas developing. I've had so many UTIs they were concerned that a fistula had developed from that area to my bladder or kidneys. We've done several tests... poppyseed test for the working portion of my colon, xrays, CT scans, sonograms... And we can't see any new fistulas - nor can we see the existing RVF. (you can see that one with your eyes.. but not on film, go figure)

Abscesses:
I developed abscesses before I would develop a fistula. Since being on Remicade I have developed another abscess (about 4 inches away from the first one that caused the RVF) that we treated with antibiotics. When I first developed it and it was larger (but before it turned into a huge red spot) we treated it with Ciprofloxin and doxycycline taken 2x daily for 2 weeks followed up with a daily 2 week course of IV antibiotics. The second time we did IV antibiotics followed with the pills and the third time it came back in the same spot we treated it with just the pills. The first time it was the size of a golf ball but no redness...2nd time half the size of a golf ball no redness and 3rd time a quarter size of a goofball with no redness. I felt it when the shower head water hit it each time. I waited a couple weeks the first time and only waited a day or 2 the next two times. Each time the abscess would drain greenish yellow puss. Since the last time we treated it the abscess has not returned. My Remicade levels were high the first time I developed the stand alone abscess (not the rvf abscess) and then they dropped to 2 and 4 during the periods of fighting the abscess off while taking antibiotics.

So I think that Remicade is helping me... It's been almost 7 months since the first round of antibiotics and I am just now feeling better.

Even with being on Remicade I still struggle with the remaining Hartman's pouch (rest of the unattached sigmoid and anus) The sigmoid and anus is just destroyed. The scope pictures really freaked me out. My colorectal surgeon has stated that if we remove that and give me a "barbie butt" I would feel much better and I probably would not have any further fistula or abscess issues. He believes my extra intestinal symptoms, abscesses, and possible fistula issues are from that one area. He refused to repair the RVF because the diseased portion of my colon will continue to act up and cause additional issues. We are going to repair it all when I have that portion removed. (Probably next year).

He believes that having the colostomy saved the disconnected colon from the diseased portion migrating up further. I do know that even with a colostomy and all my other issues.... My quality of life is much better. I often wonder why I fought so hard to keep that stretch of colon and have bowel movements like others. I'm not saying it's right for everyone. It was right for me and I wish I'd just done it sooner instead of struggling for so long.

I hope that you are able to find some relief. There's nothing worse than fistulas, abscesses and PG.

Please let me know if you have any questions.

Clo
Posted 10/26/2022 2:20 PM (GMT 0)
Clo, thank you so much. That was very informative and illuminating. I had an MRI pelvis which results showed that I have an abscess and a sinus tract. For an unknown reason, my GI refused the results and he asked for another radiologist to read the MRI. To add insult to injury, my GI is travelling and he won't be around until next week. Today is week 3 having the abscess without having any kind of treatment. I consulted the GP and his explanation makes sense to me: both the abscess and sinus tract are abutting the external sphincter; that's why, I'm having spasm and rectal pain all the time. All I know is that I'm fighting something. The irony is that I make all my best so as not to look in pain: I wear make up, dress up very elegantly and don't tell anybody that I'm suffering from this lovely pain down there.

When I saw my GI a couple of days ago, he insisted that I should continue my Remicade infusions and I should not switch to any other biologic. Well, it doesn't make any sense for me that I would develop a new abscess and a sinus tract while being on Remicade. When I developed my perianal fistula more than 3 years ago, I wasn't on any biologic then. So, I was put on monthly Remicade infusions for 3 years until it was alleged to have healed. Ever since, my doses are every 8 weeks. Given that I developed these new abscess and sinus tract while taking Remicade, why can't I switch to another biologic? I'm really puzzled.

I thought of taking an antibiotic for the abscess since my GI doesn't approve of the results of the current radiologist and we have to wait until the other one writes the new report. In 2013, when I had a perianal abscess I was put on Cephalexin 500 mg/ 12 hrs for 3 weeks and these were followed by a course of cefepime IM injections for 8 days. Now, I read that these are cephalosporins and there is a contraindication between them and infliximab. So, I can't take any antibiotics for the abscess that I can feel very well until I see my GI.
Posted 10/27/2022 3:40 AM (GMT 0)
Minnie,

It seems so abnormal to leave the abscess untreated? I'm not sure how your Health care system works, but in Canada, we would have the option to go to emergency and they would page an oncall GI. What if your GI was away for a month? At some point you need treatment. I hope you have someone that could advocate on your behalf and start demanding some treatment options. Good luck with this terrible ordeal, keep us posted.
Posted 10/28/2022 7:04 PM (GMT 0)
Minnie,

I'm in the US so our healthcare is different over here.

My GI and Colorectal surgeon think leaving an abscess unaddressed is inviting trouble in. They and my infectious disease doctor and the primary care physician immediately decided to utilize 500 mg 2x daily of the Cipro and Doxy... Plus IV antibiotics for good measure.

My GI told me --when I asked why I should stay on methotrexate and Remicade after I had developed another abscess in the same place 3 times in a row--that there are times when you may go into a flare while on Remicade. It doesn't mean it's not working... Only that what is happening in your body had overwhelmed the medications at this point and time. My follow up Scopes from my colostomy up were good.

My Remicade level is back up to 9.6. I have not experienced another abscess since the last one went away after taking only the pill antibiotics. The infectious disease doctor stated that since I was on Remicade and I developed a bacterial infection with a suppressed immune system my body would have a harder time fighting it off--thus the 2 antibiotic pills and the 2 different types of administration the first 2 times. They all think that there is a very good possibility that the abscess was there previously and that it just developed an infection inside it again....

Could this be what happened to you?

I also am very concerned that your GI did not address your abscess.. Is there a way for you to see a different doctor? Also on the meds.... The doctors would have used Flagyl instead of Cipro but I had a severe allergic reaction to the Flagyl... Could that be an option?

Personally.... There's no way I would wait on a doctor...that's out of office... to prescribe antibiotics for an abscess. Especially with our health issues. I'd ring up another doctor or go to another clinic/hospital. Waiting caused one of my old abscesses to make several tracts with a nasty fistula at the end of each tract. It was very painful and took a long time to heal. That one was opened up and allowed to heal from the inside out. Now I have a star shaped scar on my butt......

Clo
Posted 10/31/2022 7:56 PM (GMT 0)
The re-reading of the MRI pelvis came out and I have neither an abscess nor a sinus tract. My GI was right when he suspected the results. I have a problem with defecation. When I searched for it, it’s called anismus. My GI prescribed a laxative and he explained that I have anal spasm and I should by no means strain as this causes inflammation, which in turn, aggravates the spasm. Yesterday, immediately after I took the laxative, I had a diarrheal bout that made me have several trips to the toilet at night and I was very weak in the morning and I could hardly go to work and I’m not going to take it again today.
Posted 11/1/2022 7:05 AM (GMT 0)
Minnie,

I'm glad you are getting answers.

I too have difficulties with laxatives. The only one I am able to take is Milk of Magnesia. I had to try so many things before I eventually went back to M. O. M. out of desperation.

I hope you find something that works.

Clo
Posted 11/1/2022 1:33 PM (GMT 0)
Hi Minnie (& Clo!)

I'm almost hyperventilating reading your post. It just fills me with such anxiety.

Perhaps this is a blip regarding remicade, especially if you haven't had an abscess in 3 years. You could decrease the infusion time and hope that helps or push for Stelara. As you know that saved my life. I did have another drainage in June 2019 while on Stelara - although the pressure pain from the abscess was bad (not near as before) when he went to drain, there was no tract and I thankfully didn't require even a penrose drain. Thankfully I've been good ever since. If I feel something uncomfortable happening I use the Healing Bottoms turmeric suppositories to ward off any infection. I'm terrified of another abscess; especially now during covid when ER wait times are over 30hrs here. I couldn't ever wait that long.
My other recommendation of course is hyperbaric oxygen - which really helped the rvf - not so much the rectal fistulas- although the MRI showed the tracts were closing.
I guess you could also push for stem cells - but I don't think Clo had favorable results. We are no closer to getting stem cells in Canada then we were back in 2016. I do know someone trying to raise enough money to go to Costa Rica for the the transplant.
Posted 11/3/2022 5:56 AM (GMT 0)
Hi UB! I was wondering where you were!!! Hoping you were out enjoying life. Sometimes I think we lead the group in extra intestinal issues that can happen! I don't know if that's a good thing or not--but fortunately we can share what happened to us and maybe be if some assistance.

Minnie, I am glad that you don't have another abscess or fistula forming. How's it going? Did they find some other medication that works?

I don't mean to scare anyone ... But I've had so many things done to the RVF trying to close it that it's visible from the bottom..... And the void (or hole) goes in along the side half way up. I know TMI.... But a word of caution.... If your Crohn's is severe and you want to have it closed just realize that the surgery can make the problem worse. Repeat surgeries for me were not the answer......

Now I am to the point where we will have to remove the Hartmanns pouch and anus and then sew the remaining tissue together. I've been talking to a reconstructive eurogynocologist.... And even she stated that for Crohn's patients she's only having a 50 percent success rate. The tissue just isn't healthy enough and Crohn's attacks that area after the operation. The only thing they'd had work is the removal of all. 😩

Crohn's is such an unpredictable disease.

Clo
Posted 11/9/2022 7:34 PM (GMT 0)
Hi Clo - you're absolutely right, I am enjoying life!! I even have managed a small job but I'm still fiercely advocating for a livable income for the disabled. It's an uphill battle but I hope within a year we should be getting an above poverty disability benefit.
Funny - even though covid is raging and I'm still very isolated; I'm the happiest I've even been in life. Over 30 yrs of this IBD hell was enough, that even lockdown didn't bother me in the least. I had my colonoscopy in April and it was absolutely clean! Not even a pseudo- polyp. No evidence of scaring or fistula tracts etc. I got a gold star.
I am not without fear though. It's always lurking underneath. there's no new drug if Stelara fails....what happens then? Anyway, I'm +40lbs heavier and eating everything but gluten. For the most part I stick to a keto diet which I also credit for healing. I still get tired and fatigued though. Working even part time is too much. My body is still fighting itself that I'll never be "normal." But I'm definitely in the "r" wordsmile

Your continued struggles make me so unhappy for you (and Minnie) and of course anyone else following in our footsteps. Unless you have a fistula; you have no idea. Same with a RVF - as you know I had a breakdown, and know that I wouldn't be able to handle that kind of trauma again. It really messed me up. I'm sure you have your days too. How do you cope? It's a really tragic and intimate disease....

Interestingly, Ostomy Cure that does the TIES replacement to a bag is now actively recruiting patients in Europe and India. Of course, it's not suitable for crohns - but to have bionic, screw on device, with no external bag is quite remarkable. I hope there's something for us in the works.
Posted 11/10/2022 12:17 PM (GMT 0)
Hello everyone
I really appreciate your response and enlightening feedback. I'm very glad to hear from all of you. I'm also very happy that the quality of your lives is better and hope it will continue to be.
I was a bit away as I was seeking a third opinion. I was actually very confused when my GI said I have anismus. He didn't say that term but all the explanations he gave me lent itself to this. So, yesterday, I saw a colorectal surgeon. After examining me thoroughly, he said that I have a hypertrophied anal papillae, which is a remnant of my previous perianal fistula. Sometimes, this papillae gets inflamed; that's why I feel pain down there. Also, according to the CRS, it is a lot of time mistaken for an abscess on MRIs.He also mentioned that he would have incised it with a normal patient, but this won't be feasible with Crohn's. He welcomed the idea that I had already started a round of antibiotic as he found me constipated and not having my usual diarrhea.
However, he mentioned that instead of having anismus, I might have proctalgia fugax as this feeling of spasm is recurrent but I don't have any rectal spasm. He even suggested that I should stick a GTN patch on the anal verge when I get this feeling of spastic anus.
Posted 11/11/2022 6:23 AM (GMT 0)
Minnie,

Glad you are getting a third opinion. Colo rectal surgeons are so very helpful.

My fistula track and the surrounding area will periodically get inflamed and sometimes infected..... The antibiotics help me with most of the symptoms. It's very uncomfortable while I am.battling it....and that's just the portion of my colon that I do not use anymore.. But it flares up and then has more symptoms and mucus output.... Which results in those dreaded spasms.. It's one of the times I am grateful to be "unhooked". If I were still functioning I would be having multiple accidents per day.... But with a colostomy there's only mucus so it's not as bad. Oh.. and my CRS does not operate on Crohn's patients fistulas either unless it's to open and drain a large infected area.... And even then he really doesn't like to..

Did he give you a game plan for getting over this episode and how to prevent it from occuring in the future? (My CRS eventually gave me a perscription for antibiotics to have on hand for when the flare starts getting bad..) Besides that he told me to buy a hand held shower head with a strong spray and to hose out the fistula tracks I have.... to use antibacterial soap on them daily and to increase number of showers every day when flaring plus to add a sitz bath..

Hang in there!
Clo
Posted 11/11/2022 9:28 PM (GMT 0)
Thank you so much, Clo. Glad that you are well taken care of and that your CRS has a plan for you.
Well, my CRS recommended I take levofloxacin every 3 months. I was waiting to ask my GI about it.
I’m really thankful to you that you told me about your plan. This papillea is flaring up these days and no CRS recommended anything to help ease my pain. I do apply sudocrem but I don’t think it really helps.
Posted 11/12/2022 7:39 AM (GMT 0)
Minnie,

They did give me meds for the spasms. I don't use it very much as it makes me very constipated.... Plus it doesn't help with the interior pain. The things that help the most are the antibacterial soap, super strong shower head and the sitz baths... Then I cover everything with calmoseptine. The antibiotics are a game changer. (There's just this feeling you get when those tracks are inflamed that once you feel it--you don't forget it. ) I am so thankful my CRS trusts me enough to know when I really need them.

I hope that you find something that works.. I am also very happy that you do not have a new fistula.

Clo
Posted 3/29/2023 3:24 AM (GMT 0)
Hi Minnie! I’m so sorry I haven’t been around and missed this! How are you doing at this point? I have been extremely fortunate that my fistula hasn’t returned now 9years later (😮 how has it been that long!) But I did still deal with it getting irritated and painful in that area for a good portion of that time and to some extent now as well but the care has become so ingrained in my routine that I don’t notice. Initially I would occasionally need a topical anti fungal to help. Like Clo, the shower head tactic was very important. I had to wash after every trip to the bathroom and not do to much wiping that would irritate it. I also have to keep it dry so would leave soft toilet paper up against it that I got over the sensation of but has helped keep it under control. I also only use a very mild soap like Burt’s bees for babies otherwise anything else would make it inflamed. I was getting pretty intense spasms for years after as well. Idk if any of this is helpful.
Posted 3/29/2023 3:41 AM (GMT 0)
Hey Lab!!!! So glad to see you. Minnie... Sorry I went off topic....

I've been thinking of you and wondering how you are doing.... If you found something that works. My friend was using the shower head and it helped but not enough... So she said she bought a water pic like thing.... It's stream. Is much thinner. It seems to clean better but she has to be careful with it as it can make her very sore if she cleans too much... She uses hot water in it...

I was going to say... My PCP did prescribe a cream with lidocaine in it for down there when things are very uncomfortable. (That helps) He also gave me plain lidocaine and told me I could use that on a q tip to try to help. I haven't had to do that yet. I am thinking about getting the water pic thing though for those in-between times at home when I need something stronger. BTW a portable bidet helps a lot when you are out and about. Just a thought.

Clo
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