My mother has suspected Crohn's with perirectal involvement.

Firstly, I know there are people suffering far worse from this disease, and my heart goes out to them. I hope my venting a little here does not come off as minimizing your suffering or personifying my mom's over yours. We know she is lucky not to be worse off... especially given some of the hospital's screw ups in the journey to this tentative diagnosis and initiating treatment for it.

My mother is 60 years old. She has a history of bloody, painful bowel movements. 12 years ago she had GI workups that didn't indicate Crohn's but did suggest IBS of indeterminate etiology. They put her on Sulfasalazine and her symptoms improved immensely. They discontinued it, and never told her she needed to follow up or continue treatment. She assumed it wasn't an issue. They did a very poor job of communicating the situation to us, and made us feel that this was not a serious condition or something she required further followup and treatment for.

At the end of February this year she developed high fever, vomiting, and a lump and redness around her rectum. On March 1st she had a perirectal abscess incised and drained, and two necrotic hemorrhoids removed. The surgeon said that the abscess was "quite remarkable" and "one for the record books" in size. I do not know if that was hyperbole. It was a horseshoe abscess, and left bilateral tracts that required wound care, which I administered for several months after being taught how to do it by wound care specialists both in the hospital and at home briefly. We did not have access to wound care on a regular basis by anyone else, so this was our only option.

There was only intermittent followup examination by the surgeons, most of the followup was just cursory examination by wound care nurses. They felt she had UC and not Crohn's and that the wound tracts would heal.

During this time, she chronically would end up in the ER and back in the hospital with new loculations and multiple new tracts forming due to wound tunneling and drainage from the original abscess space. They just kept incising and draining these, putting off putting in setons. They really made a lot of mistakes in our opinion, the misdiagnosis being one, but also clerical errors like scheduling her for surgery once they finally agreed she needed setons, having her wait 13 hours, and then saying oh, sorry, the surgeon never examined you so you can't have this surgery, it would be unethical. You have to wait another two months. During which time she continued to form tunnels/tracts, and experience infections. This period really increased the complexity of her fistula problem in my opinion, but I'm not a doctor so I can't make that determination obviously.

Finally she got setons in. They did not place them in the draining tracts, but made new incisions to place them instead. Then they broke. They replaced them with sturdier, looser ones, which lasted for a couple of months or so. During this time she still continued to form new tunnels and experience infections.

She then finally had a GI workup, which took many months to get. They found some polyps and more indeterminate areas of inflammation, but nothing that looked exactly like Crohn's. However, they couldn't get into the ascending colon due to torturous intestine at the hepatic juncture. So it could be hiding out there, potentially. Regardless, due to everything else going on, they have changed the diagnosis to IBS with probable Crohn's.

Then they put in cutting setons to try to reduce the number of tracts from five to two if they could. Unfortunately, they cut within a day or two instead of over months as intended, opening the largest wounds she had had to date within hours, and causing her unbearable pain. It was devastating to see her in so much pain. They removed them, and put back in rubber, loose ones. She has felt much, much better since then, and it did at least achieve the goal of reducing them down to two tracts. (Well one horseshoe terminating in each hip, two openings total) One rubber band through that tract.

The colorectal specialist who now manages her surgeries going forward (they are assuming she will need more incisions and drainages and more setons going forward) believes she has Crohn's. They prescribed mesalamine, which completely resolved all of her bleeding and other symptoms during bowel movements. However, they then changed it to Balsalazide (which is metabolized into mesalamine) because of prescription coverage issues. Since then the bleeding and pain has not returned at all, but she does have slightly more frequent bowel movements.

She takes three sitz baths a day.

After a month and a half of much improved quality of life and no pain or other symptoms (just normal drainage,) the left side wound is now red again, and a smell of "rotten beef stroganoff" (our description for the wound odor she gets when she is developing a new accumulation of drainage behind a wound, or a new infection) has returned. We are going in to have her examined as soon as her surgeon is available (and back to the ER if her fever spikes... hopefully not, as that's always a nightmare.)

The last time she had surgery, they saw no more communication with the original large abscess space. The hope is that this is just another tract forming, or a loculation, or some inefficient drainage bottling up behind the wound. But we always worry that the abscess space is communicating with her ascending colon or weeping fistulas or something. They have not ruled that in or out at this point.

As I said, I know many here are suffering far more, so I hope I do not come off as selfish or uncaring. I do care. It's just very overwhelming for both of us, and it feels like it will never end or stabilize. We have spent most of year in and out of the hospital, and having to engage the patient advocate to help us ensure that she receives proper care (I can't begin to go into the depths of how often they have been dismissive of her feelings or wishes due to her age and passivity. She has autism mildly, and tends to just sit and suffer rather than "bother" anyone, so having advocacy by both myself and the patient advocate on her behalf has been essential because unless she asserts herself (which she does not) they steamroll or dismiss her.

Has anyone else in a similar boat had an eventual return to a more normal quality of life eventually? Does she have to look forward to this for the rest of her life essentially? And should they be doing more imaging to ensure there is not a return of the larger abscess space? (Last CT she had was in April, never had an MRI.)

Advice and insights are appreciated. Thanks, and good luck and lots of love to anyone else going through this, and worse.

Post Edited (WoundPacker) : 11/7/2012 4:32:17 PM (GMT-7)

I agree that she may need better management than what is essentially the active element of a 70 year old sulfa drug. I think their reluctance in that regard is because they don't have a gold standard diagnosis of Crohn's, and because coverage would be difficult for her to get. All she has is Medi-Cal for her coverage. I don't even know if it's in their formulary, let alone covered. We would never be able to afford it, even on a co-pay basis, which is unfortunate because from what I am reading it's her best bet for continual management of fistulae.

The other problem is that her condition is always in flux. During one surgery, they find five fistulae. During another, one tract with no communication to anything internal. And they have never been able to trace communication to the origin of the fistulae, and as I said, haven't seen all of her colon. So... they are kind of in the dark empirically speaking. They can only guess and take their best shot.

Which is incredibly frustrating. You'd think they'd take a better look. But then I feel like, oh, I'm just a layperson what do I know, I'm probably being paranoid, or they probably have a good reason to not do that. Etc. etc. It's very hard because I am usually the one who has to advocate for her, and I don't know when I'm doing what's in her best interests, and when I'm just being overly pushy to medical professions who probably know far more than I do about what's best for her. And it's a county hospital willing to take low income and no income patients, so I feel like I'm asking too much for an overcrowded facility.

C.diff and Pancreatiris. Ouch. :( I'm glad you're doing better now. That sounds scary from what I know of those conditions. Thanks for the reply. Be well.

Yep, we're in California. It's sad that what I described makes people think "must be in the states" lol. But it is so very true.

Sorry, didn't mean to get off topic. I hope your course of treatment resolves things for you. It is both comforting and sad to know others are coping with this. Comforting for obvious reasons, but sad because I wouldn't wish it on anyone.

Another problem she has is that by constantly seeing different surgeons and different doctors and not arriving at a firm consensus, they always have a different approach. Since the colorectal specialist only saw one horseshoe tract, and no communication, and she wasn't present for all the history prior to that, she is very reluctant to treat her as though there is ongoing seapage coming from somewhere. But how rapidly she gets new tracts, how draining one does not stop the problem, and how the drainage just builds up despite the setons and forms new tracts around them, really makes me think just on a conceptual and intuitive level that it is coming from somewhere. I know from getting a crash course in wound care that wound tunneling can and does happen. But not usually that aggressively and rapidly if 1) there is a drain, and 2) there isn't infection. Both of which are true in her case usually.

That and the large size of the original abscess (and how high it was.. I forgot to mention, the original abscess space wasn't near the rectum, it was much higher, closer to the colon according to the original surgeon. He was the one who was initially suspicious of IBS and not just the hemorrhoids blocking a gland and causing a perianal abscess. It was way too high to be that in his opinion.

It all makes me feel like they are missing the source of the fistulae, and as such darning her to repeated surgeries and drainages. They say she's already had too many rectal contrast CTs, which I understand. But why not an MRI? Sure it's less specific, but isn't that better than just waiting to see if the abscess space fills back up, especially if it's walled off again now and not communicating with the draining tracts efficiently?

These are the kinds of things that worry me. Because every time she gains some stability and normalcy, it just starts up again. She can never go longer than a month or so without having to have another operation, and this has been going on for a year practically. It just seems like there should be a better approach. Does that make sense?

Thanks so much for the reply and advice and for sharing your experiences.