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Crohn's Disease Forum » Your Story » A Seton to Call My Own


07-24-2012, 02:31 AM   #1
Danu
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A Seton to Call My Own

Hello everyone,

I'm new to the forum and thought I would start out by sharing my story. The past few months have been a whirlwind with doctor visits, diarrhea, loads of new gastroenterology words to add to my vocab, and, did I mention diarrhea?

It all started when I noticed a lot of mucous in my stool. I thought it was weird, but didn't want to think too much of it. Then a few days later I started noticing the blood and increased mucous in my stool. I had just started taking metformin for PCOS and at first I thought/hoped that maybe it was a weird side affect of the metformin. I had been warned that metformin could cause GI issues.

I ended up seeing a GI doctor and his PA. Upon hearing my symptoms, the PA ordered blood tests, breath tests, and stool samples to screen out infectious disease/possible parasites. He also scheduled me for a colonoscopy. The lab work all came back normal, except for a slightly elevated white blood cell count. (note - my GI doctor said the metformin didn't have anything to do with my symptoms)

Then came time for the colonoscopy. I was warned by family and friends that the preparation was the worst part, and, they were not exaggerating! I don't think I'll be able to drink yellow gatorade or eat lime jello ever ever ever again. I think the prep would not have been so bad, except that I was already having horrible rectal pain and going to the bathroom became excruciating!

The colonoscopy showed that I had ulcerative colitis across my entire colon, with the worst of it on the right side towards the entrance of the small intestine. My doctor put me on asacol to treat the ulcerative colitis, but he was concerned that I may have chrons. He ordered me to do a small bowel series at the hospital.

So, I went to do the small bowel series. I checked in at the hospital, drank a couple liters of chalky/strawberry barium deliciousness and had my small bowel x-ray'd to check for chrons. The x-ray came back negative and I was told to drink lots and lots of liquid. The tech's joked that the barium would turn to stone in my intestines. No joke!

Needless to say, I got pretty constipated after the barium/small bowel series. About a week later, after struggling on the toilet I noticed quite a bit of blood. By this time, the asacol had started taking affect and I had actually been feeling quite well. I convinced myself (I know, stupid) that the blood was simply because I was constipated from the barium and had pushed too hard while attempting to pass a small boulder.

So. One week later a bump starts forming. I figured it was a hemorrhoid from all the constipation I had been having. Like I said, it had been a few weeks since I started the asacol and my Ulcerative Colitis symptoms had largely cleared up (no more diarrhea, no more blood, no more mucous). I put some Prep-H over the bump and figured that was that.

Another week goes by, the bump is getting bigger. It's becoming uncomfortable to sit/stand up. I still smother the thing in Prep-H and convince myself it's just a hemorrhoid. It became really painful. I finally got a mirror and looked down there and was shocked to see a huge abscess. I grabbed my husband and we went to the Emergency Room.

Never in my life have I felt such pain! At the emergency room they numbed the area with a local and then lanced and drained the abscess. It was awful, but it was a relief to have the thing drained. I was ordered to take sitz baths, but not given antibiotics, which was weird. He also gave me some pain pills which helped. I was back to work a couple days later feeling ok.

Two days later I was able to get in to see my GI doctor. He did an exam (which involved shoving a q-tip through the abscess...very very painful!). He put me on antibiotics. He was concerned it was a fistula but wanted to give it a week to see if it would heal up on it's own. It did not. He referred me to a colorectal surgeon.

Last week I met with the surgeon. He did his exam. I had no idea they made speculum type devices for your rear, but let me tell you, they do. He explained that he suspected it was a fistula and wanted to put me under so that he could examine it further and possibly place a seton.

This morning I went in for the procedure. I was really hoping that it would just be a abscess that he would further drain and plug. It turned out to be a fistula and he ended up placing a seton. He said that as far as fistulas go, mine wasn't that bad. He said that the seton would likely be in for at least a few months. I'm worried about work. I'm a geologist and I do a lot of field work. Not looking forward to having a draining seton while I'm out in the field.

It's really not as painful as I thought it would be. I am not in as much pain as I was after the initial ER visit. The amount of blood draining is slightly alarming (but normal, according to the dr.). The seton doesn't hurt, but it feels really weird. I'm scared to sit down or stand up quickly, but surprisingly, I'm not too uncomfortable. I'm just scared to test the limits. I'm tired of being in pain.

This whole situation has been surreal. It leaves me feeling pretty frustrated and sad most of the time. I am normally a very active person. I love working out, etc, but haven't been able to do it in months. When the UC was flaring bad, I was afraid of having an accident. And now I need time to recover from this seton placement. I'm just looking forward to feeling somewhat normal. I'm on a low residue diet for the UC, I'm still flaring but symptoms are better. I miss fruit! I miss raw veggies. I miss practicing yoga. And I can't believe that there is now a string coming out of my rear draining puss and blood. (ok, enough of a pity party!)

This forum is wonderful and I look forward to reading other's stories and sharing my own. Hopefully to help some. Thank you for reading : )
07-24-2012, 07:21 AM   #2
Grumbletum
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Hello Danu and a big warm welcome to the forum. Glad you have found your way here. Well, your introduction to IBD has certainly been baptism of fire. I know what you mean about the big learning curve. When I first joined the forum, I spent a lot of time wondering what people were referring to, but it doesn't take long to start feeling like a veteran!
I sure hope the seton sorts out the abscess as quickly and painlessly as possible. Do you have a definite diagnosis now? It's just I thought fistulae and abscesses where more of a Crohn's thing..................but I could be wrong!
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07-24-2012, 08:39 AM   #3
Angrybird
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Hello Danu and welcome to the forum, am glad you have decided to join I am sorry to hear about the troubles you have been having, I will certainly be keeping fingers crossed that things can soon be improving for you. If you have not already then definetly check out our fistulas/abscesses sub forum so you can have a chat with others about these: http://www.crohnsforum.com/forumdisplay.php?f=76.

AB
xx
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07-24-2012, 10:14 AM   #4
Danu
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Thank you to you both! My Dr explained that it's too early to tell whether I have just ulcerative colitis or crohn's. He did say that fistulas are more associated with crohn's diesease, but only time and what direction my condition takes will tell. He said it's possible that I have crohn's colitis. We'll see how it goes!

Officially I'm diagnosed with ulcerative colitis. But the biopsies done during the colonoscopy came back kind of abnormal for ulcerative colities, and I have a fistula. So, I have a very confused colon!
07-24-2012, 08:47 PM   #5
David
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Hi Danu and welcome

I'd discuss with your GI having a Prometheus IBD sgi Diagnostic test rather than do the wait and see approach. This is a test that can help differentiate between Crohn's and UC. It's not perfect, but it may help differentiate which you have. This can be VERY important because of your current treatment regimen. Asacol is for Ulcerative Colitis. It helps with some Crohn's patients but the problem is, it's mostly a topical agent. Think of it as a lotion. As UC only affects the mucosal (innermost) layer, it's great for that. But Crohn's can affect the entire width of your intestine so you can have inflammation that the Asacol is not helping.

Either way, I'd also look into dietary changes if they haven't brought that up. Many people have had symptom improvement with the paleo diet or specific carbohydrate diet.

Again, welcome to the community By the way, you're a very good writer.
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07-25-2012, 06:50 PM   #6
Danu
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Thanks, David! You just made my day. I'm going to ask my doctor about that test when I meet with him on Friday. Much appreciated!
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