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Crohn's Disease Forum » Your Story » Mild Crohn's Colitis - Affected mostly by Abscess & Fistula


 
09-26-2012, 12:35 PM   #1
Lil Beak
 
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Mild Crohn's Colitis - Affected mostly by Abscess & Fistula

Hello to all:

I was recently diagnosed with Crohn's Colitis in July of 2012 at the age of 27, though i had exhibited certain tell-tale symptoms since 2011. I had re-occuring diarrhea and consistent weight loss since September 2011 just about every 2 months like clockwork. It wasn't until July of 2012 that i had a flare that included a 4-day long fever of 102 and blood in the diarrhea. I thought maybe i had a stomach flu since it had never been this severe before.

I went to the ER one morning when the diarrhea was particularly furious and i knew i was probabaly badly dehydrated. That's when the ER doctor asked about how long i had been having these symptoms and such. It was my first real time telling a doctor about the re-occuring problem. That doctor acted fast and admitted me to the hospital for fluids as well as a dreaded colonoscopy scheduled for the next morning. I did the Golytely laxative drink prep and that was awful. I couldn't believe there was even anything left in me to let out, but there was, and it went on all night.

I had the colonoscopy the next morning and the G.I. that did it said it looked like mild Crohn's in the colon only. He took biopsies and when those came back it was positive for IBD. He put me on a mild sulfasalazine drug called Colazal that i take 6 times a day (9 when i'm flaring). It's job is to breakdown in the colon and release anti-inflamatory agents in there. I started another flare a month and half later that i am currently in right now. Loose stools about 3 x a day, but very little blood, so i believe the drug is doing it's job. The flare has been less severe all around.

My real problems started when i returned to the hospital in August 2012 with an anal abscess. I had never experienced something like this before. It was the most painful thing i have ever been through. The pain was intense no matter what i was doing: laying, walking, sitting, coughing, sneezing, etc; and no position or painkiller eased the pain at all. I thought it was a bad hemmorhoid as at first it appeared to look like one on the outside of my anus where i was feeling the pain. It soon got red, more swollen, and the hemmorhoid thing turned out to be an anal skin tag developed by a fissure i had gotten due to all the diarrhea.

I saw my doctor and she ordered a pelvic CT scan. Thats when it was confirmed that there was a collection of pus in that area and that i was dealing with an anal abscess.

I had it incised and drained at that time which really relieved the pain. But in 2 weeks the skin at the incision hole was closing back together and it was painfully swollen again. I saw a Colorectal surgeon and he said i had developed a fistula, and the tract of it was probably just underneath that anal skin tag i had. He incised it again for me.

The fistula incision hole closed again 2 weeks after that and again got painful. I went back to the CR surgeon for another incision and drainage. This happened 2 more times since then, and now the CR surgeon is going to do surgery on me for placement of a non-cutting seton on October 4th.

I don't mind the idea of a seton as long as it means that i wont have pain anymore during or after a bowel movement, because in theory the seton should keep the fistula's tract from closing and swelling up / re-abscessing which is where my pain usually stems from. When i would have an incision done, the next few weeks were always pretty good because i had minimal pain. The seton should keep me in a perpetual phase like that. At least that's my hope.

Well, that's all i have as far as a story. I hope i make some friends on this forum that i can be encouraged by and can likewise encourage them. That's the power of a community! It really helps.
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*~* Lil Beak *~*
Diagnosed: Crohn's Colitis July 2012 at age 27

Currently: In a flare (just fever and diarrhea 3-4 x daily) since late Sept 2012.
And an anal abscess turned fistula since August 2012.

Surgeries / procedures: 3 incision & drainage procedures for recurring anal abscesses. Successful surgery to place a non-cutting seton on Oct 4, 2012.

Current Meds:

Colazal capsules (6 x a day, 9 when flaring)
Going to start 6MP in the near future
09-26-2012, 12:59 PM   #2
David
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Hi Lil Beak and welcome to the community! Thanks for joining and sharing your story. However, I'm afraid I have a couple pieces of news that you might not like. I say this from a place of support as I sincerely want nothing but the best for you and to get the care you deserve:

1. If you have a fistula, I'm afraid you don't have mild Crohn's Disease. You actually have a severe kind.

2. If all you're on is the Colazal, that is nowhere near a powerful enough medication to treat fistulizing Crohn's disease.

I suggest:

A. Do you have a regular GI that you see routinely? If so, are they aware of the Fistula and that you're only on Colazal? If you don't have a regular GI, get a referral and appointment ASAP. They'll probably also want/need to evaluate your small intestine for any disease.

B. Check out our treatment section and begin to educate yourself about some of the more powerful treatment options for Crohn's disease. Stay our of the 5-ASA subforum, they aren't what you need.

It's imperative that you get on a proper treatment regimen soon.

We're here for you.

*hugs*
09-26-2012, 01:27 PM   #3
Lil Beak
 
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Hello David, and thank you for the reply.

I do have a G.I. that i see regularly. He knows about the anal abscess turned fistula, and he said he wants me to go on 6MP. As you probably know, it is an immuno-modulator and he said it is supposed to be helpful for treating and preventing fistulas.

I gave blood for the Prometheus test last week and i am still waiting on the results. He said that the results would say whether my body would be able to metabolize 6MP sucessfully or not. Have you heard of this being an appropriate treatment for fistula?

Also, when i had a colonoscopy they looked throughout the whole G.I. tract. He said all else was normal except the mild inflamation in the colon. That was 2 months ago, why would i have to have the small intestine looked at again so soon?

Thanks for all the helpful advice and informaiton you have given me! I am so happy to be a part of the forum family now! It truly is the best support.
09-26-2012, 02:40 PM   #4
David
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Ah, I feel much better already

While 6-MP wouldn't be MY first choice for fistulizing Crohn's, it is sure as heck a lot better than the Colazal and yes, it can help fistulae. That your GI is doing a TPMT test is a good sign as well.

The problem with a colonoscopy is that it only reaches through the colon to the very first part of the small intestine called the terminal ileum. You may have inflammation that is further up than what they could see. As you have fistulizing Crohn's, I personally would want to make sure that there wasn't any inflammation anywhere else. However, the nice thing about the 6-MP is it will hit the inflammation wherever it's at
09-26-2012, 03:15 PM   #5
Lil Beak
 
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Thank you, David for the info

Have you taken 6MP? If so, what was your experience with it?

Thanks.
09-26-2012, 03:17 PM   #6
David
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I have not, no. We have a forum dedicated to 6-MP located here where you can connect with others on it though. You'll see some threads/posts from people speaking of Imuran and Azathioprine. Those medications turn into 6-MP in the body so are VERY similar.
09-26-2012, 04:32 PM   #7
Catherine
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My daughter experience with aza has been good, she is now in clinical remission.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
09-26-2012, 05:16 PM   #8
Earnellzwifey
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Welcome LilBeak to our happy CD family. Hate you had to join but love all new members. I am glad that they getting on top of your disease so quickly and hope you find remission soon.

I do have a question for you though. I also have a perianal skin tag that was first thought was a hemmy. It is itchy and painful unless I put my steroid cream on it. I am currently in the hospital with a inconclusive infection. WBC is very high. I think my tag might be abscessing but they done a ct scan upon admission and did not mentioned anything about it. Did you have any other markers of infection or was is diagnosed solely on the pelvic CT?
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Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
09-26-2012, 05:52 PM   #9
Lil Beak
 
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Welcome LilBeak to our happy CD family. Hate you had to join but love all new members. I am glad that they getting on top of your disease so quickly and hope you find remission soon.

I do have a question for you though. I also have a perianal skin tag that was first thought was a hemmy. It is itchy and painful unless I put my steroid cream on it. I am currently in the hospital with a inconclusive infection. WBC is very high. I think my tag might be abscessing but they done a ct scan upon admission and did not mentioned anything about it. Did you have any other markers of infection or was is diagnosed solely on the pelvic CT?
Hi Earnellzwifey! Thanks for the warm welcome to the family, though it is unfortunate that we all have to be members of it.

My anal skin tag was looked at by many GP's and even my G.I. doctor at first, they all concluded that it was a hemmorhoid, and told me to treat it like one (the creams, suppositories, hot baths, etc) and that it would go away eventually. The pain of it kept getting worse and so did it's swelling and red color. I had the CT scan that only came back showing the collection of pus in that area where i was feeling the pain (around and under the tag), and the CR surgeon that i saw afterwards is the first Dr to tell me it was a skin tag / Sentinel Pile.

He said that those were common with crohn's and they often develope when a fissure happens. The skin around the fissure somehow grows more skin and puffs out in some kind of effort to protect the fissure. I still don't get why it happens like that. But that's how it was figured out for me.

Mine doesn't hurt unless the tract of my fistula (which the CR surgeon thinks lies within the base of the where the tag grew on my anus) swells up with pus, stool fragments, fluids, etc. It hangs off the top of my anus, at the 12 o'clock position and it is normally the length & width of smallish kidney bean and basically of my normal skin color bit a little pinker; and on bad days with the fistula i have had it become VERY swollen and painful. It grows from a kidney bean to a fat olive or grape size. It gets very red too. When the fistula tract releases it takes a few days for the tag to go down and the color to be more calm.

Please let me know if you have any other questions, i hope i can offer some kind of help to you

Take care!
09-26-2012, 06:09 PM   #10
Lil Beak
 
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My daughter experience with aza has been good, she is now in clinical remission.
Catherine, that is great news!

Did she ever have abscesses and/ or fistulas?

Thanks for sharing
09-26-2012, 06:12 PM   #11
Lil Beak
 
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Earnellzwifey, one more thing:

The collection of pus they found was the abscess. It was a separate issue from the skin tag, but happened to be right in the same area. I don't think i was too clear in my reply about that part.

And my WBC was a little elevated that day they did the CT scan, in the 11'000's. Normal is 8'000 according to my lab.
09-26-2012, 10:18 PM   #12
Earnellzwifey
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thanks lil beak that information was great. the reason that they admitted me is because my WBC was at 18000 and I was taking flagyl 3 times a day already. They now have me on IV antibiotics. They do know that I have a hard to kill e.coli infection in my urine but they do not think that is the main cause of why my count is so high. 2 weeks ago they said it was gone and then the other day they said it was back so I and so confused right now. the ct scan results only said i do not have a blockage and my skin tag is in the exact same spot as yours. They were more concerned with my upper abdomen and I do not think they looked that far down.

Mine is about the size of a bean also and when I poo more it does swell and hurt. my gyno said it was a hemmy and my GI said it was a skin tag. He did look at my hemmies during my scope last week so I am wondering if it was an abscess there would he be able to see it with the scope or could the puss collection be under the skin.

Did the steroid cream seem to help it any?

I am also waiting in my biopsies to come back because the only thing found on my scope was inflammation in my descending colon.

Anyone else with an idea about this you are more than welcome to chime in. sorry to post hog lil beak...lol
09-26-2012, 10:19 PM   #13
Catherine
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Sarah's crohn is further up. No abscesses and/ or fistulas.

She hasn't noticed any side effects from the medication.
09-26-2012, 10:21 PM   #14
Earnellzwifey
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oh yeah thanks for the info on the fissure causing them. I get fissures on my anus often and I was in so much pain when it first formed I had my DH hubby lance it to get some relief. He poked like 10 holes in it to drain it out and I keep it clean as possible I hope it did not get infected.
09-26-2012, 10:32 PM   #15
Lil Beak
 
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thanks lil beak that information was great. the reason that they admitted me is because my WBC was at 18000 and I was taking flagyl 3 times a day already. They now have me on IV antibiotics. They do know that I have a hard to kill e.coli infection in my urine but they do not think that is the main cause of why my count is so high. 2 weeks ago they said it was gone and then the other day they said it was back so I and so confused right now. the ct scan results only said i do not have a blockage and my skin tag is in the exact same spot as yours. They were more concerned with my upper abdomen and I do not think they looked that far down.

Mine is about the size of a bean also and when I poo more it does swell and hurt. my gyno said it was a hemmy and my GI said it was a skin tag. He did look at my hemmies during my scope last week so I am wondering if it was an abscess there would he be able to see it with the scope or could the puss collection be under the skin.

Did the steroid cream seem to help it any?

I am also waiting in my biopsies to come back because the only thing found on my scope was inflammation in my descending colon.

Anyone else with an idea about this you are more than welcome to chime in. sorry to post hog lil beak...lol
I don't mind your questions on this thread at all. I was hoping that starting a thread would start some dialogue between me and anyone else who needs help. It's all a community. But now that I think about it, if you want a better chance of getting more answers from others who have been through your situation or anyone else with info, then starting a new thread for these questions might get that done better.

As for the steroid cream, I was prescribed Anucort suppositories. At first I think they were helping to perhaps take some swelling down in the anus as a whole, and the fissure stinging pain was lessened, but it didn't reduce the size of the skin tag at all. I stopped taking the suppositories after a few weeks because it wasn't helping anymore. That's when it was clear something else was going on, the abscess it turned out was to blame.

I believe the CT scan would have picked up on any abscess you had in that area because that is like the gold standard test for finding infectious fluid collections. I wonder what could be causing the high WBC you have. Could it be the e coli in the urine thats still in your system? Are they going to run anymore test? Do you have pain anywhere?
09-26-2012, 10:43 PM   #16
Lil Beak
 
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oh yeah thanks for the info on the fissure causing them. I get fissures on my anus often and I was in so much pain when it first formed I had my DH hubby lance it to get some relief. He poked like 10 holes in it to drain it out and I keep it clean as possible I hope it did not get infected.
You are soooo brave! OMG, I don't think I could go through a home-lance job of the skin tag!! Did anything come out of it when you did that?

Well I'm glad that it worked for you at the time. You would know if the tag was infected from that. It would look really bad I presume. What does it look like right now?
09-26-2012, 10:57 PM   #17
Earnellzwifey
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The pain was just that bad, I could not take it anymore. with me being black it is a little harder to tell the color. I have been in the hospital since Monday and it has not been looked at since then. it is sore I know that much and it feels like there is a lump or knot in it.

on a TMI note my anus area is really black so the tag is really dark.
09-26-2012, 11:02 PM   #18
Lil Beak
 
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You gotta get someone to look at it while you are in the hospital. From what I have heard, skin tags shouldn't really hurt. Bothersome at times, yes. But not painful like a hemmorhoid.

Keep me updated on how you are doing you are in good hands at a hospital. Sometimes it's the best place to be for your health.

I hope you feel better soon and can go back home.
09-26-2012, 11:24 PM   #19
Earnellzwifey
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Thanks I will ask my GI to check it for my when he come to see me tomorrow. He was off today and sent a different GI in to check on me who was no help at all. all he said was I will let your dr handle things. He could have not come if that was all he had to say.
09-27-2012, 10:34 AM   #20
Lil Beak
 
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These doctors can really be insensitive. Don't they ever have health problems? How would they like to be treated like that?! Geez. Well i hope you get your G.I. to see you soon today!
09-27-2012, 06:50 PM   #21
Earnellzwifey
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here it is almost 7 p.m. and still no GI or the internal med dr that admitted me. did see a cardiologist today for a major angina attack last night but thats it. will update when ever they show up. I got my list o' questions waiting for them.
09-27-2012, 07:12 PM   #22
Earnellzwifey
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well GI doc finally came in and said that all my biopsy showed self limiting colitis. He does not think my crohn's is very active right now. Kinda confused but he did say that my urine looked horrible so most of my pain might be coming from the UTI. I now have a foley cath in place and I must say I do feel better. i guess the remicade and pred is working. He still not worried about the skin tag but oh well I will just keep an eye on it.
09-27-2012, 11:19 PM   #23
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I'm so glad the G.I finally came to see you :

I have never heard of "self limiting colitis". Did he explain what that is?

And are they going to keep you in the hospital for very much longer? If it's the UTI that's the trouble then I hope the I.V. Antibiotics have helped you to feel better with that. Do they know if the UTI and the colitis are connected at all?
09-28-2012, 01:17 PM   #24
Earnellzwifey
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No he did not explain what that meant but I will ask him today when he comes in. They are unsure about the UTI and what is causing it. I have been on IV antibiotics and my WBC is still a little off. Personally I think I have a fistula that keeps adding the bacteria into my urine, but that is MHO.

He did tell me that he was going to cut me back to 40 mg of pred and he okay'd me to get my remicade infusion today so I guess the infection is improving. I have been able to eat soft meals for the first time today and I keep it down so that is a good sign also.

Hope to make my great escape soon. Ready to go home
09-28-2012, 01:37 PM   #25
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It all sounds like a better day for you now. I am happy for you! I hope you get to feeling better soon, and that you make it home for some real relaxing. It's always nicer to be at home in the end (but only if you are well enough of course )

Take care!
09-28-2012, 02:39 PM   #26
TwinkleToes
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Hi Lil Beak and welcome to the community! Thanks for joining and sharing your story. However, I'm afraid I have a couple pieces of news that you might not like. I say this from a place of support as I sincerely want nothing but the best for you and to get the care you deserve:

1. If you have a fistula, I'm afraid you don't have mild Crohn's Disease. You actually have a severe kind.

2. If all you're on is the Colazal, that is nowhere near a powerful enough medication to treat fistulizing Crohn's disease.

I suggest:

A. Do you have a regular GI that you see routinely? If so, are they aware of the Fistula and that you're only on Colazal? If you don't have a regular GI, get a referral and appointment ASAP. They'll probably also want/need to evaluate your small intestine for any disease.

B. Check out our treatment section and begin to educate yourself about some of the more powerful treatment options for Crohn's disease. Stay our of the 5-ASA subforum, they aren't what you need.

It's imperative that you get on a proper treatment regimen soon.

We're here for you.

*hugs*
Hi David -

Not to go against what you said; however, I have fistulas too, and I do have mild Crohn's according to my GI and GI Surgeon. My Crohn's in only in my colon, and therefore I am not on meds for it.

Anyway, welcome to the forum Lil Beak - I know where you're coming from, and this forum is a great resource for all of your questions and concerns!
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Dx'd Crohn's disease of the terminal ileum and colon.

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09-28-2012, 02:49 PM   #27
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Hi David -

Not to go against what you said; however, I have fistulas too, and I do have mild Crohn's according to my GI and GI Surgeon. My Crohn's in only in my colon, and therefore I am not on meds for it.

Anyway, welcome to the forum Lil Beak - I know where you're coming from, and this forum is a great resource for all of your questions and concerns!
Thank you for your input TwinkleToes (cute name )

I have been told by my G.I. several times that my Crohn's is very mild as far as what he sees on the colonoscopy as well as the fact that i tell him i never experience pain with the flares, only diarrhea (only been bloody during the one bad flare i experienced a few months back, and in that flare i was going about 8x a day at max) and sometimes a low grade fever when it's really bad (this also only happened with that one bad flare I have experienced).

Since getting the abscess -turned- fistula, he agrees that a more agressive drug should be next for treating that, along with the seton placement. This possibly makes me a more severe case in the extra-intestinal manifestations of crohn's, but i don't think it warrants me being considered an all-around severe case now. But i may just be telling myself what i want to hear, because being told i am "severe" is certainly scary... But David was coming from a place of support when he shared that input with me. I am appreciative of it, and more aware of the seriousness of Crohn's and all it's issues now.

I'm hoping that i don't get too caught up in the terms "mild, moderate, or severe". I just want to keep myself as healthy as possible and as long as i am doing that, then i can at least be hopeful that the level of symptoms and disease that i have currently shouldn't really ever get worse.


I love the forum. Best support i have encountered since all this started for me a few months ago. My friends and family have all been great, but they just can't relate or understand it at the end of the day. Thank goodness for the forum family!
09-28-2012, 02:55 PM   #28
TwinkleToes
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I completely understand what you're saying. While I've been going with the "I have mild crohn's" saying for the past two years, I noticed recently that things have changed a bit in terms of my symptoms - but they are pretty much the same as yours. One thing I have found to be a huge help is probiotics - more specifically Green Vibrance. While I'm not taking it now, I remember having the most luck with that.
09-28-2012, 05:05 PM   #29
KWalker
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I'm with you TwinkleToes and Lil Beak. The onlyproblems I have with my crohn's are abscesses. I haven't touched medicine since 2010 and I have had problems with abscesses but no other crohns related problems. My colonoscopy shows active crohns but I certainly don't feel like it.

Unfortunately my current G.I. sucks so I got a referral to see a new one but can't get in until January but I'm starting to wonder if it's worth it to go back on a maintenance medicine to avoid prevent complications and I was told that the unfortunately the abscesses will continue to come back without being on meds. It just sucks that they all seem to carry worse side effects than crohn's itself.

I know exactly how you feel with the mild,moderate,severe crohns because (like you said as well) we may not feel like a severe case but with problems like abscesses/fistulae there has to be something going on in there, so I'm not sure what my plan of action is going to be yet but I hope your meds work for you!
09-28-2012, 08:59 PM   #30
David
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Not to go against what you said; however, I have fistulas too, and I do have mild Crohn's according to my GI and GI Surgeon. My Crohn's in only in my colon, and therefore I am not on meds for it.
I like when people go against me What I say certainly shouldn't be taken as truth as I have ALOT to learn and want nothing but the best information presented. As a community, questioning each other is a great way for all of us to learn as long as we do it in a supportive manner which you did. Thank you for that

I do however stand by my assertion that the OP has severe disease. However, I should have said, "If you have fistula and abscesses" (sorry for not doing so) since not all fistula are caused by abscesses. My source:

Mild to moderate disease

The patient is ambulatory and able to take oral alimentation. There is no dehydration, high fever, abdominal tenderness, painful mass, obstruction, or weight loss of more than 10 percent.

Moderate to severe disease

Either the patient has failed treatment for mild to moderate disease OR has more pronounced symptoms including fever, significant weight loss, abdominal pain or tenderness, intermittent nausea and vomiting, or significant anemia.

Severe fulminant disease

Either the patient has persistent symptoms despite outpatient steroid therapy OR has high fever, persistent vomiting, evidence of intestinal obstruction, rebound tenderness, cachexia, or evidence of an abscess.

Remission

The patient is asymptomatic OR without inflammatory sequelae, including patients responding to acute medical intervention.
What is the reasoning of your doctors not putting you on any meds because your disease is only in your colon?
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