Pain…is it a Flare, or Something Else? And is Surgery Worth It?

Introduction:

My name is Tiffany. I am a 25-year-old middle-school math teacher. I am Mormon (LDS), and recently married (December 2011). I like reading, hiking/camping, and spending time with my family.

Symptoms:

Pain a few times a day (my intestines feel like they’re burning) but there’s no urgency to go, pain in my rectum (I have external and I think internal hemorrhoids), blood at the end of some BMs but not mixed in with the stool, and small but mostly formed BMs a couple of times a day.

My Story:

A little background: I was diagnosed with UC about a year and a half ago after having 20+ bloody BMs per day for over a month, along with a few ER trips. The condition came six months after I had c. diff. from too many antibiotics from walking pneumonia and an unexplained white blood count of 23 within a month of each other. It took a long time to diagnose because they thought it was just c. diff. again. I spent 10 months on a high dosage of prednisone along with mesalamine and imuran. It took that long to wean off prednisone because about 6 months after getting diagnosed I got salmonella and spent 5 days in the hospital. After getting off prednisone I spent about 7 beautiful months in remission and got married during that time.

About two months ago (and two months after my wedding), I got c. diff. again (even though I wasn’t taking any antibiotics) which caused a flare, and I spent an entire week (Sunday afternoon to Sunday night) in the hospital. I got on prednisone again and took 2 months of medical leave from work (I am a middle school math teacher). I went back to work 3 weeks ago and took the last of the prednisone this week. But this past week I’ve had some blood at the end of BMs that have a lot in them. It’s not mixed in the stool, and I’ve developed some external hemorrhoids which are quite painful. I don’t think I’m flaring because I’m not feeling a whole lot of urgency (just once a day), but my intestines feel like they’re burning with bad cramps several times a day to the point that I have to bite my lip to keep from vomiting. I’ve switched to a saltines, rice, and yogurt diet to keep things mild, but it doesn’t seem to help.

In the meantime, I’ve been using Preparation H both internally and externally and also sitz baths in evenings if I can. The blood is gone for the most part, but the external hemorrhoids are getting bigger and still hurt really bad.

Is it normal to get hemorrhoids after a flare?

If so, how do you control them? I emailed my doctor about it and he said if the Prep H isn’t working then I may need to have surgery to get them drained. Does this get rid of them permanently? I’m worried because right now I don’t have any more medical leave. I can’t wait until summer because we are moving to Utah (from Denver) the day after my last day of school, and my health insurance only covers places in Denver. My new job’s medical insurance won’t start covering me until the start of the new school year. Plus I don’t have a GI in Utah. Anyone know of a good one in the Provo/Orem area by any chance at all? I’d even take Salt Lake City!

So does anyone have any advice or suggestions about this? All of this has made me start thinking that maybe surgery is worth it if I can get a j pouch instead of a bag. Are there certain requirements to meet for one or the other? It’s hard to get an appointment with my GI because I can’t take off work, and I can’t get to his office in time for after-school appointments with traffic. With my insurance, the only GI’s I can go to are ones that are all in the same building or further away.

Please, help!!!

 

Where I’d Like to be in 1 Year:

Pain free and in remission. Maybe prepping for surgery?
Medications:
Currently on Imuran and Mesalamine. Just weaned off prednisone again.

written by Tiffany

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submitted in the Colitis Venting Area








7 Responses to Pain…is it a Flare, or Something Else? And is Surgery Worth It?

  1. Aida April 24, 2012 at 2:25 pm #

    Hello Tiffany:

    I suggest you try probiotics. I use them and a lot of UCers do too. They really have worked on me. I feel much better and almost
    normal after taking them for a month now.

    My sister’s acupuncturist recommended her “Dr. Ohhira’s Probiotics Professional Formula” and there is also another one called
    “Original Formula” You can look for it through Google “Dr. Ohhira’s Probiotics” It is a japanese product sold in USA by Essentials Pharmaceuticals.

    And when I took advice from a nutritionist she recommended me probiotics from http://www.natren.com which are supposed to be the best in the market. They need refrigeration and Dr. Ohhira’s do not, so you can take them anywhere.

    It is my believe that medication is good to control crisis but not to take them for ever. Have you checked the side effects of the medication you are taking? I was horrofied when I saw the list.

    When I felt I was back on track and that medication was doing me worse than helping me I stopped taking asacol (mesalamine)

    Really, I feel much better without medication than with it.

    My doc tried to give a “new” medication called Mezavant that is the same chemical as in Asacol. The difference: Asacol pills are 400 mg each one and Mezavant 1200 mg each.

    I was feeling fine, but I gave Mezavant a try to see what happened. Big mistake! It only took me 2 days to have cramping, urge to go to the toilet and worse of all I wish I had put on diapers the second day. I was at Costco parking lot and I just could not hold it. I defecated on my pants like a baby and also I got cracked skin on my hands.

    I have seen my sister for 10 years going through UC and after a lot of trials she finally got out of medication too like 3 years ago.

    Also I take vitamin D that helps with nutirents absorption, iron and acid folic for slight anemia.

    Regarding hemorrhoids my doc said to me that is not good to touch them since healing process in UCers is not good.

    In my case they were inflammed when I was in crisis but as soon as the times going to the toilet were less they started disappearing slowly.

    Another web page to get info for hemorrhoids is http://www.knowyourgut.com

  2. PeterNZ April 24, 2012 at 5:02 pm #

    Hi,
    Suggest you try “colifoam”. Talk to your doc about it. He may do a sigmoidoscope right there in the office. A colonoscopy would be a good idea. Seems to me you may inflammation at the terminus of your colon. Haemoroids can be cut out, by doctor, if you catch ‘em growing in the first day or 2. Otherwise they will vanish by themselves in a month or so. To relieve itching try “protosedyl” – much better than anything else I have come across. “ultraproct” not much good.
    Let us know how you get on.
    Good luck,
    Peter

  3. Tiffany April 25, 2012 at 1:04 pm #

    Thanks guys. I finally broke down and went to the ER; it turns out I had a perianal abscess. The stools were leaking through the colon because it had worn down and had created an infected lump in between my anus and vagina. They did minor emergency surgery, lanced it, and let it drain. They can’t sew it up again, so I have to slowly let it heal on its own and wear a pad while I keep draining out pus.

    To top it off, I got c. diff. AGAIN while I was here for the abscess, so I got admitted last night. It was hurting so bad.

    The hemorrhoids seem to be doing a bit better now that it’s all worked out with the abscess. Thanks everyone. I am going to look into everything that you’re saying.

    Have any of you had the surgery to get a j-pouch? I’m interested to hear about that.

    • Adam April 25, 2012 at 11:31 pm #

      Hey Tiffany,

      Hang in there!!

      One thing that you should check out is the UC surgery survey that was completed not too long ago.
      Here’s the link to it, and 26 UC’ers completed it who have already had surgery and many of them have had the J-pouch surgery you mentioned.

      http://www.ihaveuc.com/26-colitis-surgery-patients-survey-results/

      I don’t know how far you are to Ogden, but there is a doctor listed on the Gastro Doctor Reviews page on this site from there, you can check it out towards the bottom in the Utah section here:

      http://www.ihaveuc.com/find-a-doctor-near-you/

      Let us know how the hemorrhoids go Tiffany, and best of luck in the coming weeks:)
      –Adam

    • Catherine May 1, 2012 at 5:24 pm #

      Hi Tiffany,
      My 19 year old daughter had a colectomy and ileostomy in January. She had been in a year long flare we couldn’t get under control. She struggled through her fall semester of college. She missed a lot from being hospitalized, and was too fatigued and sick to catch up. Her GI doctor told her if Remicade infusions didn’t work she would need surgery. Well, it didn’t work, and it was the last resort, since 6MP and other drugs didn’t work. She took the spring semester off and had the first surgery. She feels so good now! She is a new person. Before surgery she told me she felt like her life was over- heartbreaking for a mother to hear! Now she is excited about EVERYTHING!

      She has been off steriods (after taking them for one year) for 4 weeks. We just saw her surgeon today and he let us know he scheduled her jpouch surgery for May 17th. She is beyond excited. He went over everthing that could go wrong- still better than hearing about possible, devastating side effects of 6MP and Remicade. Not to mention what steriods did to her body.

      And to Vicky- Good luck with your surgery. It took my daughter about 2 weeks so get used to the ileostomy bag. Now, it is no big deal, at all. I ordered her some Trendy Tops to cover the bag. they seem to be working out well.

      Being well with a bag is a million times better than being sick without one! Her motto is ‘colon free is the way to be!’

  4. Vicky April 25, 2012 at 5:48 pm #

    Hi Tiffany,

    wow- that sounds really painful! Im glad you went to the ER to get that taken care of. I just wanted to let you know that I am scheduled to have the first of 2 surgeries on May 10th. This first one is to have my colon removed, where I will have a temporary ileostomy for 6 to 8 weeks before the second surgery for the j pouch. You really should talk with your doctor or a surgeon if surgery is something you are even considering. I have really no other options since all meds I have tried, including remicade and humira have not helped with my UC at all…I have had UC for a little over 2 years with no remission. Good luck, and I hope you heal fast from surgery.

  5. Math Teacher Tiffany April 26, 2012 at 5:40 pm #

    I really appreciate all of your guys’ feedback and support. I just got home from 2 days in the hospital again – when I went in last week and got the abscess lanced and drained, I apparently picked up c. diff. as well (third time’s charmed, right?) It’s been rough to do this without my husband (he’s on a business trip to Peru for two weeks).

    But I very grateful for all of your information and feedback. And reading the link Adam posted, it seems like most people who have the surgery are happy with it. So a good talking point with my doctor!

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No matter what, colitis flares don't last forever, don't forget it:)