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Any Female Perspectives on J-Pouch Surgery?

Katya fullIntroduction:

Hi! My name is Katya. I’m a 26 year old artist and dog lover living in the South East. I’ve had UC since I was 19. I’m allergic to most of the medications for this disease and right now feeling surgery more imminent than ever. Would love some female perspectives about surgery…
This is a past post about my allergies to Remicade, Humira, and Azathioprine from Dec 2011: http://www.ihaveuc.com/scary-remicade-experience/

Some more about me:

I make paintings and have dabbled in stand-up comedy. I have a very multi-cultural background, with family across the globe and have been lucky to travel to visit family since I was young. Dogs help me through tough times, and I have a soft spot for mangey mutts. Hiking with my dogs is the ultimate.

Symptoms:

I’m currently having the worst flare up in at least 5 years, or maybe ever. BMs up to 25x a day, though it’s hard to keep track. Sorry for the graphic details, but my flare-up stools range from weird mucus and blood pellets to split pea soup looking mush to formed BMs that are soft and ochre colored, sometimes with mucus and blood. Sometimes there is just mucus in the toilet. All stools feel pretty urgent. I haven’t had a colonoscopy since January 2011, and at that time I had just proctitis.

What scares me right now is that I don’t have good insurance until next January, I don’t have a relationship with a doctor where I live, and my case is complicated because I am allergic to Remicade, Humira, and Azathioprine.

After turning 26 in May and losing awesome coverage from my folks, I got on my husband’s insurance, but it barely covers anything and the deductible is $3000! I had been doing so well for 2.5 years that I thought a few months on bad insurance wouldn’t be a big deal as I have been medication free for some time. Also I moved to the South East from NYC and haven’t seen a GI in over a year. I had been managing my UC for 2.5 years with the SCD diet with great success, and this flare up came out of left field. Actually, it started at my wedding this summer. My usual tricks to stop it in its tracks haven’t been working (SCD intro diet), so I started taking some left over Prednisone. I’ve been on 40mg for over a week and barely see any improvement, still running to the bathroom 6+ times when I first wake up and at least 10 – 20 times a day total. I also restarted Apriso, 8 pills a day, and am trying to use Mesalamine enemas but can’t hold them in.

There’s lightly less blood in the toilet, but the BMs are keeping me up at night. I’ve been eating early stage SCD foods for weeks now with little improvement. I have a new GI doctor’s appointment at Emory in 3 weeks, it was the soonest available when I called weeks ago. Till then, I’m doing all in my power to avoid the ER by staying really hydrated and sticking to soft, bland foods like chicken soup and some fish. I was hospitalized following my initial diagnostic colonoscopy 7 years ago, but otherwise have been lucky and haven’t had to go to the hospital.

I do feel guilty self-prescribing the prednisone, but I didn’t feel I had much of a choice. I’ve taken it so many times in the past that I feel confident about tapering it, controlling side effects, etc….

Any Female Perspectives on J-Pouch Surgery?

This is the first time in a long time that I have been really considering surgery. Seeing as I’m not responding to Prednisone and Apriso, I am allergic to biologic medications, and also allergic to Azathioprine (6MP), I don’t see many options. I’m willing to try Cyclosporine for a short period, but with my history of bizarre drug reactions, I am not interested in playing around with any new novelty medications.

When I first considered surgery in January 2011, after a terrifying Remicade drug reaction http://www.ihaveuc.com/scary-remicade-experience/, a really great IBD specialist at University of Miami gave me a real talking to about the risks. He stressed that the surgery is particularly complicated for women.
The doctor said that infertility is a real risk from the J-Pouch surgery.

Also, it can make intercourse painful because the anatomy down there shifts.
To top it all off, according to the doctor, some large percentage of J-Pouch patients still need medication for the rest of their lives because of Pouchitis.

I would really love to hear from some females that have had the surgery.
Did you have trouble becoming pregnant since having the surgery?
Did the surgery make intercourse painful?
These are embarrassing questions, but I know these issues would have a great impact on my quality of life. I’m recently married and would like to start a family in the next decade…

And to both men and women who have had completed surgery, do you have to take medications and/or deal with Pouchitis?

Does anyone have experience with Cyclosporine?

Living without medications and feeling great has been a gift the last few years, but the constant threat of a flare-up is something I could easily learn to live without! I think everyone with this disease is a survivor in so many ways. The symptoms of IBD are not pretty and are generally regarded as taboo, but we have to keep on keeping on. Our disease is often “invisible”, so people don’t even realize how we suffer running to the bathroom, dealing with scary medications, losing organs, losing sleep. I commend everyone with this disease that has learned to keep their chin high even through the worst flares!

And thank you to Adam for this site, which always cheers me up when bathroom horror has kept me isolated!

Medications:

Currently taking: 40 mg Prednisone, Apriso 8 pills a day

Allergies: Remicade, Humira, Azathioprine (6MP). Allergy to Azathioprine was a short lived drug skin reaction, about a week. Allergy to Remicade and Humira was a brutal rash that persisted for well over a year after stopping the drugs.

Tried with few results: Asacol, Lialda, Cellcept

Helpful before a flare gets out of control: Canasa, Foam enemas, Mesalamine enemas, hydrocortisone enemas

Supplements/Lifestyle: Calcium + Vit D, L-Glutamine, Saccyrmces Bouillardi, Yunnan Bayou, Turmeric, dairy-free SCD diet

Other: I took a potent cocktail of Dapsone, SSKI and Prednisone for 2 years due to a skin reaction to Remicade. The SSKI caused thryoid problems, now I take Levothyroxine 75 mcg.

written by Katya

submitted in the colitis venting area





14 Responses to “Any Female Perspectives on J-Pouch Surgery?”

  1. Tom from Northampton
    TomOctober 10, 2013 at 5:15 am #

    Hi Katya

    Sorry to hear you’re not doing well at the minute.

    I can’t comment on the Jpouch as i’m only 33% of the way there. Had the 1st of 3 surgerys in May this year. I have a temporary ileostomy (may become permanent if i choose not to go through with the jpouch)
    I’m feeling much better being of the drugs but because I still have my rectum (isn’t removed untill the 2nd surgery) im still experiencing flare type symptoms. greatly reduced however, but still a pain in the butt.

    As far as i know from my research, people with Jpouches don’t generally have to take maintenance medication to prevent pouchitis and only require antibiotics (usually in hospital) to get a flare of pouchitis under control.
    As i’m sure you’re aware there are plenty of jpouchers on this site that will be able to answer your questions better than I can.

    The only other help i can offer is my experience of ciclosporine. Last year when hospitalised with a massive flare, steroids weren’t working so i was put on IV ciclosporine which after a few days got it under control. I stayed on the oral tablets for 3 months afterwards. As for side effects, i can’t really comment because at the same time of ciclosporine i was on Mezavant (a 5ASA drug like apriso), 40mg pred, 100mg 6MP, omeprazole and high blood pressure medication (hypertension possibly caused by ciclosprine but being on 26 pills a day its hard to pinpoint what caused it). Ciclosporine for me was my wonder drug which got me out the flare and gave me time to make the decision to go for surgery.

    If you have any more questions about it let me know.

    Good luck

    Tom

    • Katya
      KatyaOctober 11, 2013 at 8:16 am #

      Hi Tom,

      Thanks for your input. It’s awesome your feeling better after the surgery, and after 26 pills a day I’m sure it’s a welcome relief to be off medications. I’ve been on multiple drugs (8 drugs, not sure the amount of pills) at a time too, it feels like the side effects are exponentially worsened when you pack em all on like that. I’m glad to hear Ciclosporine was effective for you, since it’s definitely on my radar right now. I’m slowly but surely responding to the Prednisone (up to 60 mg) for the time being, and will see my new doctor in 2 weeks to discuss my options.

      Thanks again for weighing in. Keep us posted about the surgery and I wish you all the best!
      -Katya

  2. AdamOctober 10, 2013 at 7:03 am #

    Hi Katya,

    Not sure if you’ve already checked it out, but you might like reading up on some of the “pregnancy” stories here on the site. Here’s the link for that:

    http://www.ihaveuc.com/category/colitis-stories/ulcerative-colitis-news/pregnant-with-uc/

    Best to you,
    Adam

    • Katya
      KatyaOctober 11, 2013 at 8:17 am #

      Hi Adam,

      Thanks for the link. Pregnancy/fertility issues are a major concern with female UCers, so thanks for dedicating a whole part of the site to that!

      -Katya

  3. AmberOctober 10, 2013 at 7:52 am #

    Hi!

    I am so sorry you are dealing with these hard questions at such a young age. I can comment on a few things. I had j-pouch surgery in 1999. I have never had pouchitis. My lady parts were not affected at all. I had two uneventful pregnancies and two spontaneous vaginal births, although my second baby was 5 weeks early (she is completely healthy).

    Yes, there is a risk of infertility. However, there are many things that surgeons can do to minimize this risk. In my case, I would have died had I not had the surgery, so it wasn’t much of a conversation.

    About 32% of people develop pouchitis. Not all of those go on to have chronic pouchitis, but, yes, some do. But some also have 1 bout and never have it again.

    Oh, and the sexytime for me is just fine.

    I know your insurance situation is difficult, but I think a talk with an allergist who has experience with patients with multiple drug allergies or with IBD might be helpful for you too. I also had not-so-great insurance. The deductible was insane, but I paid the hospital and the surgeon in installments. My surgeon eventually wrote a huge portion of his bill off. The hospital got $10/month for a long time. :)

    Best of luck in your decisions. I hope some women who have had babies while dealing with ulcerative colitis can chime in here. That presents some challenges too.

    Very, very best of luck to you in your journey!

    • Katya
      KatyaOctober 11, 2013 at 8:23 am #

      Hi Amber,

      I really appreciate you taking the time to let me know about your experience. It’s so reassuring to hear that your surgery effectively “cured” you and everything else remained in order.

      Luckily I’m responding slowly but surely to Prednisone for the time being. I hate the stuff and always vow to never take it again, but it buys me time before my coverage changes in January. For now I do have an appointment with an IBD specialist at Emory in 2 weeks, and we will discuss my options.

      I hope I can get back to remission and avoid surgery, but your story really makes surgery a less terrifying prospect. Thanks so much for your thoughts.

      -Katya

  4. Jeff O
    JeffOctober 11, 2013 at 6:24 am #

    Hey thanks for writing. I just posted a week ago the “Engaged to a Beautiful UCer” thread and I know that, God willing, when we’re married…your post will be very helpful if we ever needed to go the J-Pouch route. Thanks for having the transparency to write. Do NOT lose hope…its ok to be afraid, but let hope be stronger. Even if we have to accept changes that humble us, its accepting them that will keep them from conquering your joy. Peace to you, sister.

    • Katya
      KatyaOctober 11, 2013 at 8:39 am #

      Hi Jeff,

      Thanks for commenting. I just read your post, and have to just say that it was really brave to reach out on this site. I know my husband bears his own pain in this situation, and he sometimes tries to keep it to himself so I don’t feel guilty or overwhelmed. He has really benefited from having a therapist to vent to about his experience.

      A combination of Prednisone, which really makes people whacko, and fear of what’s happening to my body has made me really lose my cool on occasion, and I know that’s been really difficult for my husband to witness. In the end, communication has really brought our relationship to a deeper place. There are times your fiancee might seem like a stranger because fear and side effects take a very real toll, but try to think of these times as a test of your commitment.

      Don’t forget to take care of yourself and tend to your own emotions as you help your fiancee. Looking to support groups like this site will certainly help you cope with the challenges this disease can bring to a relationship.

      Best of luck to both of you,
      Katya

  5. AlexandraOctober 13, 2013 at 12:08 pm #

    Hi Katya!

    Your current situation sounds a lot like my life not too long ago. I was diagnosed with UC when I was 16 (I’m 19 now). I was initially put on Remicade along with the lovely drug Prednisone. I discovered I was allergic to the remicade after having a severe and terrifying allergic reaction to it during an infusion. I was then put on a higher-than-normal regime of Humira, which only worked for about 4 months. I really hated taking it anyway. As you know, the shots are very painful and made me dread the day that I had to inject them.

    So I was left taking prednisone to try to tame my symptoms while my doctors figured out what to do next.

    So then last October I had a colonoscopy and when I woke up my GI doctor bluntly said, your colon has to come out. At first I didn’t know how to react. There was no way I was going to live in the pain I was in though so I just said okay, it’s coming out! My first surgery was in November and I had to have an ileostomy for a few months. It was not the best thing in the world having a bag attached to your side but I got used to it after awhile. Then in February I had the 2nd surgery to reattach everything and get rid of the bag. Recovery was the most difficult in the first month. It felt like I was never going to get better and I was pretty miserable.

    I would say after about 3 months I was so much better. Its been a year now and I can’t even tell you how much my life has improved. I am pain free, medication free, and so happy. The only noticeable difference is that I go to the bathroom more than the average person, about 4-5 a day, but I always did anyway having UC so its not a problem at all. I have only a few small scars but they are healing nicely. Surgery is definitely scary but I can honestly tell you it was the best thing that I could have done. Just stay positive and know that you are not alone!

    Much love,
    Alexandra

    • Katya
      KatyaOctober 15, 2013 at 9:11 pm #

      Hi Alexandra,
      Thanks so much for sharing your story. I’m so glad the surgery has been successful for you, and hearing your positive outcome makes that prospect a lot easier to stomach. Keep on with your newfound good health!
      Best to you,
      Katya

  6. JordynOctober 15, 2013 at 5:12 pm #

    I am currently 6 days out of the 2nd surgery. First surgery was very manageable I felt. This one was/is brutal, but I have a lot more confidence that it will go away. I turned into a nutcase before surgery 1, emotionally 2 has been much easier. I’ll have the third in January.

    We has sex quite a bit after I got my mojo back after #1. It was all just like before, no pain, everything worked;) I can keep updating you as I go through these stages.

    I already have 5 kids, I’m only 30, so I’m very very lucky I made the controversial decision to have kids so young. I will say my cycles have been extremely disrupted and my OB could tell by ultrasound just a couple weeks ago I am not ovulating….hence screwy cycles. I will bring up a point you didn’t that it is extremely difficult to parent during severe flares. My surgeon said IVF would never be a problem. You could always carry a pregnancy to the same pre-surgery ability you had to before. Obamacare is supposed to force private insurance to allow infertility benefits in one of the roll outs in the next couple years.

    Difficult decision, and even as much side splitting pain that I am in on day 6,..I have not regretted anything.

    • Katya
      KatyaOctober 16, 2013 at 1:38 pm #

      Hi Jordyn,
      Thanks for taking the time to write to me. I hope your recovery is going well. I appreciate you sharing your experience. I know that the prospect of surgery makes me super emotional, I can’t imagine what you are going through. You are very brave to face this and I hope for minimal complications in your procedures.
      That’s really interesting about the IVF, and definitely is something I will look into if I end up going the surgery route and fertility becomes an issue. I haven’t even made up my mind about whether I want kids, but I like knowing I have the option… I can only imagine that parenting with a UC flare is the toughest job in the world…

      Anyway, thanks again for writing to me and keep us posted!

      All the best to you,
      Katya

  7. Emie
    EmieOctober 15, 2013 at 9:08 pm #

    Hi Katya,
    I had the jpouch surgery about 10 months ago and every part of my life has improved. I have posted all of my stories here on this site if you’d like to read them. I made the decision one year ago to have surgery, I let the fear of it all hold me back for a long time, but once I finally started the process I felt a sence of peace that finally my battle was going to be over. I have had one bout of c-diff which was no big deal really compared to the hell I had been through for 9 years. I had one child prior to surgery and since then my husband and I have decided to go the sterilization route rather than have another child, so I can’t help you out there but I have read and been told by my surgeon that pregnancy is possible and probably, you should just wait one year post surgery before becoming pregnant. The only thing I have noticed since surgery is that I have menstrual cramps now that are a bit more uncomfortable but only for about a day or two. I was told that it takes about a year for your hormones to get back in order so that is probably it. Sex life is better than before, no worries of having to go to the bathroom in the middle of things anymore. Personally my life has improved so much in the last year and I am so glad I decided to have surgery. If I can help you with anything please let me know. Best of luck to you. As another post said, hospitals are always willing to work with you on payment, they are just happy to get any amount of money, so don’t let that hold you back.
    Emie

  8. Katya
    KatyaOctober 16, 2013 at 1:42 pm #

    Hey Emie,
    Thanks for writing. I found some of your old posts, and they were really informative.
    It’s really inspiring that your life has improved so much post-surgery. It’s also really helpful to hear about some of the complications, effects on hormones, etc so I can get a better picture of the changes to expect.
    I’m responding to the Prednisone finally, so that will buy me time till my insurance changes in a few months. I’m still hoping I can get out of this flare up and back to my remission I maintained with diet for the last few years. However, all the feedback about surgery has really helped prepare me for other options and I’m really glad to have this knowledge going forward.
    Thanks for sharing and I hope things keep improving for you!
    Katya

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