Feeling Hopeless

Well, lets see. I was diagnosed 8 years ago.

Went in and out of remission, but never really had a bad flare before this one.

It started last April, the bleeding, the cramping, the joint pains..

My urgency wasn’t too bad… maybe like 2-4 times a day, and usually always before 10am. Usually when I had a flare up, I just needed to take canasa for a couple of weeks, and then it all cleared up and I’d be back to normal.

Anyway. It’s been almost a year now. After my colonoscopy in August, my Dr. said nothing too bad, just a little proctitus. I said, “really? because I’m still bleeding.” He said, that’s normal after a colonoscopy, keep in touch if it doesn’t clear up. 2 weeks went by and I went back into his office. Started anucort, which I believe is just a steroid suppository. No results. Started Rowowsa. No results, and I hated it. It hurt like hell whenever I used it, plus it was extremely embarrassing. Needless to say, I don’t know how anyone can maintain a sex life after being in a flare for so long. The last thing I feel is sexy. Can you manage a normal sex life with a flare?

Started prednisone. 60mg. And was also advised to start smoking medicinal marijuana. Oh, I was also put on Xanax to relieve the insufferable amount of anxiety I feel over having this disease. I was bouncing off the walls, high and eating my face off. I still only managed to gain a pound. Only…. 10 lbs would have been nice. I felt better, I was working out, my joints were no longer hurting. Then we lowered my prednisone and all the symptoms came back. My Dr. then talked to me about Imuran and I freaked out. I decided it was time to take matters into my own hands and see what alternative medicines I can try.

I tried a nicotine patch, which made me sick as a dog.. I tried nicotine gum, which was still pretty gnarly, and then I tried the E-Cig, which was as good as useless. THEN, after thinking I had UC for the past 8 years, my Dr. told me I have Crohns. This was news to me. As I’ve read that nicotine showed positive results for UC but negative results for Crohns. Why then was I advised that nicotine was a viable option?

I started seeing a holistic Dr. She does acupuncture, which seems to give me only temporary relief. She also put me on some kind of “remedy” which she will never explain what it is. I noticed several changes from the holistic Dr. More energy, less bleeding, better mental clarity and THREE TIMES as much urgency. I’m not sure at this point which I prefer.

I packed up my life, took a medical leave from my job and moved to a ski town, where I thought that being out of the city and being in the nice clean air would heal me. Boy was I wrong…. There’s no use living somewhere beautiful when all I see is the bathroom door…I also weened myself of prednisone without being in contact with my GI Dr. Afterall, my new Dr was the homeopath.

I started SCD last week. So far all I’ve accomplished has been loosing more weight with little changes in my urgency. My eyes are raw from crying. My face has some kind of crazy rash that I was told is from long term prednisone. And I have these weird sores on my arm pits which I’m also guessing is from the prednisone.

My symptoms are always worse in the morning. Heavy BMs in the morning. Usually formed. Not hard by any means, but not loose. Each BM feels like I’m giving birth out of my ass… sorry to be so crude.. but come on.. it’s a crude disease. After the birthing session, I’m ok from about noon onwards. After lunch and dinner I have cramps.. Then at night I get urgent gas. At this point, I’m not even sure what is coming out of me. It’s like a clear, mucus blood thing. Not a terrible amount of blood at all, but it’s like 2-3 times an HOUR of this urgency. I also wake up every hour usually with this same kind of urgency but no significant amount of stool.

I CAN’T REMEMBER THE LAST TIME I’VE SLEPT THROUGH THE ENTIRE NIGHT.

I have a flight back home in a couple of days to go back to my Dr. and have the long hard talk about immuno suppressants.

Maybe I’m doing the SCD wrong. I don’t know. All I know, is I can’t keep feeling like this. I’ve tried to get on top of this disease and I keep getting knocked on my ass… literally. I’m depressed, I’m lonely, and I feel trapped.

I am scared to try the immuno suppressants. My Mom thinks Remicade is going to be my savior drug, and all I can think is that I am way too fu&!$%ng young to have this infusion drug put in me. It was hard enough to accept mesalamine as my forever drug, now I have to add another to my regime?


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6 Responses to Feeling Hopeless

  1. Vicki Thomas February 27, 2011 at 12:26 pm #

    Our stories are rather similar – I tried a number of different steroids with no success. This winter I was put on Imuran. So far so good. The key to Imuran is the weekly blood test – you need this done for the first six weeks to make sure the Imuran is not lowering you white blood cell count too much or affecting your pancreas and kidneys. I’m also taking Asacol – started this a few weeks ago. I was hospitalized for my recent flare and found out my colitis has gone from mild to severe. I dropped down to 115 pounds – normally at 130. I’m back to my normal weight now and back to a regular life. I can 100 per cent empathize with you. If the Imuran doesn’t work for me, my next step is Remicade. I know these drugs sound scary, but you have to trust your doctor. I don’t do SCD, as an endurance athlete, I’ve chosen to go the medical route. But I do avoid gluten and dairy, as well I only eat meat at supper time – some days I stick to a vegetarian/vegan diet completely. The not sleeping through the night is horrible – I know what you’re going through. Just hang tough and talk this all out with your doctor. Also, perhaps you can contact your Crohn’s and Colitis Foundation of America chapter and find out about a support group?
    Keep us up-to-date with how you’re doing. Thinking of you.
    vicki

  2. Monnie
    Monnie February 27, 2011 at 12:27 pm #

    I, too, was hesitant to take immune suppressing drugs, but after my UC progressed and stopped responding to other treatments, Remicade was my last resort before removal of colon.
    I tried so many homeopathic remedies too. Some helped a little, like peppermint tea for cramps. Tried acupuncture, helped some with pain but not enough to offset the cost.
    Did lots of time on prednisone which resulted in 50 added pounds to my 5’5″ frame. Also experienced yucky side effects like acne, dry eyes, skin rashes, tooth sensitivity, etc…
    Urgency and 10-15 bathroom emergencies a day were seriously hindering my roles as wife and mother. Depression was BAD, as was joint pain. I was living on pain meds just to function at the bare minimum.
    Remicade gave me my life back! My only side effect seems to be some joint pain issues but I can deal with it. (I try to work out daily which helps with the pain.) Hitting the bathroom 2-3x daily, sleeping thru the night and non-existent urgency have been some awesome side effects. The strangest side effect–my hair is turning curly.
    Best of luck to you and what ever route you go.

  3. Paul Willoughby February 27, 2011 at 1:23 pm #

    Hi there. My symptoms are always the worst in the morning as well. I was where you are at one point – up to 20 BMs/day – not sleeping through the night. I had to go on remicade after I could no longer take any steroids and found I was allergic to 6 MP. I’ve been on remicade since 2007. I’ve met a lot of people who are helped by remicade. It is good to be nervous about it – remicade is a big time drug. You need to weigh the risks vs. the benefits. If you want to try and keep your colon, it might be a good thing to do.

    Paul

  4. Milka February 27, 2011 at 5:03 pm #

    I agree with what Paul said you have a right to be nervous about Remicade, I was too. But it was either that or removal of my colon. My symptoms were severe and that was my first flare. I too felt my choices were slim to none and I remember crying after being told about Remicade. I did decide on it and have been on it 16 months and it has totally given me my life back. My colitis wasnt all gone until being on it for 6 months….but I noticed improvements after each dose. I met a girl at my treatment center who has been on Remicade for 10 years!
    Anyways I understand all you are going thru as we all have been there. Sleepless nights, depression, tired, urgency, frequency I feel for you. Any decision you make we are all here to stand by you!

  5. Susan O'Connor February 28, 2011 at 10:12 am #

    My story is also very similar to yours. I have been flaring with proctitus for 5 months now. My Doc tried all the usual drugs that you mentioned, the last was the cort enemas. I went to the University of Chicago to see the head GI doctor. He reviewed my case and he came up with a suppository mixing mesalamine (asacol) and budesonide (cortisone) and told me to use once a day at bedtime, for 8 weeks. I have to get it from a compounding pharmacy. After one week I noticed a change for the better. Stools cut down from 5-6 to 3. Blood was gone. I have more energy and am feeling like my old self again. Before I went to UofC, my gastro doc was threatning me with Remicade and I did not want to do it. If this medicine didn’t work the other thing he told me was to try smoking 3 to 5 cigarettes a day. I used to smoke. You can’t use the nicotine patch, you have to smoke regular cigarettes, not medical marijuana. The doc said they don’t know what ingredient in cigarettes it is that works, but it’s a proven fact it cures UC. I used to smoke and over the years whenever I tried to quit I had a bad flare. I was not keen on starting up on the nicotine train again, so I am glad this is working. Perhaps it will work for you as well. I hope you get some relief soon.

  6. Pooper Stooper March 8, 2011 at 11:38 am #

    Thank you all for your comments. I’m finally learning how to use this site properly! I brought all of the issues to my Dr. I’m back on 60mg of prednisone and have started Imuran. I know it’s going to take alittle while to start up, but we shall see. I’m at least feeling less feeble from being on the prednisone.

    My Dr. told me that Remicade is around 38k without insurance. How do people afford that!! Raises all of the angry issues I have with American Health care…

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