Help in Ohio – Rachel’s IBD Story

Intro:

Hello all. I am i have been diagnosed with Ulcerative Colitis x 22 years, as I was just 15 years when initially diagnosed with inflammatory bowel disease. The past 7 years my disease has remained very active. I have been on several doses of prednisone and biologics.

Some more background about Rachel:

I have three kids 8,9, 12, and married, which my husband is supportive, but I cannot help but feel bad as I am so fatigued from the constant flare ups. I am a former critical care RN, now blessed to be working from home, as my disease progressed so I cannot work in the hospital, work 12 hour shifts.

Symptoms:

I am currently having 20 plus bowel moments daily, liquid, pain and nausea. I feel so tired I cannot get up. I feel like a prisoner in my house…I can’t leave, grocery shop, etc. I have tried Humira ( sent me into the hospital for a week due to a reaction), Imuran ( reaction), remicade(reaction), just had my 5th dose of entyvio. The entyvio I reacted to as well, severe joint pain, 40 lbs of water weight. I am also Lialda, cortifoam, mesalimine enemas, and not Lasix (diuretic ) and potassium were added.

Rachel’s Story:

I take probiotics, cinamon, fish oil, calcium and vitamin D,Bentyl, digestive enzymes and phenergan. I also take Lialda, dexilant, Zantac, topi max, relpax for headaches, Lasix and potassium. My doctor now wants me to see a cardiologist for the swelling and rule out heart issues than start Simponi, another biologic. I am very Leary of anymore of these medications as I have reacted so poorly. Gi says the other alternative is to have my colon removed. I want to see if there is anyone else out there who has reacted with biologics the same way I have, or if anyone out there decided to have their colon out. I want my quality of life back. I want to feel like a good mom to my children and a good wife to my husband. I want to just be able to leave the house when I want, not as my stomach permits. UC has changed my life as I cannot work outside the home, my kids see me “sick” a lot, my husband is forced to take on more and that m akes me feel bad. I am so tired of colonoscopies too. But it needs to be done. My main concern with the next step now, if I am clear for yet another biologic, I don’t think I want to go through it. On the other hand, I don’t want to have my colon out. I have tried diet changes before and nothing really helped. I am hoping there is someone else like me who found something that worked. I appreciate anyone reading this. I know it could be worse, but this disease has taken a lot away from me…I know I am not the only one who is going though tough times with this tough disease. Thank you for your thoughts.

Medications:

I have tried gluten free, paleo, scd diet. I get so sick with veggies and fruits, and I do want to eat healthier. The biologics scare me.

written by Rachel

submitted in the colitis venting area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

biologics, Ohio

13 Responses to Help in Ohio – Rachel’s IBD Story

  1. Tom
    Tom May 18, 2015 at 3:31 am #

    Rachel

    Sorry you are having such a rough time. Give the Simponi a go but if that doesn’t work or causes a negative reaction, surgery is definitley the way forward.

    I chose to have surgery and am so glad I did. I can honestly say I have never come across somebody who has regretted having surgery. I have only heard them say they wished they had it done sooner.

    My ileostomy is permanent as I chose not to go for a Jpouch and i’m 26. Having a bag does not affect me one bit and can hand on heart say it’s a thousands times better than having out of control UC. I eat what I want, wear what I want and do what I want and in 2 years have never experienced “tummy ache” that even non UCers experience after eating certain foods.

    All the best and keep us posted

    Tom

    • Mary May 18, 2015 at 4:22 pm #

      I am not sure if this reply goes to Rachel or to Tom–but hope that Rachel will get a chance to read. My husband has UC and I did just quickly enter his most recent story, but worried there might be a delay for Rachel to read it so I am trying anything to get a reply to Rachel. When I read that you are having 20 stools a day, have 3 children, and work at home–I felt so bad for you. I have been a witness to what my husband has suffered and I understand how difficult (that word doesn’t even fully explain it-I know) that it is. After 25 years with Ulcerative Colitis (long remissions of 5-7 yrs at a time but BAD flares when they did occur), my husband (Dan) had the 1st step of j-pouch (will be a total of 3 surgeries) on 4/10/15. We couldn’t be happier. He didn’t want to fear the future flares and side effects of the medications any more! What we learned at the hospital (Froedtert in Milwaukee) is that avg. age for ileostomy is 25-35. We were told that the no. of stools after surgery is 5-8 (we were mostly told 5-6) stools a day… but there is CONTROL and extra control can be planned with Lomotil or Imodium when need be. Dan has been gaining his weight–and strength–back and is so happy to be able to eat again. I have read stories from others who have had the surgery…and all seem to agree that it is sometimes what is necessary for both quality of life and future longevity.

  2. Rachel H. May 18, 2015 at 7:42 am #

    Thank you, Tom. I appreciate your reply. At this point I am so depressed because I want to feel better. I will be 37 next month…I am so happy to hear surgery was your way to find remission. Do you still have to take meds?

  3. UC Family Boy
    UC family boy May 18, 2015 at 1:33 pm #

    Hi Racheal,

    I don’t really know what to say other than stripping back on your diet and going forward from there. You may need more time and patience than some.

    I recently had a flare I couldn’t pull myself out of without enemas. I looked at juice breakfast which is so full of nutrition and energy boosting properties. From there I add dark chocolates and figs for energy and sweetness, and the rest of the day it’s all about how I can get prebiotic and probiotics in my diet.

    I fell off the wagon with my diet so a flare was always on the card.

    Have you considered FMT? I know for some in a similar situational you, haven’t been ‘cured’ from doing a fmt. But they have addressed the balance enough to go from talking about surgery with there doc to talking about talking 5asa…such was the results achieved with fmt.

    Most expect fmt to be an instant solution like for c.diff colitis But from my own reading, it’s a long turn plan…instant results won’t be achieved, but with a healthier diet, it can help encourage them good bugs live and prosper. We can’t assume we are invinceble and eat foods high in antibiotics (go organic) and foods high in chemical preservatives (energy wasted trying to digest…resulting in a weaken performing immune system which is easy to attack).

    I plan to reshape my immune system and than do a fmt. If genes ares as docs say, key to IBD, let’s not forget the disease is predominately a western disease with foods as processed as processes can be in this world. We have gone from growing foods on farms to growing foods in factories and labs. Doesn’t add up right?

    Let’s not forget the missing link. Certain key bacterias monitor our genes, a continued communication, a communication we have lost in IBD. Once we know the quantity required/ratio required we will find the right fmt ‘shots’.

    I only mention this as I see you haven’t written about this field of work for IBD. Might be worth looking into.

    Hope your feeling better. I managed to stabilise my health, but still lack energy (until I heal from the leaky gut from the flare)

    T

  4. Lucy May 18, 2015 at 2:13 pm #

    Hi Rachell,

    I’m a 43 year old woman with 3 kids, husband and 4 years with UC. I have never taken medication for UC despite the very painful, life changing flareups except for 2 weeks of predisone at the very beginning. I had a negative reaction to it and decided then I would try an alternative solution.After not getting any where with my regular doctors, I hired a naturopathic doctor. I began taking multi-mineral supplements, multi-vitamins, vegan protein, l-glutamine (1500 mg), Vitamin D (6-8,000 Iu), and probiotics (85-100 billion) a few times a day. I gave up all gluten and dairy except for good quality plain yogurt. Ate and juiced lots of greens and other vegetables. I cut down drastically on fruit due to all the sugar and fiber. This is the diet I still follow and luckily I have had 2 flare-ups in 4 years. Don’t get me wrong, the flare-ups were horrible but the last one was only 2 weeks compared to the first flare which lasted almost 3 months.
    I remember going to the bathroom 30+ times and thinking and sometimes wishing I’d die but it can get better. The experience changed my life so much that I became a health coach and now help others deal with these issues. And the bonus for me was that to only have I been able to control UC but I cured myself of depression and Hashimoto’s disease..all through diet and correct doses of supplements.
    Meditation is incredibly helpful in managing pain and stress. I highly recommend it.If you have any questions you can contact me at redspot1971@gmail.com
    I wish you the best. What ever you decide, please do your research.

  5. Mike May 18, 2015 at 3:08 pm #

    Hi Rachel,

    Sorry to hear that you are suffering so bad. Like you, I did not have luck with any of the UC medications besides prednisone, and even that only did so much. I would recommend finding a good functional medicine practitioner. They can run comprehensive food intolerance test, assist with supplementation, and gut repair. It took me two years of being off my offending foods, repair, and supplementation before I really started feeling better. Good luck!

  6. Talia May 18, 2015 at 4:36 pm #

    Hi , I am sure you will feel better.
    My friend was flarinf for 3 years. On SCD for 4 years. Nothing helped, not even Remicaid. Now,She did extensive research and started treating by Dr.Borordy’s protocol. Taking Rifaximin, metranidazole. Feeling Much better. He believes that UC is not an autoimmune disease, but its a response of our immune system to bacteria that we ingested. In order to reverse UC we need to clear our system of bacteria and reintroduce healthy flora. Antibiotics stopped flare in 2 wks. She is still on strict SCD diet. Excluding night shades , dairy, nuts. Hope the information is helpful.
    Good luck!

  7. jay May 19, 2015 at 4:20 am #

    Hi Rachel,

    read my posts about fecal trial. I was going up to 17 times a day before I started fecal enemas im now in remission. Dr borody makes the enemas im taking, look him up too.

    private email me if you like or want more info.

    jaygee1632@hotmail.com

  8. Jennifer May 19, 2015 at 5:26 am #

    I am also from Ohio and battled uc for 5 years-I tries some of the same meds you have with no hope-I finally had my colon removed @ Cleveland Clinic in Julu of 2014-their team made me feel as comfortable as possible during all 3 of my procedures (I have a j-pouch system) and where extremely help when I had issuses arrive @ home 3 hours away. I felt better immediately after my colon was removed and would not heisitate to do it again-now I am enjoying life and my grandchildren. Feel free to email me -good luck in your journey-I know how lonesome it seems @ times, but we are all here for you. Jennifer

  9. C. Miller May 19, 2015 at 10:04 am #

    try to find all you can about fecal implants on-line. They worked for me. Also I stay on the SCD diet forever and all good with no drugs or surgery in the future.

    I near died from all the drugs you have taken also.

  10. Rachel H. May 19, 2015 at 11:07 am #

    Thank you all. This has been very helpful. I appreciate all the support and comments :-)

  11. k May 19, 2015 at 11:21 am #

    Anyone who copes with uc for 22 years has more sheer courage that I have or ever had.

    Fortunately, I didn’t have to make the difficult decision for surgery. The crisis came during a major flare three days after I was finally correctly diagnosed with uc. The colon came out that afternoon. So I have had an ileostomy for 40 years now.

    It gave me my life back. Some challenges over the years, but nothing like trying to live with uc.

  12. Rachel H. May 19, 2015 at 4:36 pm #

    I should have said I was diagnosed at 15 with crohns, but I never was again. Since I was 20 always UC on my colonoscopies. Maybe I would have a bad day here and there, but once I hit 30, it has been a constant flare. I have had a multitude of issues ranging from weight gain, migraines, female issues, thyroid issues etc….joints. Ugh it’s like enough already! I appreciate again, all your kind words and support. Even as a healthcare provider, I never thought I would be in the place I am now. Having support with people who have dealt with this and truly understand the pain you go through is so appreciated. Xx

Leave a Reply