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Out of options for my U.C.?! Unsure of getting colectomy, any advice?.....

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Ulcerative Colitis
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Posted 8/3/2011 12:15 AM (GMT 0)
Hi,

I'm new to this site, but have an important decision to make in about 2 weeks!  I was diagnosed with Ulcerative Colitis when I was 20 yrs old and a few days into my junior year of college(2001). I won't go into all the details--it would take so long. However, after multiple hospital stays and my parents getting told "we almost lost her" (to sepsis) I had a miraculous recovery. It took months and a medical withdrawal from school for a semester, but I graduated and had no major problems for 5 years. I was on Asacol and Imuran at the time. Sometime later I got pnuemonia and a flare-up that put me in the ER. The same thing happened the next winter, so my GI doc said my meds weren't working and I had to go on Remicade injections. My family and I thought they would stop when my flare-up got better but they didn't and I had to get them every 8 weeks for 4.5 yrs. I begged to stop them after 2yrs telling the dr  they made me sick and they were so expensive. I was told they were helping and to keep taking them. Well, last summer I was so tired I kept falling asleep standing up and even when I would be working! I also noticed 3 lumps - 1 on the back of my head, under my left arm, and under my jaw.  I went to my primary dr. who did many tests, sent me to a surgeon, and warned me Remicade causes lymphoma.  3 days later I had surgery to remove the lump under my arm and jaw. Over a week later I got a call at work from the surgeon to tell me that I had malt lymphoma and to see an oncologist right away. After many scans I have stage 3A malt lymphoma and have around 7 "lumps"  but maybe more since I'm due for another PET scan. It angers me so much to find out after seeing 2 oncologists that my cancer is from taking a chronic immunesuppressent for too long (remicade). I should've been told right away this could happen. Now I'm maxed out on Asacol, taking 3 Immodium a day, no Imuran (it's an immune suppressent too), no remicade, and the other meds aren't strong enough either. Steroids aren't a good option at this point. I just had another flare-up so I see my Gi dr in 2 weeks, mainly to decide about having a colectomy.  Has anyone been in my situation? It's so stressful because I want to have kids and I'm scared if I get the J-pouch my body will just attack it too... I'm trying to avoid a bag if at all possible...  I love my job and would like to keep working....

thank u for any advice,

kari

 

Posted 8/3/2011 12:59 AM (GMT 0)
Hello Kari and welcome to HW.

Gosh, I am so sorry to hear about all you have been through! I get so sad when I read about those who have been diagnosed with a dangerous disease because of excessively using medicines designed to treat UC. I know prednisolone can also cause diabetes and osteoporosis...

You've tried (or aren't in a position to try) all the main stream meds. Before surgery, have you thought about alternative treatments? They have become quite popular on this forum lately. There's:

- combination antibiotic therapy (a couple of members are using this treatment now and are giving frequent updates on their progress)

https://www.healingwell.com/community/default.aspx?f=38&m=2088679

- LDN (low dose naltrexone)

https://www.healingwell.com/community/default.aspx?f=38&m=2129791

- FT (Fecal Transplantation)

https://www.healingwell.com/community/default.aspx?f=38&m=2135358

Then there's the SCD diet, TCM (traditional chinese medicine). Do you think your doctor will be open to discussing these?

Please stay calm and positive and let us know how things turn out. Finally, if it does come down to surgery, it isn't the end of the world. Many have had surgery and are still living their lives to the fullest.

Post Edited (MaxMilian) : 8/2/2011 7:03:01 PM (GMT-6)

Posted 8/3/2011 1:29 AM (GMT 0)
Hi Kari - Welcome!

I am so sorry to hear all you have been through. What a terrible, freightening experience. I think Max mentioned a few of the treatments that are worth trying but you should take a look at our resources thread on the top of the forum, there is a list of treatments, alternative and traditional, something on there may be helpful for you. I think the chances of conceiving after a j-pouch, while they may decrease, are still quite high if you use a very experienced surgeon. There is a woman who posts here who recently got a pouch and is pregnant, she wasn't even trying. I wouldn't assume you won't be able to have children if you go the j-pouch route, do research, speak with people on the ostomy board and consult with surgeons and see if you feel comfortable with the procedure before you decide anything.

There are a few other options you may want to look into, Wellbutrin, Worm Therapy, or Clinical Trials.

Have you been using rectal meds? Taking probiotics?

https://www.healingwell.com/community/default.aspx?f=38&m=1666318

 

Posted 8/3/2011 2:28 AM (GMT 0)
Red22

Hi Kari, welcome to the forum.

Wow, you've been through hell and back! OMG, I really feel for you.

And you are so young, and so brave! Such a tough decision to make at this time for you.

I agree with Max, he has given you some good alternative options.

IMO, whatever you decide to do, you should definitely try LDN - low dose naltrexone, as it is an immune system booster, and from all you have gone throughout the years, you really need that boost to your immune system.

LDN has been used for many different auto-immune conditions, including UC and Crohns, and different types of cancers as well.

I have read of case histories where people with stage 3 or 4 breast cancer, pancreatic cancer, and prostate cancer have been given LDN, together with some other treatment and have done very, very well.

I send you a big hug.

Let us know if there's any way we can help.


 

Posted 8/3/2011 2:47 AM (GMT 0)
WOMEN WITH JPOUCHES CAN HAVE CHILDREN!!

If you'd like to meet the hundreds of women who have given birth after jpouch surgery go to www.j-pouch.org and look in the Pregnancy thread.

I had jpouch surgery 10 years ago. It was the best decision for me after exhausting all western and eastern drugs/diets/and regimes. I have never regretted it. My life is more full post surgery than pre-surgery. As mentioned, an experienced CR surgeon is key. You can get surgeon references at www.j-pouch.org too.

Sue
Posted 8/3/2011 3:19 AM (GMT 0)
perhaps it's a good idea to get a second opinion? I can't say more positive things about the Integrative Internal Medicine/GI I just started seeing. Not sure if you have that option near you, I learned of her via my local CCFA Support Group

best to you, and a big hug
Posted 8/3/2011 3:23 AM (GMT 0)
your body won't attack the jpouch because the colon is gone, some surgeons will want to leave a bit of the rectum, don't let them do that, that does leave a small place for the UC to come back.  I don't have a jpouch i have a perm ileo (a bag) but i know that surgery gave me life back.

I didn't have all the other problems you have, so i don't know if that would affect surgery or not.

Posted 8/3/2011 3:53 AM (GMT 0)

I'm no expert, but another thing to consider is damage to ovaries from the Xrays or CT scan done to verify the integrity of the jpouch before
takedown. You may be risking dna damage to
your future children. CT scan is much worse.
http://www.time.com/time/health/article/0,8599,1818520,00.html
The technicians don't attempt
to shield reproductive organs from the radiation since these organs are apparently too close to the jpouch.

I have a jpouch now and I am better than before the surgeries, but

still pooping 10-12 times per day including 3-4 at night.

I agree with the fecal transplant and triple antibiotic suggestions.

The cause of your UC could be bacterial. All the immune suppressing

drugs you've been given may have been treating only the symptoms.

Antibiotics or fecal transplant or a combination of the two are worth a try.

http://www.ncbi.nlm.nih.gov/pubmed/12811208

http://www.naturaldigestivehealing.com/blog/2011/02/06/bacteriotherapy-summary-post/

https://www.healingwell.com/community/default.aspx?f=38&m=1856519

http://www.ncbi.nlm.nih.gov/pubmed/20216533

Posted 8/3/2011 3:58 AM (GMT 0)
J-pouch or ileostomy surgery is a good option for ridding your body of UC for good. I chose to have a permanent ileostomy and had surgery last November. I am only 8 months out of surgery and am back to doing most everything I did before (and I will be doing everything once my body gets to its peak strength again). I am back to hiking, running, snowboarding, swimming, and eating just about anything I want. And the best part... no more meds with scary side effects! No more wondering when the next flare will be! I feel better than I have in over 6 years. Other than having a pouch attached to my side, which I adjusted well to in about 4 months, my life feels completely normal again. I work full-time, hang out with my friends again and travel. No one would ever know I had an ostomy unless I told them. I am incredibly happy with the results of the surgery and am thankful that I made this decision every day.
Posted 8/3/2011 11:36 AM (GMT 0)
Red22,

Also, consider this study - Colectomy Not a Final Cure for

Ulcerative Colitis, Data Show

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show/32ee77e67e.html

 

Posted 8/4/2011 3:15 AM (GMT 0)
thank u so much to all of you for the responses!! I would never have found such wonderful info on my own. I am going to check into all of this before I make any decisions about surgery... I'm willing to try anything that has worked on someone else. I'm not writing off getting a bag, it's just not right for me at this point in my life. I did get second opinions- from 3 drs but i'm going to present this new info to my dr as well.

thanks again
Posted 8/4/2011 3:56 AM (GMT 0)
no problems Red22 and if you do choose to pursue one of the alternative treatments, please keep us updated on how you go.
Posted 8/4/2011 3:06 PM (GMT 0)
Have you gone to http://www.jpouch.org/? They are a wonderful resource. The discussion page is great for asking questions.

I had my first surgery in January and my takedown was in April. I had a really great, experienced surgeon at the Cleveland Clinic. I take no prescription medication and only 1 or 2 immodium a day. Although it was a tough surgery, I am glad I got it done with and now can get on with the rest of my life without wondering when the next flare would hit or what the medication was doing to my body. More than 90% of people who have had the j-pouch done (even higher percentage at the CC) are happy with the results. You don't see results like that with any of the medications/treatments for UC.
Posted 8/13/2011 5:36 AM (GMT 0)
Well, Monday is my check up for my last flare up and I have so much info and questions to ask about.  Which is actually a good thing since I now have hope that I may find a suggestion from all of you that will make a huge difference in my life! I really want to do the LDN option, psyllium seed, and L glutamine. This next part will be hard for me since I live in the dairy state, but, I am going to switch to rice milk or almond milk for a while and maybe some protein shakes and see if I notice a difference. There's still more on my list, but I thought I would start with these. I will let you know what Monday brings and what the plan is.....
Posted 8/13/2011 10:56 AM (GMT 0)
Just wanted to send well wishes your way. If you do end up needing surgery after all is said and done, just know it's not the end of the world and you can truly get your life back (living proof here!)
Posted 8/13/2011 6:35 PM (GMT 0)
Red22,

Let us now what happens on Monday at your check up.

IMO, you should also give Slippery Elm Bark Powder - 1 tablespoon mixed in a little water, 3 times daily - a try.

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