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Ulcers at the terminal ileum

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Crohn's Disease
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Posted 6/7/2009 10:34 PM (GMT 0)

My daughter was diagnosed 5 years ago with Chrons. In the begining we tried Remicaid. Then we tried Humira and have been consistently on it now for 6 months with double dose injections every 2 weeks. She now also has a diagnosis of IBS, problems with acid burning her esophagus, Fibromyalsia and something about her stomach emptying slowly.  She is only 20 and struggling mentally as I am too.  Recent study showed 10 moderate ulcers at the terminal Ileum.  We have tried everything the doctors have suggested over the years Morephine, Dilotid, anti nausea medications, Prilosec, antidepressants, prednisone, entocort, Lyrica, Remicaid and Humira.  She continually has issues at the Terminal Illeum.  We have tried all natural herbs, accupuncture, massage and chiropractic.

Pro's and con's to removing the terminal illeum where the ulcers are located because of reoccurance.  We see a surgeon on Friday but they want her to try Symsia first.  She feels like she is just injecting more poisons into her system and just wants the surgery.  She is in constant abdominal pain, side pain and back pain and is unable to function on a regular basis.  We would greatly appreciate any information from people who have experienced this or have had the surgery. 

Colorado girls

Posted 6/7/2009 11:49 PM (GMT 0)
I had surgery in Feb 2009 and had 18" removed along with my TI and appendix. The worst part of the surgery for me was all the worrying prior to it.The surgery went fine and so did the recovery, I had very little pain and was back to work in 2-1/2 weeks on light duty. The worst pain I had was shoulder pain from the gas that they pump in you, it hurt for weeks and went from right shoulder to left shoulder. Other than that all was well.
I would talk with a surgeon and ask all the questions that you can think of. Better yet right them down starting now and then ask when you see the surgeon. Just remember that surgery is NO CURE and that the Crohns may come back at anytime.
The surgery will should give her some relief and a better quality of life for awhile until some new med or miricle drug comes out on the market.
I wish you both all the best.
Wolfie
Posted 6/8/2009 2:55 AM (GMT 0)
Thank you so much for your encouragement. It gives me some hope and I will share it with her as well. I have encouraged her to go to a support group, but she won't go. I am hoping after starting this, that she will see there are other people out there struggling with the same thing and help her with coping. What was the reason that they did the surgery in your case? Good luck to you and thank you so much for responding.

Colorado Girls
Posted 6/8/2009 3:34 AM (GMT 0)
Wow, I really feel for her. I am 24 and have been living with this terrible disease for about 15 years. I had my TI removed in May 2007, as well as part of the cecum. After a few months of recovery I felt much better, although I have had difficulty putting the weight on that I lost through the whole ordeal. On my last scope, it was apparent that the "new" TI was ulcerated again, as well as in other places. Sadly, this is not unusual. This disease is very random and strikes anywhere and everywhere. The best advice I have is to do your research, talk with your doctors extensively, and weigh the options. When surgery is the only option for relief, it is necessary. Tell your daughter to join this group! This site has helped me a lot with the issues that I cannot discuss with anyone else, and a face-to-face group may be a little intimitading due to the embarrassing nature of this illness. Good luck!
Posted 6/8/2009 11:51 AM (GMT 0)
I had to have surgery because My TI was strictured really bad. A support group would be good, but she is probably embarressed about her having this disease. Maybe you could get her to look at this forum and see that there are alot of people suffering from this disease and coping with it with the help from others.
Wishing her well!
Wolfie
Posted 6/8/2009 1:30 PM (GMT 0)
Generally surgery is a last option type of thing when no meds work. Does she have any strictures or narrowing at her TI or is it just inflammation? What are her doctors saying about her having surgery? Sorry so many questions, but trying to figure out what is going on with her. Surgery was done on me both times because of obstructions. If her problem is just inflammation, it is best to try to treat it with meds. I would give the Cimzia a chance, and then if that does not work then talk to your doctor about surgical options. Good luck!
Posted 6/8/2009 5:12 PM (GMT 0)
If your daughter has not looked into exclusive enteral nutrition, I think it is worth trying. Enteral nutrition means going on an exclusive liquid diet using a product like Ensure. I used something called Nutren which is made by Nestle. Enteral nutrition is especially effective for people who have Crohn's in the terminal ileum.

It does take willpower to forgo food for 8 weeks (generally this is the recommended time to get into remission) but many people who try it, swear by it. If it works she should feel a difference within a week or two.
Posted 6/8/2009 10:24 PM (GMT 0)
Wow! Lots of good information and things we haven't heard of before.

She doesn't have any strictures or obstructions that we know of, but she has been hospitalized 4 times since October 2008. Before that she was in remission for 6 months and before that she was hospitalized like clockwork every 3 months. What the tests do show is marked inflammation at the terminal ileum and the illosecal (?) valve and 10 moderate size ulcers at the TI.

She is desperate in so much pain that she can't function. She called in sick to work today and unfortunately her employers are becoming less compassionate. She is on her way to the ER as she says she can't keep food down and when she does eat she has extreme pain. She is crying and just miserable. Ijust feel so bad that I don't have the answeres and I can't help her.

She has been on Humira for 6 months and because she still has inflammation they have decided it isn't affective. She has been on steroids multiple times and it does nothing for her. She has been on antidepressants because they say that will help, but it makes things worse emotionally. I feel like we have tried everything and nothing seems to work?
Posted 6/9/2009 3:47 PM (GMT 0)
Hi Colorado girl

This situtaion is tough, and i understand that you may have tried what you felt is everything, but I believe your daughter can be well if she follows the correct natural healing diet and takes the best quality supplements.

A study of Jini Patel Thompson's site (http://www.jinipatelthompson.com/), and especially her books 'Listen to your gut and / or The IBD remission diet' are very helpful and specific to many different nuances of IBD. She lists many diets and supplements that could be taylored to suit your daughter.

Dr. Richard Schulze has had a fantastic success rate treating IBD with a natural diet and his super strong supplements and herbal formulas, his website is https://web0.herbdoc.com/index.php?option=com_frontpage&Itemid=1

From what I have gleaned from these sources over the last few years, in short she should probably start with going on a liquid diet for around a week or two, or even better a juice fast around for 5 days. This sounds intense but really, I have done it successfully in the past and so have many others, and once you get the hang of it - it's easy. She should be taking a powerful vitamin and mineral supplement and intestinal healing formula (Dr. Schulze's Superfood and Intestinal formula # 2 are best here). Fresh organic high quality Aloe vera juice and even better, lots fresh gel from a leaf (a large leaf a day) would be great during a fast or liquid diet too. If the thought of doing any of this without professional supervision is daunting, I would call Dr. Schulze's team (see website) and find a good practitioner near to where you live

If your daughter is capable, a general diet that would cover all bases is 'The Ph Miracle' (http://www.amazon.com/pH-Miracle-Balance-Reclaim-Health/dp/B001Q3M5SU/ref=sr_1_1?ie=UTF8&s=books&qid=1244560675&sr=8-1). It is fantastic as IBD is strongly linked with overacidity in the body, which is caused mostly by a poor diet (which in many cases is normally considered a standard healthy diet!!). Whatever healing diet is followed, chewing well and eating soft foods, drinking plenty of fresh veg juices and an abundance of water is often successful, and a great foundation for anything else you might want to add to a health programme for IBD.

Illness can be deceptive, you become conditioned to not being well and take poor health as the norm. The most important piece of advice I could give from personal experience is that if any improvements are made on these diets or supplements, not to overly celebrate the small victory, but to keep on pushing.. people can sometimes have complete remission on these types of programmes, and even if it means making big lifestyle changes, it will most certainly be worth it.

Good luck

:-)

Post Edited (Rockinfreakapotamus) : 6/9/2009 10:11:05 AM (GMT-6)

Posted 6/9/2009 6:57 PM (GMT 0)
Have the docs considered slamming her with very high dose of Prednisone 70 mg plus and then gradually tapering off, that might work...otherwise, if the ulcers have a reached non-treatable stage then surgery is an option. The problem as several others have mentioned the CD will come back, it just a question of when. Given that she is very young, it would be a good idea to put surgery off as much as possible. Have also looked at LDN or anti-map therapy, etc. There are several threads in this forum regarding that. Most GI's will ignore that because these along with diet are considered to be far-off or off-the mainstream therapies and they won't try it. They will only go for stuff approved by the American GI Association.
Posted 6/9/2009 8:11 PM (GMT 0)
Thank you Iram and Rockinfreakapotamus for the information. You are right that you can come to be conditioned to be sick and I think that she is stuck in that rut. She has been sick for so long that she doesn't remember what it feels like to feel good. Last night she went to the ER because she was in so much pain, can't keep food down and spitting up blood. They said on CT scan she has peptic ulcers. Just ver frustrating.

I really appreciate your time, energy and thought you have put into your response. I will look into those ideas and share them with her. I am just so done with the medical treatments, but it's not me that has to decide on course of treatment, I can only recommend different ideas and approaches to her. Thanks again!

Colorado girls
Posted 2/19/2010 1:20 PM (GMT 0)
I'm afraid I was like your daughter 14 years ago.At 24 I had lost 3 stones in weight and had ulcers from my mouth all the way through my intestines. Had to take 20+ tablets a day, couldn't eat, couldn't sleep and it took 18 months to diagnose Crohns. Planned all trips around available toilets!! I was put on anti-depressants and steroids but it turned out I had intolerances to preservatives in my medication which were making the ulcers worse. Finally got that sorted and had a re-section - right hemicolectomy about 12 years ago and luckily not been too bad since. My family found it hard but just being there really was the best. The surgery really helped my in my case and the depression finally lifted after a year. I had issues at work too. One stage off being told to leave - unfortunately my boss was a real bully. Eventually I made the move to leave and got a new job after surgery. I now have 2 lovely kids and a really enjoyable job. I take Azathioprine, get Vitamin B12 jabs and occasionally steroids if I get a flare up. Off to the doc this afternoon as think I may have a flare up coming - hey ho it's how it goes. I have tried all sorts of diets - unfortunately eating healthily doesn't agree with me. I just try to eat a balanced diet combined with light exercise. Let your daughter know there is light at the end of the tunnel. Fingers crossed for her. Best wishes.
Posted 2/19/2010 1:58 PM (GMT 0)
Hi Supo and welcome to Healingwell. You have responded to a really old post. You might be better off starting your own post, so that you get more responses. Good luck!
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