Not eating, but not functioning either

Hello,
I probably have indeterminate IBD, meaning that my condition can't be diagnosed as either Crohn's or Ulcerative Colitis and that I have some symptoms and some pathology of each disease.

My current problems started last spring. I have had some testing and hope to see a GI specialist sometime in the next six months (that's how long the wait is where I live.) In the meantime I've tried the LOFFLEX diet which helped the D but not the nausea, bloating and swelling and weight loss. Now I'm on a full liquid diet, waiting for the proper formula to arrive for me to try. I really don't mind not eating because I have less pain, and I don't have to be thinking about what foods might be causing my symptoms- I needed a break from that.

I have learned a lot already from reading on the forum. I really appreciate people's honesty and willingness to tell it like it is. It has helped me to admit to myself how badly I have been feeling and to not deny the severity of my symptoms, which has been one way that I usually deal with them.

Hi Happy, good to see you on here. This forum has helped me a great deal too...even if it's just to force myself to realise how bad I've been feeling.

Can you explain the LOFFLEX diet? I've never heard of that one before...

Hi georgiegirl,
Thanks for responding to my post.

The LOFFLEX diet is one that is sometimes used after inducing remission with an elemental (liquid) diet, especially in the U.K. If you google "Crohn's organization U.K.", you should get Dr. Hunter's website.

There is also a really good book "Beat Crohn's" that describes the use of elemental diets to treat IBD, and the return to eating. It also describes the LOFFLEX diet (on page 192) as LOw Fiber, Fat Limited, EXclusion diet, hence the term.

Hi Happy,

I hope they can get your symptoms under control fairly soon. 6 months to see a GI?? Thats not good. Have you thought about going to the ER so you can get started on some meds?


I hope you start to feel better soon.

Hi Nica,
Thanks for your reply to my post.
My GP gave me a prescription for Asacol, if I wish to take it. Because she is not sure whether I have Crohn's or UC I am leery about taking any meds. This is becasue of previous reactions to other meds for other health problems. I have had several allergic reactions and if there are side effects for a med, I'll usually have it. So, I am trying the elemental diet followed by a low residue diet approach right now. The proper elemental formula is supposed to come in on Tuesday, so I'm trying to hang on until then. If I'm not getting significant improvement by the new year, I'll give in and try the Asacol.
Yes, 6 months is a long time to wait for a GI appointment- if my symptoms worsen, I'll certainly go to the ER, but because we have such a shortage of docs where I live, the GI's operate on a triage system and I'm unlikely to get seen earlier unless things get worse (which I hope doesn't happen.)

I forgot to mention that I am having acupuncture treatments as well and they are helping the nausea, bloating and swelling. Hopefully they will help to improve my energy level because that is a huge problem right now.

Where are you located in Canada? I'm in Barrie, ON, and the wait to get in to a specialist is crazy!! I actually wound up in hospital when I was first diagnosed because of the severity of my symptoms and the wait to get a doctor. Sad to say, it seems that you have to get very bad to get any treatment here. This is just my opinion, but I'd take the Asacol if I were you..it most likely will help with your symptoms and make the 6 month wait more tolerable.

Good luck to you!

Also, re: energy level...have you had your B12 levels checked? Bump your B12 up and you might find your energy levels increase.

Hi Nyx,
Thanks for responding to my post.
I'm in Western Canada.
I was taking a B12 supplement, but I can't take it on the liquid diet. The new formula that I am waiting for has extra B12 in it, so maybe that will help. My bloodwork in July and Sept. was OK for B12, but I will ask to get it and my iron stores checked when I see my GP again. It's a bit of a wait to get in to see her too.
I just might start on the Asacol, but I will try to wait until I take the new formula.
Thanks for your suggestions.

For the past two years, I have been contemplating the surgical resection of a 15 cm long stricture that is proximal to my ileo-ecal valve. I was first diagnosed with Crohn’s 20 years ago after being treated surgically for a peri-anal abscess. As far as I can remember, my stomach problems began at age 7 when I was treated with high doses of penicillin for Lyme Disease.

I was even scheduled for surgery at Stanford, but changed my mind a week before. I am really concerned about losing the ileocecal valve. It seems important. I would like to talk with more people who have had the surgery. I would like to know their state before and after the surgery. Mostly, I am concerned about diarrhea. Currently, I have a bout once a month, usually when I am stressed out and not eating well.

I am worried that if I have the valve removed, I will have much more frequent diarrhea. The trade-off is that now, I am kept awake by cramping several nights per month. I also wonder if I would have a lot more energy if I go ahead and get the surgery. The problem is that there is no going back.

Has anyone else agonized over this decision like me?
I would like to know anyone with this sort of personal experience?

Hi dvdgrs,
I am sorry to hear that you are dealing with such a major decision, especially at this time of year. I have not had any surgery for IBD, so I can't offer an opinion about that.
While you are wrestling with your decision, have you considered a liquid diet during the difficult times with diarrhea? Consuming a only a liquid supplement has certainly stopped the diarrhea for me. I know it doesn't work for everyone, and it doesn't fix all the problems, either.
May the best solution for you present itself.

Hi dvrgd,
Welcome. I think you may get a better response if you start your own thread. I am rather new here too so I am not very clear either on how it all works. Good luck to you,
Michele
PS sorry if I did not get your name right. I forgot to take close look at the spelling!

Happy,
Hi! Waiting 6 months sounds like torture to me! I wish you all the best and hope your waiting is not too painful for you.
Michele

Hi MADimarc,
Thanks for your post and good wishes.
Good news! The new liquid supplement that I have been waiting for, Vivonex Plus, just arrived. It is mixed and cooling in the 'fridge as I write this. It is unsweetened and unflavoured. The preliminary sip that I had was not too bad. Hopefully, I will be able to tolerate this better than the Ensure Plus. I was not able to consume enough calories or liquid on the Ensure as it still caused some digestive upset ( no D though). So, Christmas has come early for me.

I just wanted to update my story. I started on an elemental diet in early December, moving on to the formula, VivonexPlus, on December 20th. It has really helped. Most of my digestive symptoms have completely resolved and my blood work is completely normal! Currently, I consume about 1050 calories a day of the formula while trying to move up to 1200. My weight loss has slowed to about 1-2 pounds a week. I feel much better and I am starting to gain some energy again. If all goes well, I hope to start eating again in about 10 days. I am actually starting to think about food again, which tells me how much better I feel, because when I felt so badly before, I was quite happy to give up eating. I'll start eating again very slowly and with an elimination diet. I'll post how it goes once I start.

Happy,
Glad you are feeling better. I hope it Remains that way for you.
Michele

Thanks MADiMarc. After my acupuncture appointment today, I finally bought some new jeans (I could barely keep my old ones on). I did not realize that putting jeans on and off several times could be considered a form of exercise, but now it is for me. So, despite the fact that I am functioning much better at home, I realized today that I still have a long way to go to get back to full function in the outside world. However, I am definitely on the way.

I just got a call regarding my specialist appointment. They want to book me for a colonoscopy at the end of April. I said that I want to see and speak with the specialist before I have any more tests. I was told that a message would be sent to the nurse about my request, but I got the impression that what I would get was a 'hello' from the doctor before the 'scope and not a proper appointment as that would be 'difficult' to arrange. I don't want another 'scope, I just want to ask the doc some questions. What is the usual procedure for others? Did you get to speak to the gasteroenterologist before he/she shoved something up your bum? I am getting tired of 'technical' medicine. I want to speak to a live human being and have a conversation about my health.