Feeling alone

• By JulieKC
• Posted June 21, 2009 at 8:55 am
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Jen:
Oh my goodness! You have been through so much, and you are so young! My heart just aches for what you are going through!
I know how you feel about not "feeling up to" going out with friends, and how difficult it is to eat anywhere but home. I had a friend ask me to go out Friday night, and I was all ready to, had been through a pretty stable day, and then crashed about an hour and a half before it was time to go.
Try not to push yourself too much, take it a day at a time, so you can relearn what your body can take, although I know that can change day by day too.
You are in my thoughts and prayers.
Be well.
Julie

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• By under3feet
• Posted June 21, 2009 at 9:53 am
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Hi JeniMac,

I have short bowel syndrome, had all but 2 1/2 feet of small intestine removed. I am on TPN 10 hours a day. I understand the loneliness and the frustrations of not being able to eat normally. My resection was in July '08 and I have improved since then, but still struggle with nausea, vomitting, severe cramps when I eat. I have found certain foods make it worse. I avoid dairy, sugars, fiber, and high fat. My nutritionist told me no more than 3 grams of fat, 2 grams of fiber, and 8 grams of sugar per 100 calories. I check labels when I shop. Foods I can tolerate are: potatoes, noodles, eggs, white breads, fish, chicken (small amounts), low sugar cereals. And that's about it. Pizza is definetly out of the question, too much spice! Have you been seen by a GI doctor? Not all GI's understand short bowel syndrome. I live in AZ and my doctor at the Mayo Clinic is great. But the key is in the nutritionist. They both told me it could take up to 2 years to recover. I currently weigh 94 lbs, which is up from my all time low of 72.8 lbs. I was normally 105 lbs. Hang in there, and I'll try too. I've talked with other people with similar problems and they've all said there's hope at the end of the tunnel. It seems so far away, but it'll come. Good Luck! under3feet

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• By JeniMac
• Posted June 21, 2009 at 11:51 am
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Under3Feet,

Wow...you have certainly been through it, haven't you? I also had my surgery in July '08. When I left the hospital I was at 90 pounds--I had gotten back up to 104, but am back down to 99. It's a constant struggle & I find myself just wanting to avoid food so I can have a semi-normal day & not have to scope out the nearest bathroom everywhere I go.

Know that I am thinking of you. I cannot imagine being on that TPN 10 hours a day. When I was on it, I felt better, but I also know the inconvienence it is as well. It takes a lot of support from those around you who understand.

Yes, I do have a GI doctor. I trust him a lot, I think he is as frustrated with me not getting back on my feet as quickly as they had thought, as well. The surgery has left me with severe GP & terrible reflux. He wanted me to go to Mayo in Minnesota...however, my insurance will only cover half of the costs because it is 'out of network.' It is completely frustrating. So...we are trying our best to do what we can do here. Sometimes I feel like we are just going round & round on a Merry-Go round! But, he is quick to answer questions & call back & even gave me his personal cell phone number to reach him, though I have never used it, it makes me feel safe to have.

I'll keep you in my prayers & thoughts. Thanks for replying to my message...I know you have it much worse than I do. Thanks for understanding.

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• By JeniMac
• Posted June 21, 2009 at 11:54 am
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Yeah, I know how you feel. You are all set to go out & dressed up & ready for a bit of time away from home and then 'wham' it hits & there isn't a darn thing you can do about it. It's costed me several relationships with guys because they always thinking I am ditching them or flaking out on them. But, I am quickly learning that if they cannot understand, then I don't need their stress anyway!!!

Sometimes I can 'fake it' but often what I'm feeling shows on my face--so those who know me see right through the 'I'm fine.' That is both good & bad! (SMILE) I'm anxiously awaiting my doctor's visit on the 29th--I need a game plan. My Upper GI with barium study came back showing no strictures, which is awesome, but now we still have to figure out how to fix things. SUch an adventure!! haha.

Thank you for the thoughts & know that you are in mine. Please write anytime!

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• By JeniMac
• Posted June 21, 2009 at 11:57 am
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Under3Feet...

I forgot to mention that I went to a Nutritionist. She is someone my doctor has never used before--so I went. OH MY...it wasn't exactly what either my doc or I had wanted. She started out by saying 'honey, do you talk to your intestines?' I sat their blankly. She said everytime I sit down to a meal I need to rub my stomach & say OUT LOUD how much I love them & am grateful for them & they are wonderful. And then, they will be. She told me it was 'mind over matter.' She also was anti-doc & told me I shouldn't take prescriptions, only herbs from Mother Nature. The only food advice she gave me was a can of the tube feeding stuff to mix in my food. SO...we are on the hunt for another nutritionist. I get the fact I need to do stress relief & I think there is some merit to herbs...but she was way too out there for me. I wanted to say 'if this was mind over matter' I'd be scarfing down a huge pizza right now, lady! haha!

It did, however, provide me with some good stories to share! (SMILE)

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• By Alisha
• Posted June 21, 2009 at 12:49 pm
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I have to say wow what helpful advice that your nutritionist gave you and I would probably feel the same way you do about being way out there. I know how you feel when you say that having any sort of a GI problem can ruin your normal life. I am just starting the process of having some normal I am on tpn for about 20 hrs a day and let me tell you I just started working and it has been a juggle to try and arrange the time that I need to be home so I can hookup or unhook and put my vitamins in has become a challenge when you dont work the same hours every day. I need to feel like I had some part of normal so I am trying to go back to work we will see how it goes. I just take it day by day although it isnt easy. I so wish I could go back to the way my life was. I have to say it helps me to hear about other people who know how I feel. I hope this helps you.

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• By daviandsteve
• Posted June 21, 2009 at 1:44 pm
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I have never heard such nonsense! I want to use an expletive here, but I'm trying to restrain myself. I've had really lousy dietitians who knew nothing about SBS and gave me completely inappropriate diets, but I've never come across one who told me it was mind over matter. I did have a shrink once tell me, when I was a patient at Shock Trauma following the car accident which dammaged my guts and caused me to have SBS, that I should find something to do and to stop feeling sorry for myself! I wanted to tell him: 'what would you suggest? I can't get out of bed without help, I can't eat anything, I have to drink these horrid elemental drinks, I can't move my left arm, and I have an IV in my right (in addition to a temporary central line)!' Luckily, he was not my main shrink and I only saw him that one time; I had a very compassionate psych resident assigned to me who stopped by my cubicle several times a week.

Perhaps you could get list of dietitians from Oley (1-800-776-OLEY). I don't know where in Iowa you live, but there are intestinal rehab programs at the U of N in Omaha, Mayo Clinic in Minnesota, and possibly at Northwestern in Chicago. I have found that it has been worth it to periodically travel out of town for medical care. I have a wonderful GI nearby, but she just doesn't see that many patients who have the complicated problems that I do. Thankfully, she is always happy for a second opinion (unlike a former GI doc who resented my doing so). I went to Omaha about four years ago and the best part of the trip was getting to meet with an experienced dietitian. She spent several hours with us, and I went home with a notebook full of recipes and recommended products.

Take care!
Davi

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• By JeniMac
• Posted June 21, 2009 at 4:33 pm
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Alisha,
Just knowing people are going through the same thing (though I am sorry you all are) is helpful. Your words are encouraging. I can imagine it is very difficult to work when it seems everything revolves around the TPN. I hope your boss & job is cooperative & realizes what an asset you are!! Hang in there!

Jen

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• By JeniMac
• Posted June 21, 2009 at 4:39 pm
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Davi,

I live in Des Moines, only a 2 hour drive from Omaha. Do you happen to have the name of the nutritionist you saw there? It would be worth the drive. There is also another nutritionist here in Des Moines, she works with oncology patients--but I still don't know if she would be the best for my GP & SBS.

As for your old GI doc...my GI doc welcomes second opinions. He said that "any doctor who isn't willing to let their patient feel comfortable seeking a second opinion, is in medicine for the wrongs reasons---they are in it for themselves." I found that remarkable. There have also be instances where he has said "honestly, I've never dealt with this before, let's find out what so & so says about it.' I think that is a vital aspect to patient care.

Your shrink sounded like he needed some more psych classes. WOW! I cannot imagine. I may have lost my cool at that moment. Congratulations on surviving through all the difficulties. It isn't easy.

Thank you for your advice & information. I hope someday too I can walk out with a notebook full of things to help me. I'd rather not rely on that nasty supplemental stuff. If I do, I do...but at least I won't be told "mind over matter." I wanted to say 'really lady, I'm imagining you disappearing & yet, you're still here." haha!

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• By daviandsteve
• Posted June 21, 2009 at 11:21 pm
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Jen,

I love it! If only we could imagine these insensitive jerks away - wow! There are some people who just should not be working in the health professions.

The dietitian I saw at the Nebraska Medical Center was Becky Weseman. Her card has the phone number for the IRP (Intestinal Rehabilitation Program) on it, not a direct number. That number is 402-559-2121. I hope that's still current; I haven't been in contact with them for several years. I don't know if you can make an appointment with her directly, or if you have to see the docs there first, but it's worth a call to find out. I was there for two very full days, having tests (extensive blood work, barium swallow,etc.), then seeing two different doctors in addition to meeting with Becky. Their gastroenterologist (he's no longer at NMC) was the first person to really understand the small bowel bacterial overgrowth that I am prone to; he described my symptoms exactly. Since I returned from the center, my GI here is willing to let me have a course of antibiotics every couple of months; she had been too worried about my developing resistant strains, but saw that I really felt much better during and after therapy.

I know what you mean about worrying you won't have enough energy for school. My daughter has MS. She has only (Ha!) to complete her dissertation and then she will receive a Ph. D. in English Lit, but the disease/treatment has sapped her energy. Having a chronic illness is indeed lonely; it is so hard when you see others having a good time. I just hope they soon figure out what is causing your inability to keep food down, and that there is a treatment/plan for you that has few side effects.

Davi

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• By Zacolton
• Posted June 22, 2009 at 10:39 pm
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Well I have to say this post could have been written by me, haha. You are not alone. I'm currently having the same issues with my social life and school. I really want to go to university and someday get into politics but my disease has pushed things back and I'm afraid to sign up because I don't know how much energy I'll have. My social life is also shot to shit at the moment. I don't really know what to say other than keep on trucking and know there are many of us suffering with you, you are not alone. If you need anything just send me a message.

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• By busyteacher
• Posted June 23, 2009 at 7:29 pm
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I know. I have given up on my Master's Degree, and am trying to find an on-line Spanish course, because I cannot teach and attend class.
It really is frustrating.

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• By Vicik
• Posted June 23, 2009 at 10:54 pm
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That has to be hard. I can't believe I have run 12 marathons and now have a hard time walking my dog a mile. I had a lot of aspiration and as a reult permanent lung damage and now a feeding tube. My running days are over. Just talk to and happy to get through the day. What i really need is a friend to and hug once in a while. i wish us both the best in pursuing our hopes and dreams.

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• By alphabubo
• Posted June 24, 2009 at 9:35 am
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Dear Jen,
I have also found that my health problems can be very isolating at times. Most of my friends either do not live in my town or ones I have met online as it is hard sometimes to get out often because of how I can become so easily tired. I had been just able to get a bachelor's degree, but I became too sick to continue, and I have not yet gotten strong enough to return although I would love to one day, either in the field of linguistics or medicine. At the moment, I am just trying to read books in my area of interest, in the hopes that it will be useful for the day I can return, and I do not want to entirely give up that hope yet. I sometimes feel as though I am stuck in hole as the rest of the world passes by, but then I try to remember that I can still have an effect where I am and that there is beauty everywhere, it just might take some effort sometimes to find it. This is one of the reasons I so appreciate groups like this where so many are reaching out to each other.

I am sorry that you had to go through that experience with the nutritionist. I am sure if it was simply a matter of willing the digestive tract to work better there would be a great deal many less people having problems. I do think it is important to have a positive attitude, but other measures must be used in addition to address physical problems. I hope you can find a nutritionist that will offer practical suggestions that are more helpful.

I am glad that your doctor is willing to be honest with you. I much prefer that than doctors who keep you as a patient and yet do not know what to do next and just keep you in a limbo of sorts. This can be frustrating for the patient.

I hope that you can soon find some ways to help get you the nutrition that you need and to obtain a healthy weight. Weight loss has always been a concern for me, in fact, I have been underweight ever since I was first diagnosed with gastroparesis almost seven years ago. At my healthiest I got up to 120lbs. which was a very good weight for me. Since my gastroparesis diagnosis the highest I have got is about 100lbs. but now I am only 84lbs. (I am 5'6"). Nutrition has been a constant concern for me. Just the gaining of a pound can start a mini celebration. So, I understand how important this is.

I hope that if you try the Domperidone that it will help you. Unlike Reglan, it is less likely to cause neurological side effects because it does not cross the blood brain barrier. However, like any medicine it has its own risks, and each person reacts differently. At the highest doses, I only experienced a slight breast size increase and a little lactation and no other side effects. It did not help me, but it has helped others. It raises prolactin levels which probably account for the side effects I experienced and has been known to be given to women who want to increase their milk production while breast-feeding.

Anyway, I just wanted to let you know that there is another person here who understands some of what you are going through. I will be sure to keep you in my thoughts and prayers. Many, many hugs.

Warm regards,
Bobbiejo

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• By under3feet
• Posted June 29, 2009 at 8:09 am
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Mayo is out of network for my insurance also (united healthcare). But I was able to get a "gap exception". This means that they cover it as in network. You have to call the insurance and ask for the gap exception. They usually will give me 3 or 4 visits in a 4 to 6 month time frame. And every 4 to 6 months I request another gap exception. I still get billed by mayo and I have to call the insurance to remind them of the gap exception. It's a pain, but I've only had to pay my copays so far.

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• By xformerveganx
• Posted July 17, 2009 at 5:15 pm
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I suffered from similiar symptoms from GP and a doctor at Temple University Hospital had prescribed Domperidone. I did not experience any side effects, unlike Reglan where I get the shakes. Domperidone is off market in the United States, you can have your doctor send a script to a pharmacy in PA and have it mailed to you, it's compounded. I would suggest trying it although it didn't really make a difference in my GP symptoms. I had a small bowel transplant at Mount Sinai in NYC. Have you considered getting a second opinion or going to a specialty hospital for surgery?

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