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Hello -

My birth name is Lynne - those who love me and like to tease me call me "Lynneeee Pooh". The username Lynne was taken - feel free to refer to me by either name.

I was surfing the net attempting to find out if Pentasa or Endocort cause toxic reactions when combined with dairy products as I seemed to be dying of difficulty breathing and severe lethargy, when I came across this forum. I am grateful to find fellow travellers on this bloated and often-times frustrating path of ours.

I was diagnosed with Chrons in 2006 while hospitalized for severe pain, dehydration, malnutrition, abdominal swelling and a blockage which I didn't know I had. I can recall having symptoms back to 1999 especially after eating high protein foods such as steak and for some reason chocolate.

The CT scan came back with somewhat of a trace of Chrons. I researched everything I could find and attempted to heal myself homeopathically - I even bet my PCP that I wouldn't have another hospital visit. He just shook his head. I still owe him $5.00. The Chrons has progressed to over fourteen inches, has impaired my vision to the point that I am close to legally blind and has caused me to feel depression, hopelessness and frustration for the first time in my life.

I was diagnosed by a very good GI doctor - but I refused to come in for medication. So here I am now at home, unemployed, living in poverty - and grateful for my medical insurance and food stamps. Prior to this - I went through my 401k because I picked up every single disease that my consumers had while doing clinical social work and I was paying for my own medical insurance and prescriptions.

I often wonder now if being sensitive to medications is also a symptom of Chrons. For the past three months, I could hardly move - this was devastating to me as I am very energetic, am a hiker, kayaker and novice photographer. I had no idea how much vision I had lost until my husband pointed out cars that were stopping while I crossed the street. I will be receiving a cane that is both for weight and for assiting me in my peripheal vision next week. I will also be going to a doctor who works at a teaching university - who will hopefully know about Chron's, vision and glaucoma.

So - that's my story. I still don't know how or why dairy turned on me. I cut it out completely and began to feel better the next week. Unfortunately, my husband caught a bronchial infection - so now I have that. don't cha just love this auto immune disorder attacking us????

Thanx for reading - I know this is long - I am sick of sitting and feeling alone. When I am feeling better, I was invited to join our League for the Blind group in town. They seem to be a great group.

With affection, Lynne

Diagnosed in 2006
Began medications daily in June of 2011
Pentasa 500mg 2 @ 4x/day - (I can only manage 3x/day)
Endocort (there is a new generic out now) 3mg - 3 @ 1x/day - then 2 @ 1x/day then 1 @ 1x/day
Zoloft 25mg - Anxiety due to vision loss and startled reflex and panic attacks (which are new for me)
Vyvanse ADHD medication 20mg 1x/day
Vicodin 500mg as needed for abdomenal pain and eyes
 

Astra

Moderator
Hiya Lynne
and welcome

I'm so sorry that this disease has made you go blind, that's just so cruel! A large price to pay for going without meds for so long I'm afraid.
Glaucoma is in my family and my maternal Grandma had it, so I get checked every year for it.
I'm not sure about the toxic reactions to Pentasa and Entocort tho. I'm on both of these meds with no adverse reactions. I'm not intolerant to red meat, but I've chosen to not eat it any more, which has helped dramatically!
There is so much info on here about these meds, diet, intolerances etc, have a browse thro the sections.
Glad you found us, lots of Crohnie friends here for you, hope you find some comfort here with us.
lotsa luv
Joan xxx
 
HI Lynne, Wecome to the forum .I am so sorry your going through so much at this point in time, I am sorry about your sight. i have had crohn's for 21 years now and counting and it can be stressful, deblilitating, and depressive. but, your not alone now, i am so glad you decided to join our forum, people here are great and a great well of knowledge. you should keep a small diary for yourself to see what foods agree with you and foods that don't and stay away from them.You never specified if you are taking any maintenance drug are you on any now?. If your not you may won't to look into it. there are some maintenance drugs out there that are not that expensive and have little side effects.If they will work for you. That is my suggestion only i am no doctor. but, if you have any question just post them and i am sure the forum will respond. and again nice to meet you. best wishes.
 
tku both for your responses - I don't know what a maintenance drug is... Pentassa and Endocort? I have another month of Endocort left. The eye sight I had to fight tooth and nail for my opthamologist to hear me - finally, he sent me to a neurological opthamologist - who specializes in auto immune disorders such as Chrons and Lupus and Rheumetory arthritis. It seems I'm even teaching my GI doctor (new terms to me *chuckle*) about Chrons and vision. I am very, very, blessed to be a researcher by geekster and former profession - conversely, I can be too arrogant for my own good - which is the reason for the 14" PLUS... Where do I ask questions about the bacteria that people with Chrons do not have and probiotics and such? I've been looking.

I know I'm writing a lot today. I can feel the tears in my eyes right now because I feel so alone - alienated from my family. I believe my father died of undiagnosed Chron's - phew
 
Location
USA
Aw Lynne - I'm so sorry you're feeling so alone! Don't worry about writing too much - this is a great place and the people here are so supportive.

A maintenance drug is one that you're on for long-term control of the Crohn's - for me it's 6mp(mercaptopurine, simular to Immuran). The entocort is a steriod and is for "short"-term use to get the inflammation under control.

Check out the "Diet" forum - there are some threads about probiotics there.

I'm sorry you feel so far away from your family. Are they supportive? I know it's easy to feel isolated even in a very loving and supportive family.

So glad you found this site! )))hugs(((
 
Tku Inky - I saw your smiling face and read your upbeat words on the first threads that I viewed before joining. Your spirit and energy flows through space and time. What a nice gift. My family is not supportive because of historical dysfunction caused by the disease of addiction. This is not new - however sad. I miss my independence, my friends and most of all myself - my energetic, adventurous self because I have become very, very, tired. I'm hoping that my blood work will show me the reason - or by reading the threads - perhaps my GI doctor needs to inform me better about my illnesses - I used to be out hiking 20 miles or more a week - now I am exhausted after six blocks. This could not be helped as I've had no medical insurance for two years and had to be in poverty and practically broken to receive it. The good news is that I'm coming out of the fog and I hope that if I need direction - or suggestions as to what to ask my doctor - I will receive it here - right or wrong because I do not know the questions - Lynne
 

Trysha

Moderator
Staff member
Hello Lynne
Sorry to hear of your problems and hope there will soon be a way of resolving at least some of them.
It is too bad your first GI did not instruct you properly regarding Crohn's, it is not entirely your fault.
A good doctor will teach a patient as well as accurately diagnose.
That said it is good that you are now on some medication to control the crohn's.
Tiredness comes with the crohn's and is something that bothers me at times. I am very active usually and go to the gym for two hours three times a week, and sometimes find it very tiring. But I will keep going because some exercise is good for crohn's sufferers.I also walk a lot. It is good that you are being helped with the eyesight problems.
You will find this forum has very good people who will listen and help you as you have already found out on this page.
It is good to write about your problems, for every problem there is a solution.
It is a release for all the pent up feelings and can be helpful to find people with similar
problems and ones who are so very mch worse than we are.
Look for the sunshine although it hides from us it is always there.
Lots of hugs
Trysha
 
Location
USA
Thanks for your kind words! I try to stay positive in what I say even when I don't feel very positive, and I'm glad it comes across that way!

My heart goes out to you about your family situation. And my last flare before my current one happened when I was uninsured so I know what a mess that is.

In the "Treatments" forum there is tons of info about meds - Pentassa isn't a very "high-powered" med and it kinda sounds to me like you might need something more to get the Crohn's under control if you are that exhausted. Also, there's a Forum Wiki that has great articles, so if people are talking in a thread about something you aren't familar with, check out the Wiki and see if there's an article there.

:hug:
 

Astra

Moderator
Hiya Lynne

Here's a few pointers for you to ask re fatigue

Firstly, fatigue is caused by your immune system switching on, going beserk then not being able to switch off. It needs a lot of energy and calories to do this so it pinches energy from other vital organs, result = instant fatigue!

Secondly, have you had your red blood cell count checked? The other cause of fatigue is anaemia and vitamin B12 deficiency.

Also, if you're waking up in the middle of the night to go to the toilet, this would disrupt your sleep patterns, which results in being tired during the day.

And, it could be co-existing depression,

Lastly, if you're tapering down from a steroid, your adrenal glands which make natural steroids (cortisol) needs time to wake up, and if they're still sluggish, = instant fatigue!

Hope you find an answer soon
xxx
 
Welcome to the forum and as you know I am new too. I am so sorry about your sight and hopefully you have adjusted accordingly. I hope to speakl to you around the forum. Thank you so much for your moving story.
Lots of love<3
Thanusha
 
Thank you all for your kind words and information - I am at a stage where I don't know the reason why I am so tired all the time - this is not like me at all -as I've been hyperactive - as in motor movement my entire life and an out-of-doors gal. I am doing much better now that I've cut out dairy all together - I found out two weeks ago that the amount of dairy I injested may be the cause and it was somewhat. And - my immune system is down because my husband gave me the gift of bronchitis last week. I am also wondering if the medicine is working and my smoking and coffee are competing with the healing process. With all of the changes this past year and a half, I just don't know. So Monday when I go to the doctor's PCP - I am going to have a blood draw. Would you suggest what type of labs I should ask for? I see that most people in this group have different medications than I do - I want the blood work and the knowledge to take to my GI doctor in October. I realize we are not doctors - again, any questions for him or assistance would be great. I've looked for a forum on "What to ask your GI doctor but I haven't seen one yet. Love the nutrition, diet, alternative healing processes, etc. ;-) lol - I want to heal today darn it! ha.
 
Hi Lynne,

I am new to this forum also and just read your posts. I am so sorry to hear of your hard time of it recently. I can sympathise with you. I hope you start to feel better soon. I get very frustrated when I get the usual symptoms and often worry which only seems to make things worse. Try to hang on in there and get plenty of rest. Glad you have also found this forum and hope your eyesight will improve in time as well. Lots of helpful people on here and useful info I have only just scratched the surface of myself.
Get well soon
 

DustyKat

Super Moderator
Hi Lynne and :welcome:

I'm glad you have found your way here cause this is a fab place for support and info! But so sorry to hear of all that you have been through. :(

From your symptoms I assume you have Crohns in your small bowel/terminal ileum? If so you may have B12 deficiency as this is the only area of the bowel where it is absorbed. When you have bloods drawn ask to have tests done for B12, Folate, Iron Stores and Vitamin D. Perhaps these will go some way to explaining your level of fatigue.

Smoking is contraindicated with CD and I know many people here find coffee doesn't agree with them so the combination of the two may well be affecting your overall health.
My daughter has found that meat, in general, and dairy products don't agree with her so has moved to a vegan diet. In her case she finds that eliminating these things has given her far more energy and a much better sense of well being.

Good luck hun and I hope things soon settle for you. Welcome aboard!

Dusty. :heart:
 
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