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04-01-2014, 03:54 AM   #31
lsgs
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Hi guys,

I have other illnesses as well as inflammatory bowel disease.

The biggie is primary sjogren's syndrome which on the face of it doesn't seem that serious but the long term consequences are pretty horrible. It causes dry eyes and dry mouth as main symptoms. This seems straightforward until if gives you double vision, blepharitis, dysphagia, reflux/regurgitation due to weak pyloric sphincter. Also other exocrine glands are 'dry' so this can be your pancreas (I take pancreatic enzymes). It's also caused autoimmune liver disease.

However, it also causes difficulty having kids. I haven't tried, and we don't know if we will, but I have a specific antibody in my blood which means that I can conceive but will probably repeatedly miscarry. And if the baby survives living in my body, it will possibly have neonatal heart block and need a pacemaker fitted right away. This scares me.

Due to sjogren's I'm also on my 3rd cancer scare at the moment. Sjogren's causes a 44x increased risk of lymphoma. I have two new lumps in my neck and one is hard and fixed so unfortunately doctors have to suspect it's cancer until it's ruled out.

Sjogren's doesn't cause me to be that sick, but it probably will make me sick in the future.

My IBD have been the source of frustration for me as it's been hiding very well and doctors still can't find where the inflammation's coming from. It made me so, so, so ill I totally lost all independence. I couldn't walk, I couldn't shower on my own in case I passed out, I couldn't eat... Now after steroids and LDN I maintain more of a life than I ever, ever thought I would again. But I am totally traumatised by what has happened to me tbh.

The other things I have are spondylitis which is almost gone on LDN and recurrent cholecystitis which is SO SORE and I normally need to go to hospital for drugs.

I really don't agree with the 'my problems are bigger than yours' thing.
__________________
Sjogren's syndrome - 2009

Presumed IBD - 2012

Cholecystectomy, liver biopsy and lymph node excision - 2015

Primary Biliary Cholangitis - 2016

Bile Reflux Gastritis - 2016
04-01-2014, 04:39 AM   #32
ron50
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Hi all,
I have always suffered from "he is big and strong ,can't be much wrong with him". Un fortunately a lot of symptoms have been glossed over by medicos and several early bouts of peptic and duodenal ulcers were put down to lifestyle. Hmmm must be a heavy drinker. Didn't drink. All came to a head in 1998 when I had my first colonoscopy. I had endoscopies up till then. They removed 18 inches of my colon the following day plus thirteen lymph nodes six of which were cancerous. I was not given much chance of survival because of the aggression of the cancer. I had a year,forty eight sessions ,of heavy duty chemo. Afew years later I lost my gallbladder after a small black stone blocked off my pancreatic duct causing acute pancreatitis. Since then I have developed severe psoriatic arthritis, moderate to severe motor-sensori peripheral neuropathy of both legs and left hand. I started to suffer peripheral edeema . Urine tesys showed I was losing nearly three grams a day. I have been on various immune-suppressants. I suffered parainfluenza last year . I leaked some troponin, the heart attack enzyme . They eventually decided it was the flu and asthma beating up on me . I wore a twenty four hour holter monitor and recorded 10,299 premature ventricular ectopic beats and several runs of tachycardia. I was put on prednisone initially for the kidney problem. I stayed on 75 mg a day for nearly eighteen months. Did not help my kidneys but now I have type two diabetes and spondylitis caused by osteoporosis.
I am now in nephrotic syndrome with my kidneys ,losing around seven grams of protein a day. I had 5flourouricil and levamisole for chemo, cimetidine and somac as proton pump inhibitors. sulfasalazine, arava and methotrexate for arthritis, nurontin ,endep and lyrica for neuropathy, metformin for diabetes ,methotrexate ,prednisone and now cyclosporine for my kidneys. The best they can do for my pain is panadol. I take micardis 80mg and diltiazem 240 mg for bloodpressure. The diltiazem also enhances ciclosporine absorbtion allowing a less toxic dose and slows my heart beat.I take two anti-histamines a day to avoid vertigo. I still work up to six days a week and am 64 on Sunday . I have survived cancer for over fifteen years and some times wonder if that was not a big mistake... Ron.
04-01-2014, 04:39 AM   #33
Orchid
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God lsgs that sounds terrible, the most insidious illnesses always take the little details people forget about until they don't have them anymore. May I ask how you compensate for the low levels of saliva?
04-01-2014, 04:48 AM   #34
lsgs
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God lsgs that sounds terrible, the most insidious illnesses always take the little details people forget about until they don't have them anymore. May I ask how you compensate for the low levels of saliva?
Since steroid treatment and LDN my saliva flow is better but still reduced. The major complication of that is swallowing problems which is easily mitigated by always swallowing your food with fluid, which is gross at first but you get used to it. The annoying thing for me is that for whatever reason, my stomach struggles to tolerate water and I just reflux it back up, so it can be difficult having the stomach trouble and sjogren's. There are saliva substitutes but most are for people without teeth and acidic. The ones that aren't acidic are not very effective to be honest. I carry a spray with me when exercising as the mouth gets really uncomfortably dry if you breathe through it. I think the worst thing about dry mouth is when the little dangly bit at the back of your throat gets stuck to the top of your mouth and you have to try to get it unstuck

In my job I have to speak face to face a lot and sometimes my mouth gets dry and my words come out wrong which is a bit embarrassing.

Also if you ever get dry mouth, budget a lot for dental work!
04-01-2014, 06:55 AM   #35
LodgeLady
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Like this thread! My ailments are IBS/Crohn's ( maybe Dr. still wrestling with the Crohn's) asthma ( adult onset), allergies, bee venom allergies, acid reflux and now bile reflux since my gallbladder was removed.

Still trying to get this asthma under control. Just when I think it is, I get hospitalized for it! Was admitted back in January when I caught the flu. All these GI stresses don't help matters.
__________________

Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

04-01-2014, 07:08 AM   #36
ron50
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Hi Lodge lady flu really seems to knock us around . Until they came up with the asthma dx when I was in hospital with the last lu in November last year I and the docs thought it was pulmonary edeema causing the wheezing. Now I am on symbicort every morning and I use ventolin thru a spacer at night. Ron.
04-01-2014, 07:40 AM   #37
lisakuney
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Do you mind me asking what your ME/CFS symptoms are? I have some friend with this and have been considering talking to my doctor about it being a possibility for me as we have very similar symptoms....I hope you get some treatment and get on the road to recovery
The list I am taking to my new doctor is thus:

Severe, unrelenting fatigue
Post-exertional fatigue for days after I try to do anything
Loss of strength (used to leg-press 400 lbs. Now can't climb stairs)
Loss of stamina
Loss of flexibility
Pain in joints and muscles
Blurring vision, increased intraocular pressure
Elevated white count for 2 years
Brain fog
Sensitive to smells, noise, and light
Irregular heartbeat, tachycardia
Anxiety
Depression
Anemic (needing iron infusions)
Dizziness and balance issues
Severely fragmented sleep (study showed brain "waking" 30X/hour)
Poor temperature regulation (either cold or overheat easily)
Medication sensitivity
Constant nausea
TMJ
Frequent sinus headaches, migraines
and of course the Crohn's symptoms

I hope the new doc listens. I get tired of being minimized because I have a high pain threshold and am not histrionic.

What are your ME/CFS symptoms?
04-01-2014, 07:44 AM   #38
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Thanks for the support group. I have IBS, Sarcoidosis, chronic vertigo, Fibromyalgia and they are testing me for thyroid and addisons. I mean really....where does one stop and the others start. I have had a series of crazy symptoms that started with the Sarcoidosis back in 01 and I keep adding to the list. My doctors are stumped.
The Sarcoid is my worst so far but went into remission with the steroids back in 03. I was off all drugs till I moved home to care for my aging parents in 04 and you know what stress does. In 06 I ended up back on steroids while my parents were getting worst and to make a long story short the drs left me on a low dose of drugs to control my symptoms. Being so embedded in the care of my folks till they passed away I never noticed that my body was getting addicted to the steroids. After a gallbladder surgery, a bout of breast cancer and my daily struggle with chronic vertigo I just gave up. The fog is lifting but I now find myself with a new crop of symptoms that have no end or meaning.
So yes I have everything but the kitchen sink.
It is interesting to see what everyone has out there.
04-01-2014, 08:07 AM   #39
Lightblb
 
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Hi all, I have Crohn's, and I believe many of my other problems are related. I was diagnosed with "systemic inflammation" so I have painful joints, a crunchy spine, and I have asthma. I also have epilepsy, vision problems, and multiple benign tumors on the bottom of both feet. I have scoliosis, and minor things like hypothyroidism and high cholesterol. But all in all, I think I am doing pretty good. I still have all my body parts except a tooth.
Also, I have no insurance at all. I am on Pentasa, phenobarbital, azathioprine, pravastatin, levothyroxine, and 2 B supplements due to the pheno. My last MRI was in 1996.
I am on the SCD diet for more than a year and am doing pretty good. I find it interesting that people with Crohn's have other auto-immune problems. I am watching my niece as she has developed alopecia (hair loss) and her sister has frequent stomach pain.
God bless you all, maybe we can learn from each other.
Lightblb
04-01-2014, 08:20 AM   #40
shawnagio
 
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I believe NO ONE should judge how someone else feels or if they are really sick or not. That person has not walked in anyone elses shoes nor have we walked in hers. They could be that sick or they could just have no tolerance for any pain--no one knows so We should all just support--This is not a contest to see how sick this or that person is. It is to find support and maybe just to vent to those that DO understand
__________________
Shawna
Entocort
folic aid
mercaptopurine
asacol
nexium
align
remicade IV

DIAGNOSED
Crohns/ulcertative colitis/gasteritist and waiting on more....
04-01-2014, 09:41 AM   #41
BUNKIE10
 
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Lisakuney - I would be interested in what your Dr says. I have many of your symptoms also...just named the major ones. Medication sensitivity is a bad one. They can not find anything I can take. Also the sensitivity to smells etc. Do they have any idea what causes your vertigo?
I had a naturopath tell me that a lot of this was Multiple Chemical Sensitivity. There is no ttreatment for that either...just avoid everything.
04-01-2014, 12:52 PM   #42
nancy81
 
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Hi my Name is I suffer with Crohn's Disease,
I also suffer with severe Asthma, I also suffer with severe Depression.
And it is a daily battle and a daily struggle to take all my pills!!
And it is A struggle to manage all my doctors an Hospital appointments.
And it can get confusing trying to manage all my appointments and
making sure that I don't forget about any appointments! so that I don't miss any appointments!!
and I have severe Calcium deficiency, and I have anaemia Due to Iron
deficiency, So I have to have blood transfusions from time to time.
I also have vitamin B deficiency.
I hope that your all keeping well.
04-01-2014, 02:01 PM   #43
Essieluv
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Well, as if I didn't have enough...today I got diagnosed with fibromyalgia as well. Another illness to add to my ever-growing list.
__________________
Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
04-01-2014, 03:57 PM   #44
carrollco
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Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic. (((hugs)))

__________________
Louann
First diagnosed 12/4/10
Humira 4/7/11 and lovin' it


Previous Meds:

Methotrexate--had kidney/liver damage
Lialda--allergic to aspirin--but didn't know until my Crohn's got much worse.
Prednisone--only when I have to!
04-01-2014, 03:59 PM   #45
Jennifer
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I really don't agree with the 'my problems are bigger than yours' thing.
It's all subjective so I'm really hoping that we can all just drop it and let it alone. It was a personal rant and I respect them for being brave enough to say it. This is a safe place to share our feelings so I'd like to keep it that way.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-01-2014, 04:27 PM   #46
carrollco
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Anyone have benign positional vertigo? Or may I add, rocks in their ears?

04-01-2014, 04:41 PM   #47
ron50
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Hi Carrol,my dad used to spend days in bed when he could not lift his head off the pillow. He described it as being seasick on dry land. I live alone and when I had my first attack I thought I was dying. When the ambulance arrived I was on the floor in the toilet. They asked me if it was self inflicted. Just looking up and answering the question started me vomiting again. That was at 8pm at 4am the next morning they sent me home from hospital in a Zofran fog. I take a Phenergan anti-histamine morning and night and it seems to help though I do lose my balance and have had some bad falls. Ron.
04-01-2014, 05:04 PM   #48
carrollco
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Have you tried canalith repositioning? Omg, it really works! My doc knew about it. No more suffering for days on end.

04-01-2014, 05:46 PM   #49
lizbeth
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I feel like I'm moaning when I say what other issues I have but here goes . Type 1 diabetes, osteoarthritis in lumbar spine, hands and knees, also disc bulging in lumbar area. Had surgery to correct impingement of my left shoulder and waiting to have right shoulder checked for the same. Had unsuccessful surgery on right wrist to remove a ganglion, sadly the op caused long lasting damage and I have permanent pain when I use my hand. I have diabetic maculopathy in my right eye and have lost 2 channels of my central vision in that eye, my left eye has retinopathy and will need treated at some stage, treatment is not an option for my right eye. Recently diagnosed with carpal tunnel in both wrists. Multiple joint pains that make me look like an old woman when I move, RA he's been ruled out but symptoms suggest something is going on, sero-negative arthritis has been mentioned? I have a lipoma wrapped around my left Achilles tendon that may need to be removed and of course I have something going on with my bowels thought to be crohns. Will find out on Mon result of feacal calprotectin and then whether I'm going to be offered treatment.

I feel like piggy in the middle between 2 GIs, 1 says I have scarring so no treatment instead surgery, the other says no it's inflammation so no surgery, methotrexate instead, so I've been waiting nearly 6 months for them to decide and in the meantime I have to rely on a wonderful gp who manages pain relief and apologises that I'm not pain free.

I haven't worked since my wrist surgery 3 years ago, I had hoped to go back and then got tummy problems and would honestly say there is no way I could work atm, some days I can hardly get out of bed. I really hate being asked what do I do all day cos it's so difficult to explain that gettin up and living with so much pain is a full time job? I'm a carer for my dad who is very poorly and I spend half the week away from home helping him.

I know I'm not the only person who has lots of things wrong and I also truly believe I could be worse.
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Lizbeth
04-01-2014, 07:29 PM   #50
Ki3
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· Stoma
Wow I'm glad I found this! Here goes,

I have (obviously crohns) raynauds,
Asthma,
Eczema,
Psoriasis,
Flat feet,
Corrected squint,
I'm being tested for;
Fibromyalgia,
PTSD,
Anxiety,
And will probably develop scleroderma in future according to my doc. I have undiagnosed muscle problems as well as having hypermobile joints.
I have been told It's likely I will battle anorexia (again) and I probably have many other undiagnosed problems.

Such fun to deal with being a 13 year old girl trying to live a normal life.


__________________
Kitty
Diagnosed January 2013- Crohns Disease
Currently on: Azathioprine(imuran), Infliximab(remicade)
Had a temp Ileostomy (now reversed)
16 ~ Female ~ SouthEast England
Always here to talk!
04-02-2014, 04:28 AM   #51
Orchid
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Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic. (((hugs)))
What do you know, I love writing too! If I wasn't interested in biochem/medicine I'd probably have focused on writing.
04-02-2014, 04:36 AM   #52
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Reading some of these lists I feel I have got off lightly! Glad that I don't suffer from a lot of the mental issues mentioned above. I feel sorry for those suffering with anxiety on top of an IBD and everything else…

Anyway, here's my rap sheet:

Crohn's / Ulcerative colitis - mild, but still a bit undiagnosed, even after 6 years. Currently taking 6MP and prednisolone as well as omeprazole for the acid reflux.
Osteopenia - like others here and because of the steroids.
Haemochromatosis - regular venesections required to maintain safe iron levels.
TMJ disorder - causes jaw pain, head and ear aches as well as back, neck and shoulder pain. Take cocodamol for the pain.
ITP - low platelets. Was on prednisolone for this.
Atopy - slightly allergic to dust, pets, pollen, nuts, raw apple skin, etc. Causes eczema / asthma, but manageable with antihistamines.



I find it interesting that a number of people here also suffer with TMJ disorder. My dentists says it's due to stress…which is often mentioned as a trigger for IBD flare ups, so there must be a connection.

I have only had days off for colonoscopies and, I think, one day off when I was quite ill. But I have an understanding and lovely boss, so we have managed to work my work around my illnesses and hospital visits.

My doctors, nurses and consultants at the hospital have been great to be fair. The NHS gets a lot of stick in the UK, but they have been really good… it's the getting to see them that is the problem! My GPs have been terrible at trying to diagnose the above and then struggling to justify getting me referred.
04-02-2014, 08:19 AM   #53
Nansea
 
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Me next. Asthma since age 8 with chronic bronchitis and pneumonia Crohns diagnosed 1987 age 23 after 4 years of diagnostic craziness. Proctocolectomy 2007 with permanent ileostomy, spondylosis, Psoriatic Arthritis and Lupus. Benign tumors in girl parts but not surgical candidate due to scar tissue and adhesions, endometriosis. Fun fun fun. I am allergic to most meds and have exhausted pharmaceutical options for crohns, spondylosis and psoriatric arthritis. Prednisone kicks me into diabetes. My skin condition related to my lupus along with my adhesive allergy make it nearly impossible to keep an ostomy appliance on so I am frequently covered in ick that along with my snake like appearance makes me quite a beauty haha. But on the bright side I don't wear diapers any more (I wore them through my late 30s. For whatever reason I have always worked full time and I still do. No heavy lifting though, I am a hospital administrator.
Glad there is this group here, I have had a hard time finding a place to discuss or check with others with multiple issues that complicate each other. Nansea.
04-02-2014, 09:12 AM   #54
Essieluv
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I have an allergy to adhesives as well. I cannot use typical IV tegaderm and tape, which makes hospital stays and procedures a pain. It's weird, I just developed it in the last year. One ER nurse told me it is common in fair-skinned, red-haired people. (Although I wouldn't say my hair is red, more strawberry blonde).
04-02-2014, 11:05 AM   #55
mg12061
 
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Hi I just found, this group. I'm a little shocked at how many of you suffer from other ailments. My daughter is 17and has Crohns disease. She was diagnosed a few years ago and has been pretty much symptom free until recently.
My daughter has several other health issues.
She was born with Down syndrome, and was very healthy until she was almost 5. She suffered a couple of strokes an was diagnosed with a rare neurovascular disease called Moyamoya. She had several strokes one very severe and 2 surgeries to treat the disease(there is no cure). She also has been diagnosed with Hashimotos, celiac, intestinal dissmotility (had cecostomy surgery 12/12 placing a Mic-Key button to flush her intestines with golytely daily), Hydronephrosis caused by neurogenic bladder(had appendicovesicostomy a stoma in her belly to catherteize her), ovarian cysts, She has several orthopedic issues caused by the Down syndrome and strokes, AAI (an instability in her neck), slight scoliosis, she wears an AFO on her right leg and a KAFO on her left for stability and preservation of her joints. She gets Botox in her left ankle for tight heel cords. She's been having problems with her legs lately and not wearing her braces. Not yet sure what's going on with this. She takes asprin to prevent more strokes, Delzicol for crohns, Synthroid for hashimotos, and Oxybutinin, for bladder spasms, and Vitamin D. And YES the most difficult part is trying to figure out what is causing any symptoms she has on any certain day. Her communication is difficult especially about how she feels. It's been very interesting reading a your stories. Thank you for sharing...
Mary G.
04-02-2014, 11:10 AM   #56
carrollco
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Orchid: Good for you! Great choice for a career.


04-02-2014, 11:27 AM   #57
SarahBear
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Orchid: I too was an abused child. I suffer from panic as well. That's why I became a writer. It suits my personality.Though I loath booksignings. People scare me. Criticism even more. But, I have learned to live with it and fortunately, I bear no visible scars or severe mental issues. Well, if you discount panic. (((hugs)))
Similar situation for me, as well. However, I've been unable to write since the abuse ended, oddly enough.

I've always been uncomfortable in groups of people - I often feel that they're talking about me and judging me. That's getting better, but it still occasionally causes me problems. More bothersome nowadays is the feeling that I don't have anything going for me - I have no personality, no positive traits. I know this stems from the situations I was in when younger, and is being triggered by other things in my life currently.

Looking at me though, no one would know. A coworker of mine was abused and abandoned as a child, and has extreme difficulty interacting with others. If it's mentioned, someone always says something along the lines of, "She had it rough. How would you feel if your parents didn't care about you?" Weeeellll…
__________________


Sarah.
Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

04-02-2014, 04:20 PM   #58
Jajabinks
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How does everyone manage their Spondylitis? I am suffering so much.
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Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
04-02-2014, 05:36 PM   #59
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So you will know a little more about me.Osteoarthritis,Osteopirosis,Crohn's Disease,Primary Progressive Multiple Sclerosis,Emphesema.Operations for Crohn's--3.5ft small intestine removed,large portion of anus removed.Just last month,I had my first break because of osteopirosis.I am 53 and have to be put in a home.
04-02-2014, 05:41 PM   #60
Orchid
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Similar situation for me, as well. However, I've been unable to write since the abuse ended, oddly enough.

I've always been uncomfortable in groups of people - I often feel that they're talking about me and judging me. That's getting better, but it still occasionally causes me problems. More bothersome nowadays is the feeling that I don't have anything going for me - I have no personality, no positive traits. I know this stems from the situations I was in when younger, and is being triggered by other things in my life currently.
I understand the discomfort with groups perfectly. Except instead of talking about me behind my back and judging me, I feel like someone is going to beat the shit out of me or yell at me. As a result I can't stand really exuberant people either, they just make me flinch and live in waiting for the getting hit and/or yelled at.

And that feeling of worthlessness is a constant companion too. I hope you get find a way to feel better about yourself.
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