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Crohn's Disease Forum » Your Story » Is this the right support group?


04-19-2015, 11:38 AM   #1
Sita
 
Join Date: Apr 2015
Is this the right support group?

Hi there
Although I don't have Crohns, I have had three stomach surgeries, intestinal obstructions, absorption problems, severe pain, chronic constipation, or diarrhea
and disabling fatigue. I get iron infusions about once a year, and have on-going breathlessness and other low iron symptoms.
Can anyone identify, and if so tell me how long it takes after an iron infusion to get better from the breathlessness.
Or if I am in the wrong group, please let me know!
Thanks so much, Sita.
04-19-2015, 12:13 PM   #2
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello sita,

I don't see a reason why you can't join us, there are many here who can relate to the experiences you've had. Lots of us deal with obstructions and surgeries and absorption issues and pain is a big factor for many too.

If you don't mind me asking, do you have a diagnosis of a specific condition or have you had one thing leading to another?

There are a few of us here with low iron and associated problems, I've fought anemia since I was 12 or 13, long before my crohns diagnosis.

Personally I've not had an iron infusion before, but many people say that they will feel better in a few days to a week. Are you having blood tests soon to see if your iron levels have improved? Sometimes it takes a couple of infusions before the levels really stabilise.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-19-2015, 03:03 PM   #3
Sita
 
Join Date: Apr 2015
Hi Nicola
Thanks for responding. I do not have a specific diagnosis related to the bowel issues, just surgery related adhesions, I guess. I don't have a GI, or even a primary right now, just my oncologist, who is also a hematology doctor. When I first discovered the anemia I got a blood transfusion, then a couple of iron infusions, and the oncologist did tons of blood work then until my Feritin came up. Now I get blood work every three months and follow up for the cancer. I just had an upper endoscopy to see if the stomach ulcer I had acquired had healed and it has healed. I still have stomach cramps, bloating, gas, constipation, etc. and of course the fatigue. The cancer medication I was taking causes all of those symptoms too, so I am taking a break from it for a bit. I just feel so crummy all of the time, whine, whine, sorry! I know very little about Crohns, except I do know that it is a terrible disorder too!
To be honest, this whole thing, the bowel resectioning, anemia, cancer has so worn me out that I am reluctant to have further testing. In addition to the huge medical bills, even with insurance, I am so tired of being poked, scoped, prodded, I call it medical fatigue, being sick of doctors and medicine with all of their faults...I know you can relate, anyone with a chronic illness can. Anyhow, do you take iron pills, if so what type? I take hemme iron that I order from a lab in Colorado, but don't know if it makes any difference at all. I cannot tolerate other types of iron. It is pricey, so I wish I could handle cheaper iron..
Sita
04-19-2015, 03:57 PM   #4
FrozenGirl
Senior Member
 
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I have had a couple iron infusions. Depending on the type they may split dose it ( once a week) or do it all at once. I felt better about 2 weeks after my last infusion.
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04-19-2015, 05:25 PM   #5
Sita
 
Join Date: Apr 2015
Is the Ferramax an iron supplement?
Thanks, Sita
04-19-2015, 06:56 PM   #6
FrozenGirl
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Yes it is. It's an hematinic polysaccharide iron complex. It has been the only one I tried that doesn't bug my digestive system. It is however 10x the price of the cheap iron ( 5 dollars/100 vs 65 dollars/100 pills). It is also only 1 pill once a day which is nice. You can take it with it without food.
04-19-2015, 07:57 PM   #7
Sita
 
Join Date: Apr 2015
All the forms of Iron I have taken, except Hemme iron, cause me terrible constipation. Mine costs $49. Per month, so your solution would be cheaper, but do you have problems with iron causing nausea and constipation? I am not sure that my iron pills are having any impact on my anemia, since I still need an iron infusion one a year, has your iron helped your anemia? I hope these questions are not too personal, and I appreciate your answering me! Thanks, Sita
04-19-2015, 09:10 PM   #8
FrozenGirl
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No problem, happy to help.

No I haven't had issues with this form. My main prior issues with nausea ( like you) and increase in diarrhea. This iron has solved pretty much all of those. It has helped my anemia. It's not enough to completely control it if I am having a lot of bleeding but it keeps me from dropping too low, and when I am not having lots of bleeding it keeps me at a good level.
04-19-2015, 10:11 PM   #9
24601
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Join Date: Dec 2013
Location: London, UK
Hi! Welcome to the forum!

I just thought I'd chime in with another iron supplement suggestion. I take Floradix which is an all natural liquid iron formula. It's not cheap (about $24 for 25 days supply) but it is supposed to be easy on the digestive system and it has never caused me any of the problems that other iron supplements have.

I think you've found the right forum for people who can relate to your symptoms!
04-20-2015, 12:57 AM   #10
D Bergy
Senior Member
 
Join Date: Apr 2007
I would get tested for mycoplasma infection. All those symptoms sound like you could be carrying a large load of some strain of mycoplasma.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
04-20-2015, 09:18 PM   #11
Sita
 
Join Date: Apr 2015
Thanks so much for the posts. I really have to watch out for constipation
because of my adhesions. I have tried Floridex and other liquid irons and they were better
than the other iron, but still I couldn't tolerate them.
Dan, you lost me. I don't have Crohns, so I am not sure if I would have this infection. I have absorption problems due to having a bowel resectioning, doctors don't think I should be having the absorption issues, but other healthcare providers, (nurses, therapists) say that they have seen this lots with people having bowel removed.
Thank you all so much for responding and being welcoming. I know that folks dealing with similar problems have solutions that work that doctors are not aware of...
Sita
04-21-2015, 12:42 AM   #12
D Bergy
Senior Member
 
Join Date: Apr 2007
The infection is common, but whether it causes problems is a matter of how much, and if your body is able to deal with it effectively.

Best regards.

Dan
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